I am begging for help. I am a 30 year old female who has been having severe scalp pain for the past 9 months. It feels like someone is pulling out my hair or acid was poured on it. A few days ago, I went to get my hair cut to lessen the weight on my head and the barber caught her comb in a snarl and pulled a section of my hair very hard. It feels like I was cut with a razor right where she pulled. I can feel EXACTLY where she pulled out the few hairs. It is severe and I don't know what is wrong. This was 5 days ago and it hurts very bad.
I have seen several doctors for the scalp pain and they are still not sure what caused this or how to treat it. The pain is enough to make me physically ill and not want to eat. It brings me to tears every day. Could she have damaged the nerves or follicles? She said she didn't pull out any hair, but I think she did. I have never felt this much pain before. Please help me! I am terrified and in SO much pain.
hi, i'm not sure but i hope somone can help -all i can think of is a nerve issue, it may not be at the site if the pain -i suffer from very sensitive and painfull skin in my groin area and this is due to nerve damage at the spine...
have you ever done anything to your cervical spine? i have been told i have occipital neuropathy and this is one of or can be one of the symptoms. if you haven't had a recent c-spine mri, see if you can get your dr. to order one for you. best of luck and please let us know how you make out! i feel your pain!
Welcome to the medhelp neurology forum. Thanks for writing in. I can understand the agony that you are going through. Excessively sensitive scalp could be due to scalp inflammation caused due to diet, stress, internal hormonal imbalances or a bacterial/ fungal infection. The symptoms could be severe itching,redness,pimples, oily scalp, flaking, crusting causing bleeding. It could be something more serious like temporal arteritis. This is the inflammation and damage to the large blood vessels that supply the head, usually branching in the neck from carotid artery, usually the temporal artery. Along with scalp sensitivity and tenderness other symptoms are excessive sweating,jaw pains intermittently, muscle aches, throbbing headache on one side or back of head, visual disturbances. Hemoglobin may be low, serum alkaline phosphatase is increased, sedimentation rate and C reactive protein are raised. Corticosteroids and immunosuppresants are prescribed. Please consult your neurologist at the earliest for quisk intervention. I hope this helps you.
Thanks for your quick reply. I had an MRI done of my brain and spine and it came back normal. I have had many labs done and the only abnormal results were an increased cortisol level (stress) and my protein levels were low. I have struggled with eating disorders for about 16 years but have been OK for a year or two. I do ingest a lot of nutraweet daily. A LOT! Could this cause scalp pain this severe?
The pain is so bad that I have thought of suicide several times although it isn't something I could do. It hurts to actually move my hair and it feels like something is eating my scalp. I was diagnosed with Seb Derm of the scalp but the dermatologist said that seb derm doesn't create pain. Are there any other tests out there? I swear that there is something going on under my scalp for it to bring me to tears when I shower, comb, sleep, etc...
I am SO scared. I also want to mention that I had my hair Highlighted on the top half of my head about 1-2 months before the scalp pain. I actually woke up not being able to touch my head. My life was great before I WOKE up with this. I kind of ruled out a chemical burn from the highlights since my scalp looks normal and the pain didn't start right after the highlights... Any thoughts on this? I would love it if you could name some tests or treatment for this. They also thought that this could be psychological pain. Is this possible to have such severe scalp pain and it be in my head?
I will be going to a pain clinic next month or the Mayo Clinic. I wanted to ask you of your opinion on the eating disorder, seb derm and more specifically the hair highlights.
Hi there. Extreme scalp sensitivity and tenderness appears to be quite closely linked to temporal arteritis. Please let your neurologist think on these lines. A biopsy of the affected artery would be needed to visualize giant cells microscopically. It appears too severe to be attributed to seborrhheic dermatitis or psychological factors. Nutrasweet is aspartame and not recommended for regular use due to carcinogenic potential( cancer causing).Try other sweet replacements like fruits, cane sugar etc.
Please don’t think on the lines of self harm, life is too precious to be given up just like that. Fight the battle, you will definitely hit somewhere. Take the help of family and friends to support you through this. I know chronic, agonizing and undiagnosed symptoms can weigh down the strongest of people but don’t give up. A psychiatrist could help you with medications for depression. Yes, a visit to the pain physician would be very helpful for nerve blocks etc. Take care and keep me posted.
You don't know how much it means to me that you write back so quickly. I feel like no one believes the pain I am in. I am seeing a psychiatrist and therapist.
One thing I wanted to mention was that my scalp pain goes in cycles. For about 4 days it will hurt to the point of tears and then overnight it will turn to severe itching. I was also diagnosed with Chronic Telogen Effluvium and have lost about 30% of my hair over the past 8 months. The hair loss has lessened but I tend to lose more on the itchy days. I was prescribed a 2% Ketoconazole shampoo but I have only been using Head and Shoulders because I am scared to use the Ketoconazole. Is the 2% Ketoconazole safe? Will it damage my hair?
I also was still wondering about the hair dye that I mentioned in the previous post. Do you think this could cause pain like this? I just don't know what to do anymore. It feels like something is eating my scalp right now and then I know it will turn to pain again. Is it typical to have pain associated with seb derm?
I apologize for asking so many questions. I have seen about 11 doctors since the scalp pain, hair loss and dermatitis came on and the doctors don't know how to find the cause of the pain. They have done mainly blood work. Do you think a biopsy is necessary? Last time we talked about it, they didn't want to do it because of my severity of the scalp pain. They also didn't think they would find anything.
I still think the doctors are missing something or not doing the right tests. There must be a cause to the pain whether it was the hair dye, my hair getting pulled, diet, etc... Like I said, I went to bed great and woke up with the severe scalp pain. Is there any hope for me?
I want to take an oral medication for the seb derm, but no doctor wants to prescribe it to me. I read about Itroconazole working for seb derm. Any suggestions on how to treat this?
I appreciate your help and thank you again in advance for any advice you can offer me!
Make sure you do go to Mayo or another tertiary care center. Severe pain on the scalp would likely be nerve related, perhaps neuralgia, from shingles or herpes simplex, even if was quite awhile ago, this could persist. Also, neuritis, as others above this comment have stated. There are also inflammations of other arteries other than temporal which is very painful. Make sure why they are trying to figure this out, they try Lyrica, Neurontin, or Topamax for your pain to see if works (helps nerve pain). BOTOX is used for migraines and perhaps could benefit this if it persists. Also, nerves can be ablated if they can determine which one(s) are affected. Good luck!
Thank you all for your help and advice on this chronic issue. I had an MRI done of my brain and neck and everything was normal. They ruled out pinched nerves, MS and any other neurological disorders because of it being normal. I am still in a great deal of pain and my sebborrheic dermatitis on the scalp is spreading and getting worse. I use head and Shoulders daily. I was also prescribed 2% Ketoconazole shampoo for my scalp but am terrified of it making my hair fall out or become dry and brittle...
Has anyone ever tried Keto shampoo (Nizoral)?
I would love to hear anymore thoughts on the scalp pain and also the seb derm.
I know this is an older post, but I want to tell my experience in hope that it helps someone. I had a shooting pain in the back left portion of my head. It was on and off for several years. I also noticed that I would get bumps on my scalp that would bleed if I picked them off. I thought these were unrelated issues, but I tried a new shampoo. I went and got a bottle of Denorex shampoo (with Salicylic Acid as the active ingredient). I used that everyday for about 3 months and then scaled back to 3-4 times a week. That was over a year ago and I haven't had either the bumps on my scalp or the shooting pain to the back of my head. I am not a doctor and if the pain is constant and overwhelming, I would certainly get it checked out by a professional. But I also don't believe that every condition is solved by drugging people up with all kinds of prescriptions. Give the shampoo a try and then see if you need more extreme measures.
Thank you for still replying. I still have the burning scalp and they still don't know what the cause is. I was diagnosed with seborheic dermatitis about 3 months after the pain started. I have been using medicated shampoos and prescription strength shampoos for about 2 1/2 years now. I struggle to keep the seb derm at bay and have to use a variety of medicated shampoos daily to keep the itching and scaling down. I still have the burning pain some days and they don't think the two are related at all. I appreciate your reply and I just wanted to inform you that I have used Salycilic Acid shampoo but it did not lessen the pain. Thanks!
I had suffered from scalp pain (like someone was pulling my hair) to scalp tingling with hair loss in the area of disomfort. After years of tests and doctors and no conclusive diagnosis, I was advised to try a serious elimination diet to eliminate the possibility of food sensitivities. The only thing I tested positive for was lactose and fructose intolerance, both in the sugar family. I tested negative for Celiac. I followed the FODMAP elimination diet and within two weeks, noticed my scalp pain was gone. Sugar in many forms (certain fruits, vegetables, flours, etc) flairs the symptoms for me as a result of my fructose malabsorption. I have a limited diet, but I now able to know exactly what my triggers are and I havent fell this great in years. . Consider it - it may or may not be your issue. Google fructose malabsorption and see if anything resonates with you
My daughter is 17, and she has had scalp pain for 6 years now. It has escalated in the past year. Before she would wash her hair and it would feel better for a day, but now she washes her hair and it is so painful, she can't try it and it has to air dry. It is day in and day out - mostly the entire head, and sometimes certain spots. She is beside herself with pain. She had an MRI and nothing showed up, and she blood work done. She has some immune deficiencies, and she has lyme. She was bitten in 2002, but she never told me. She was only 7, and she found a tick by her groin and pulled it out from what she remembers. She started getting swollen ankles in 2007, and the pediatrician tested for lyme, but she said she didn't have it (I came to find out recently when I requested all her medical files, that she did indeed have it in 2007!). She sent us to orthopedic dr's who put her in a boot; and that did not stop the swelling. On our own, we found a doctor who tested her thyroid antibodies, and he diagnosed hashimoto's disease. He put her on omega 3's, selenium, probiotics, and Vit D3 because her level was 17. He retested her for lyme, and it was positive again, and he told her she was in the fight of her life. He prescribed a lot of meds, and she began herxing (which means the toxins are coming out from lyme), but she could not stay on the meds for more than 3 weeks, because her bp dropped to 70/49 and she couldn't get out of bed.
Since then, she is still fatigued beyond belief. She goes to school, and she sleeps until 2-4pm on Saturdays and Sundays. We are now seeing a lyme literate dr who prescribed new antibiotics, and she still has a low vit D3 level which is commensorate with lyme. The hashimoto's may not be such, since lyme is the great imitator and can present as several different diseases. However, the scalp pain persists and has worsened.
We saw a neurologist who said it was stress, but his PA said it sounds more like a neuropathy of the scalp. She is so depressed between the lyme and the scalp pain and she is just finishing a tough jr year. I don't see how she can begin the college app process, and I want her to take a year off to get well. She doesn't want to, but I'm afraid that if she goes off to college, she will only get worse. I take good care of her, and without my reminders (since lyme makes you forgetful and puts you in a constant brain fog), she will flounder. I don't want her to be on all these meds. Right now, her quality of life is awful, since she can't exercise, and she is in pain and so tired. Her dr had to put her on adderall just so she could stay awake in the mornings for school.
She gets terrible mood swings with lyme, and at times, lyme can make you feel like you are going insane (I had it, but the dr's never tested me for it; they kept saying it was depression and menopause!).
I am desperate to find a cure for this scalp pain. No one should have to have these kind of symptoms for so long. I've checked with a few lyme boards and organizations, but I haven't gotten many responses about scalp pain and lyme.
Any help would be appreciated. She also has not had any damage to her cervical spine, and she doesn't have bumps, itching or inflammation - but does shed a lot of hair in the shower. She used to have long thick hair; and although it is still long, it is not as thick as it once was.
Wow. I was the girl who started this topic and my heart goes out to you and your daughter. I was so sad while reading it because I know the scalp pain all too well. Mine started over 3 years ago. I literally went to bed fine and woke up feeling like someone poured acid over my head. Several weeks later I started losing my hair and developed Seborrheic Dermatitis on my scalp. I lost about half my hair. My hair used to be down to my waist, healthy and SO thick I couldn't put it in a pony tail. I really miss it. Now I have to keep my hair chin length because of the pain. It hurts to touch any hair on my head. I can't wear a hat, go in the wind, go in heat or cold, etc... This pain has caused me to develop an extreme fear of being touched. i haven't let anyone touch me in over three years now. not even a hug from my parents. It has brought me to near suicide many times and I checked myself into the psych ward this past summer for suicide.
I went to over 11 doctors and specialists. I had blood work done, MRI's, CT scans, tests upon tests upon tests. Three years later and still no answers. They gave me Bilateral Occipital Nerve Blocks in my scalp because they figured it was a type of neuropathy. It wasn't because the shots didn't help. The pain can travel around my scalp and take on the sensations of bruising, itching, burning, pulling, stabbing, etc... I never know day to day what it's going to be like.
I have become an isolated shut in. The computer is my only link to the outside world. I also have battled anorexia and bulimia for over 18 years. Iam very sick right now and only weigh in the 70's. I am 32 now and developed eating issues at the age of 12. I have been hospitalized in eating disorder treatment centers over 7 times. It's a life and death fight everyday for me.
I don't know much about Lymes disease but it sounds awful. My uncle had it and was tested and came back negative. He got sicker and they tested again and it was positive. He didn't have any lasting damage except some joint pain because they caught it early. It sounds devastating... I am so sorry.
Tell her to hang in there. I shampoo with dandruff and medicated shampoos to control the seb derm and any inflammation there may be. They tried me on oral nerve blocks like Gabapentin and Lyrica but they didn't do anything. They are clueless and it's depressing...
At first they told me it was all psychological. They had never heard of scalp pain before but I brought in cases of them and they started to believe me and did some research but also could not find a cause or cure.
I am sorry I don't have better news for you and your daughter. Please ask me any questions if you would like to talk! I am here for you and this diagnosis is so rare, we have to help eachother. Unfortunately I have talked to a few other girls online and two of them took their lives because of the scalp pain. I don't wish this on anyone... God bless and take care!!!
I agree. Have the same issue and it maybe related to arteritis. Keep a journal with all pain sympthoms. This helped when I take it to all the doctors I am seeing for temporal arteritis. They put me on low dose of corticosterods. My sympthoms were many and isolated on my right side.
Thank you for the long and detailed response. I am so frightened and sorry that two people took their lives over the scalp pain. I know from watching my daughter in the prime of her life how devastating it is, and I would never want her to contemplate suicide. I can't say I know what you are going through, because only you know that, but please hang in there and pray when it gets so bad that you might ever (which I pray you won't) consider taking your life.
I am a firm believer in alternate treatments simply because many times they work and because non-believing doctors attribute everything to psychological disorders. BS! I can't tell you how many doctors disagreed about my daughter's lyme diagnosis, and had she been treated when it was first diagnosed NONE of this would be going on.
I took her to the neurologist last fall because the positive lyme tests and the scalp pain were too unbearable. My daughter had switched schools and I am separated from my husband. My daughter could not care less about the latter since he and I have had problems for 27 years that we were married. However, switching schools was a terrible shock for my daughter, and yet she persevered as best she could. She went from a class size of 93 to one of 500. She was the only one nearly doing all the assignments. She developed a terrible environmental allergen at the school, and despite the allergist's requests to do an assessment at the school to find mold, etc. the school refused to do it. After 5 months on antibiotics and steroids, we had to take her out per the doctor's orders, because her poor body was so depleted from the meds.
I also had a neuropsyche test done. Talk about prejudice! We didn't know that the woman's children went to the same school as my daughter, and here I was blurting out how incompetent the administration and some of the teachers were, so that got us off to a bad start. The neurologist (they work in the same office) had her tested not for ADD (since she has a lack of focus and can't concentrate - typical lyme symptoms), but for medical reasons. Her tests came back that she failed worse than an alzheimer patient and had emotional issues!
My daughter was always active in music and theater, and when she changed schools, they did not have those activities there. In addition, try to make friends in junior year of high school. Impossible. Add to that kids eating in class (yes, even during testing!), and it was the perfect storm to say my daughter was depressed. With lyme, you become light and sound sensitive. As it was, she couldn't concentrate from lyme, plus the meds which made her drowsy, and the chomping on food really put her over the edge in the sense that she could not focus on the reading but was focusing on the sound.
Once the neuropsyche heard my husband and I were separated, it became "this is all in her mind, and she's depressed, and if she doesn't get on antidepressants, she will never be a success in life." I was at the end of my rope. I explained that anyone would be out of sorts with a change of schools (in fact the school counselor said many kids would just give up and refuse to go to school, but she did 3 months worth of AP homework over 4 days because she wanted to succeed). The school made it all impossible. Outside of school her sinusitis cleared up; as soon as she returned from long breaks, she would relapse. I'm happy to say that once we left the school, there is no more congestion or asthma. And her cat scan is clear. If she would walk back in the school, it would start right up.
I explained to the neurologist that the scalp pain has been here for years, and that changing schools would not be the cause, since she had it at her old school. My marital situation? We've separated for 5-6 yrs at a time, and the only reason my husband had been back in the home was for financial reasons, but he is out again. My daughter never had a relationship with him.
They won't entertain her pain, and they truly believe it is psychological in nature. We are going to have a brain spect done in June, which the lyme dr ordered.
When I touch the acupuncture trigger point between the thumb and index finger, the pain is horrific, so I know that there is significant inflammation. When I touch the base of her school and muscles and tendons of the neck, the pain is bad. She may be a ball of stress, but I believe it is because we just can't find a cure for the scalp pain which is why it is getting worse (she's tensing up). However, I have bad muscle pain, but my scalp does not hurt like that. I am going to try some massage for her and some acupressure to see if that helps her any as she spends a lot of time doing reports and homework for school on the computer which doesn't help the muscle pain.
Yesterday, she was crying (which is rare), and she got a headache after that. She does not have headaches with her scalp pain thank goodness. But we witnessed a horrific car accident on the thruway and you could see the bodies through the windows. There was no way anyone got out of that alive as both cars were crushed and flipped over.
I hope you get well, and like it or not, these doctors will find the smallest thing that might be a sign of depression and anxiety to hang their hats on and blame vs. believing it is a real condition. Even with lyme, the CDC still believes a 2-4 week course of antibiotics will clear it up. Not if it is discovered in the latent stage. So the "lemmings" (all the dr's that follow what the cdc says) will never treat for longer than that (the lyme literate doctors will), and that is why you have more and more people being diagnosed with arthrities, ALS, MS, parkinson's, alzheimer's and other diseases. A cop in our town was breaking down in tears and having severe mood swings and called her therapist and told him what was going on. She was advised to go to the ER. After a battery of tests, they found it was lyme disease. It is the syphilis strain and can be transmitted sexually and in utero, and there are more cases than AIDs. This year, they expect more than 25,000 new cases because we had a mild winter and the tick nymphs are plentiful especially in the northeast and CA. There are over 600 strains worldwide, and people from every continent have come to the US to find treatment.
I just hope and pray we find a cure for the scalp pain before it drives everyone crazy. I haven't found anyone else with lyme that has scalp pain like my daughter's, so that is why I'm searching for answers on other boards.
Best of luck to you Tyke1980, and thank you so much for all your help and support!
Thank you for the reply! It sounds like your daughter has a lot of changes that have gone in her life over the years. I didn't have any changes at all in my life when my scalp pain started. I was actually very healthy with no major health issues and I WOKE up with this pain. It terrified me and I took myself to the ER and walk in many times and asked them if my scalp was burning! Of course, you know what their response was??? I think you should make an appt. with your psychiatrist as soon as you can.
I was so angry. I went to SO many doctors and the first 11 told me that it was psychological and stress would make it worse. I KNEW it wasn't psychological because I was happy and had a boyfriend that was great when it came on. I got to the point where I had given up on answers until I found a doctor that believed me. He said that this type of scalp pain is so rare and very few people have it. The lack of "victims" doesn't make it a high priority to fund research for treatment or a cure. He called it Burning Scalp Syndrome or Trichodynia. I also started seeing another dermatologist and she agreed with his diagnosis and she took the time to do EVERY test that she could think of. Vitamin/Mineral defficiencies, Brain scans, MRI's, CT's. Hepatitis, Nerve tests, etc... They found nothing. Yesterday I was crying because the wind blew a piece of hair out of place and the pain felt like someone was ripping my scalp off.
It's a daily battle and I wish I had answers for you. I think the diagnosis of her lymes disease could be causing a lot of her problems but I DON'T think it has to do with her scalp pain. I only say this because I was in good health when mine came on and I have talked to several others online that are in excellent health and don't have a clue how they developed such horrible pain. I was talking to a mother of 2 kids with a husband who has it also and she told her husband she wanted to throw herself in front of a car so she would die. It has ruined her life as well. Fears of being touched, etc...
I used to be very active. Horse back riding, Off roading, soccer, softball, swimming, camping, etc... Now I stay inside all day because the temperature changes cause burning and the wind makes me want to scream out in pain. I can't wear a hat either. I chopped my thinning hair to chin length so it would be easier to comb out and I seriously am thinking of shaving my head just so I don't have to worry about my hair in the wind. The doctors said the pain would still be there if I shaved my head... Losing battle...
I hope things get better for her. I know how hard it is for us that go through the pain, but last night I saw my parents for the millionth time trying to hide their tears because I was in pain. They invited me out to the lake and I couldn't go because of the wind. They are very understanding but it breaks their hearts to see their "little" girl becoming a recluse and agoraphobic.
Please keep me posted on how you and her are doing! We have to stick together and give any advice to each other that may help! God bless...
Please help me.. I have been having severe pain in my left side of the scalp and have been diagnosed with sebhorric dermatitis and was on medication but I still suffer from hair fall. The scalp aches usually reduce when I sit in the open space or get some breeze. I thought of seeing a doctor but please give me your valuable advice too doctor.
I was the one that started this topic because of my pain. I too have seborrheic dermatitis but all the doctors said it wouldn't cause the amount of scalp pain I have. I use medicated shampoos and prescription shampoos to try to help control the seb derm but nothing seems to work long term. I have found that Head and Shoulders makes it worse. That's the only thing I know. I have had it for over 3 years and it is so painful and gross. I hope that one of the doctors can help you more! i wish you luck and please feel free to contact me if you need to chat!
It's really disheartening to hear that it's been a couple years and you still have no answers. I'm going through this myself and I'm also 30. My doctors don't have a clue as to what is going on as my only symptoms are the pain and hair shed. My blood work only showed B12 and Iron on the low side of normal and I've been taking B vitamins since. I just saw 2 dermatologists who were absolutely useless because there's nothing visible on my scalp. Next step is to see a neurologist I guess. Meanwhile, the the horrible burning continues, my hair sheds like crazy, and I just want to die some days. Living day to day with this pain, with no end in sight... no answers..... how long can a person deal with this??? The doctors have me popping pills left and right which are probably doing nothing to help my cause. The only thing that has offered a little relief is neurontin, but i still have mild burning.
It makes me even more depressed to read that someone else has gone through this... jumped through all the hoops... and is still coming up empty handed :(
Hey sweetheart! Don't give up hope. I have come close to suicide many times because of the pain and not having any answers as to why it happened and why there is no treatment or cure. One thing that keeps me going is how quickly medicine changes and it could be tomorrow that they find a cause and cure. I also have seborrheic dermatitis on my scalp which makes the pain even worse. I haven't found any hope for that either after seeing so many dermatologists. I take daily showers for my seb derm and when I got out of the shower a few nights ago, it looked like my scalp had 3rd degree burns. It was blood red and the skin was just hanging there. I've learned to try not to pick but it hurt bad.
I wish I could explain the burning, itching, pulling, stabbing, etc....pain that we get and I wish there was some answer. All I understand is that it's a very rare disorder so no one funds research for it. I did try putting olive oil on my scalp in the worst areas last night and it actually feels a tad better today. I really don't know though. I was just glad to find a doctor or two that believed it WAS NOT psychological. I do have a number of mental illnesses, but this is not one. The pain has made me cut off my beautiful long, thick hair to chin length because I easily lost over half my hair.
My B vitamins are actually very high and they don't know why. They thought they might be on the low end, so they tested all my vitamins and for some reason, my B level won't go down. I do have to take vitamin D3 supplements because my levels are dangerously low....
It's strange how completely healthy people get this and how few there are of us. My one derm had heard of scalp pain before but he said he has never heard of it being so severe to where it controls your life. And it does.....
Hang in there and please contact me if you have any questions at all! I was also on Gabapentin, Neurontin, Lyrica, etc....thinking it was a nerve issue and even had injections of nerve blocks in my scalp but nothing helped. Keep your chin up and don't lose hope!!! Prayers and love to you!
Thank you Tyke. I am seeing a neuro in August. On the neurontin I have good days and bad days still, but I'm on a low dose and may need to up it a bit. I too cut off my long hair a few weeks ago because I lost so much of it. My recent bloodowork revealed that my B12 is back up to where it should be, and nothing else points to anything :/ I'm tired constantly, depressed... This is no way to live....
That's good it helps a little. Cutting off my hair was the only thing I could think of doing. I asked if shaving my head would help but they said that the pain is in the scalp and not the hair, so shaving my head might take the pressure off of the pain of washing it, but not cure the pain. I've been very depressed as well because it's summer and I can't go in the sun or wind without even more burning pains. All we can do is keep each other updated and pray for each other! Hang in there and let me know how things go!
hi i am also suffering from the same problem.... i have severe pain in my head as if someone were pulling my hair badly. i cant even tie my hair.... i have to keep them loosely tied but still it aches.... i have consulted dermatologists but they are unable to understand what actually the issue is. and their treatments are just useless. please suggest me something. it is just aweful.
hi i am also suffering from the same problem.... i have severe pain in my head as if someone were pulling my hair badly. i cant even tie my hair.... i have to keep them loosely tied but still it aches.... i have consulted dermatologists but they are unable to understand what actually the issue is. and their treatments are just useless. please suggest me something. it is just aweful.
I am so sorry that you are having this pain as well. I have had it over 3 years now and lost quite a bit of hair. I'm sure you read my previous posts if you are writing me. I have not found any doctor or any medication that helps. I shampoo with medicated anti-dandruff shampoos in case there is inflammation in the scalp. Yesterday I was OK, but I woke up today and my scalp feels like it has 3rd degree burns on it. It is very tender and it burning all the time. It hurts bad. I wish that I could tell you that there is some miracle cure but I gave up on trying to find the cause of the pain or treatment. I have been to many doctors of all kinds and have had EVERY test and CT scans of my scalp, blood work, etc... EVERY test the doctors could think of to find the cause. I had injections in my scalp that contained nerve blocks and even that didn't help. I don't know what or where the pain is coming from and it has really put my mind in a deep depression. I can't go outside in the sun, wind, cold, etc... Everything is painful and it hurts to touch it....very sore. If you have any questions for me, please let me know! You may want to google "burning Scalp syndrome". Also, google "trichodynia". These were two of the terms that the doctors used in diagnosing me. I wish you luck and please let me know how you are!
I too had this for about a year. I also have Lyme disease (and Bartonella at the time).
I woke up feeling like the top of my skull had been bashed in by a hammer. I told my husband that my hair hurt.
On other days, it felt like my skull was being squeezed. I could not touch my hair in any way, shape, or form. The pain at times would travel around my skull, or feel like overstretched rubber bands were twanging on my head. Some days the pain would travel through my ear, down to my jaw, or over the top of my skull and go behind my eye.
I was tempted to cut off all of my hair, as even the weight of it caused pain. And forget using any type of clip, bobby pin, or elastic.
I finally was able to find the cause, and the solution.
It was all referred pain from muscle spazms that had developed all around the back of my skull. And how did I get the muscle spazms?
Lyme disease causes severe magnesium deficiency, and testing is typically inaccurate because they usually measure your serum blood level, not what's in your blood cells (which is what counts). LabCorp does an RBC (Red Blood Cell) mag level, which gives you a better idea of where you stand.
So you're probably thinking - is this what I have??? To figure it out, take your knuckle and start poking around at the back of your skull and shoulder area. Find any spots that feel like a lump, and surprisingly hurt like heck if you apply a lot of pressure? Does the pain at the top of your skull lessen when you apply a lot of pressure to this spot? If it does, then you've got yourself a muscle spazm(s).
So, I first had to fix the problem, and 2nd fix the cause of the problem.
My Lyme doctor used Trigger Point Therapy - which is injections of Lidocaine directly into each muscle spazm. The lidocaine blissfully numbs the area, allows you relax a little, while the need point interrupts the muscle in spazm, thereby returning blood flow to the affected area. I would have as many as 6 or 7 of these done. The relief at first may be temporary (as mine was), and I went back for weekly injections until they were all miraculously gone.
To address the cause: I had to fix my magnesium deficiency. At this point, I had been taking low dose magnesium about 8 times a day. The problem is, magnesium is poorly absorbed orally, so if you are low, it takes an extremely long time (if ever) to get your body back to proper levels - most of what you take ends up in the toilet.
I had several IV's of Magnesium Chloride - once every 2 weeks, supplemented by weekly intramuscular shots of magnesium sulfate. The IV sounds scarier than it is - tiny needle in the back of your hand, 30 minutes, and you're done. I eventually learned how to give myself the IM shots. And as long as I stuck to weekly shots, the spazms did not return. On the occasion when I skipped my shots for more than 3 weeks and a spazm popped up, I'd manipulate it with my knuckle by applying extremely hard pressure for as long as I could stand it, then follow up with a heating pad.
Sorry for the length of this post, but this is a horrible problem for so many, and I thought it important to share how I got rid of it.
Thanks for the information. I believe that there was another lady on here who's daughter has severe scalp pain and also has Lymes Disease. Definitely good to know if these two go hand in hand. Unfortunately for me, that isn't the case. I did cut off my hair to chin length when it was almost to my rear. It was sad, but I couldn't take the pain anymore. Everything hurts my scalp from the sun, wind, cold, goosebumps on the scalp, etc...
I'm happy that you found your cause! There are many of us who haven't had any hope after many doctors and tests. Thanks for the information as I"m sure it may help others who come across this site!
I'm the one with the 17 yr old daughter with Lyme. It has crippled her life with chronic fatigue and she cannot get up before noon. She feels like she hasn't slept in months and can go right back to sleep, but the horrific scalp pain no one can fix.
I mentioned previously they recommended shots to the scalp; however, we just found out in june through a brain spect (which is done on lyme patients) that she has severe hypoperfusion of the brain in her temporal, parietal, and frontal lobes as well as basal ganglia. She also has candida from all the antibiotics, and I don't want her to go on diflucan or nystatin because I understand the yeast comes back with a vengence. She also has medication fatigue.
I am going to try a product called threelac which kills fungus from candida and I will keep supplementing with probiotics. If this doesn't work, then I'll do the diflucan but it will require liver tests because it is hard on the liver.
Additionally, I spoke with Columbia Presbyterian hospital in NYC (I've been waiting for a call back for 2 yrs that's how prevalent lyme is around these parts), and I'm hoping they will put her in the program (you have to be over 18). Both her lyme dr and the hospital said lyme can cause scalp pain, and I believe the hypoperfusion causing lyme encephalopathy has a lot to do with it since the capillaries to the brain are affected. Not enough blood flow to the brain is horrible. She has so many cognitive issues with memory/focus/concentration. She is supposed to go into sr yr and she barely made it through jr year. To stay awake at school the lyme dr prescribed adderall only a small amount because many lyme patients have add and depression secondary to lyme.
I'm most disappointed that she is 17 and homebound and exhausted but more infuriated now, because her last lyme test in june showed 2 new bands of lyme (no 18 is definitive of lyme in itself and she has never had that band all these years). I am disgusted because we have tested in 3 labs, and this is the only one showing these two horrible bands. I'm ready to do a co-infection test again, because in Feb, she had a negative western blot and now she is positive again. She never goes out! How she could have contracted more bands I don't know. I don't even let my dog out.
We are prisoners in our home in CT, because the deer are all over our property. The tick cannot bite you unless it is brought in on a host (i.e. yourself or an animal that passes it on to your body).
The only solution is an IV with ceftraxione for at least 3 months. Going into sr yr replete with the stress of SATs, college apps and visits is enough and having an IV is going to be too much. That means a liver test weekly and a gallbladder u/s once a month because this med tends to cause gall stones.
I look and think why must children suffer so much? It's not fair. I never would have dreamed this to be my daughter's life, and I do blame her pediatrician for not treating her in 2007. Had she done that, the disease might not have progressed to this point. She started with swollen ankles, and the ped. sent us to an orthopedist who put her in a boot. What I didn't know until recently was that a lyme test was done and it was positive. it wasn't until 2 yrs later as the symptoms were unbearable and she could not walk bec of the knee and hip pain that I insisted on a lyme test (thinking it was the first) and it was positive. She was almost going to refuse to treat her bec of the ridiculous CDC guidelines of 5 bands being reactive, but we all know now that even if 1 band is positive with the exception of band 41, then you have lyme and don't let anyone tell you differently!
However, she only treated her for 1 month (which is the CDC guidelines) but it just wasn't enough to wipe it out of her system, and the dr wouldn't even recheck to make sure it was gone. I had to go to another dr for the test and it was still there and has been since.
Lyme is one of the worst diseases out there more prevalent than AIDS, but people don't know it. It causes dementia/alzheimer's symptoms, and now they have emergency clinics for lyme in Westchester county NY bec so many elderly people are being diagnosed with neurological disorders like MS, alzheimer's and dementia when it is really lyme.
You have to advocate for yourself, and without any disrespect to the neurologists who post canned responses, many neurologist will NOT consider lyme and also believe these symptoms are caused by anything but - lyme CAUSES depression etc. and that is why it is called the great imitator.
Also, girls out there who posted, make sure you are having your vit D3 levels tested. It should be above 50 (some say 30 but not true) bec a deficiency can cause cancer and heart disease, and my daughter's levels because of lyme and her weak immune system are 17 - she's been on 5000 u a day and it is slowly getting up to 32. Get 15-20 mins of sun midday (bec then only the UVB rays are out; not the UVA rays which can cause cancer) and that will give you 20,000 u for free. With my daughter or anyone else who has a compromised immune system, your body does not absorb the vit very well.
I am also going to add much more magnesium because she does have a lot of pain in the back of her skull. We are going to try some scalp massage this week.
I just read a great article regarding a female reporter in Wash DC who said she had stabbing pains in her scalp, and everything she tried didn't work. She finally went to a chiropractor/nutritionist and find out she was deficient in magnesium. She began taking magnesium and using liquid magnesium for her scalp and it worked immediately. I'm going to try the magensium oil and liquid (since it is better absorded) and see how it works for my daughter. I also have her on alpha lipoic acid (supplements) because it is used for neuropathy. I won't use any kind of drugs, and I'm going to try massage and trigger point therapy. She was on Calm (a powdered magnesium supplement you put in water) 325mg, but it acted like a laxative on her. So I switched to Floradix liquid and we'll see how it goes. There's a book out called The Magnesium Miracle by Dr. Carolyn Dean, and I'm going to read that as well.
I'll keep you posted on the results.
Good luck to everyone in this painful and seemingly uncurable illness. It beats lidocaine and cortisone shots in the scalp which only last 3 weeks!
Thanks for the information! Any information is good information in this case. I had my vitamin/mineral levels tested and my Mg was good. I would still love to know the results though! I appreciate you sharing this bit with all of us... Good luck and I pray it is the "cure" for your daughter!
I wanted to share something with all of you.I hope I can shed a different light on this issue. Please be open minded and don't discard what I am about to write, strange as it may sound. I read all the posts above and I feel so sorry for all those who are suffering. I experienced a situation very similar to Tyke1980 for years. I had severe burning and pain in my scalp and was undiagnosed by doctors. My health was normal except for the pain and extreme hair loss of my scalp. I had taken all kinds of vitamins and supplements for years but found no relief. I started the fructose free diet, the gluten free diet, etc. but again got no relief. I had given up hope and was very depressed.
Then one day, just sitting in my room and thinking about my situation, something dawned on me. The more I thought about it, the more it made sense. I kept thinking I was under someone's black magic spell. It sure felt like someone had a voodoo doll of me and kept poking the head with needles. I had no other choice left but to dig into this and research.
Here in the US, most of us do not believe or know anything about black magic. In Asia, East Asia, Africa, and Latin and South America, it is accepted by society and almost everyone believes in it. In fact when traditional medicine does not work, people then typically do go do "healers" to remove black magic.
As I did my research, my suspicions were confirmed. I then had to choose the path of my healing. And it is only with the breaking of the black magic spell that I found any relief. There is no limit to what black magic can do. It can cause a person all sorts of illnesses and bring about personality and mood changes.
Tyke 1980, I think your situation is from black magic. Please look into it. if you need any guidance from me let me know. May God alleviate everyone's pain and suffering.
I also have severe scalp pain,in addition to fibromyalgia, spinal stenosis, and an entire host of other problems associated with the fibromyalgia. The scalp pain is very bothersome and I have had some hair loss, but it grows back. I was told and have read the scalp pain and hair loss is part of the fibromyalgia, is this true?
Since Thursday i have been havind scalp pain....i did this once before a year or so ago but it only lasted a day or two.....well i woke to it hurting to touch my head had a few knots and a couple spots my hubby thought were bites.....i also had my throat a bit swollen.... everyrhing on my right side.
I dont have ins right now dueto my hubby be layed off.....so i saw a friends dr who told me to take antibiotics maybe it was spider bites......been on them for 4 days and all it done is expand from the nap of my neck to the top of my head........ it hurts to touch....burns.....feels like a bruise in some spots.......as of today i now get like sharp little pains and throbs........when i take ib profin for my throat it does help a little with my head......
When that wears of i know because i can feel the burn more....i cant even lay on my pillow or do anything to my hair......which is long to middle of back and kinda thick.
I just want to lay in bed all day!
My diet ***** i know because i feed my kids before myself and try to keep the good stuff for them. I cant wait for this to stop and hope it does after reading this.
I hope with my hubby in training for a job i will be able to get a real dr to help me out.......even thoughi have learned in personal experiance they do not listen.......
I was told with my abdominal pain i have for over two years that it was all in my head and need antidepressants when low and behold i got a dr to listen and do tests and i have a pendiculated fibroid growing off my uterus and pushing against my bladder.....another thing i need taken care of but cant.
I know God only gives you what you can handle but sometimes i wish he didnt think i could handle such a big load.
Hi, I have this scalp pain too. I get it during my monthly period mostly and other times too. My scalp becomes so tender, that if i touch my hair, it hurts. I realized that heat in the body causes it. heat is generated by different foods we eat and harmones.
So the immediate solution is to take foods like drink sabudana ,eat yogurt with sugar , buttermilk and cutdown on meat. sleep should give some relief too. immediate result will be found by eating yogurt(mix 4 tablespoons of Dannon yogurt and mix it with 3 tablespoons of sugar) and eat it.
Also apply coconut oil(Indian store). coconut oil absorbs heat from head and cools it.
i have a hair fall for 5 years now. i tried everything. i drink a lot of food supplements which could help with the hair fall but i think it's getting worst. i dont even want to look in the mirror anymore. i'm always depressed. i want to die but i dont want to leave my daughter. i dont like to do activities anymore . i just want to sleep.. i feel that my scalp is inflamed and i feel tiny bumps. it seems that i have endless hair fall. i dont want to end up bald. pls help
I am eager to know how your scalp is now and what if anything has helped resolve it. I too am suffering from severe scalp pain that cycles. Sometimes in the back of my head but usually on the top. I have no dry scalp or itchiness. I haven't seen a doctor for it due to no insurance. I only take IBUprofren for it with little relief. The headaches can be so severe. My head always feels like its been in a pony tail way too tight, but I don't wear ponytails with this kind if pain. I've had scalp pain prior to having a child but nothing like it is now 4 months post pardom. I've lost hair but not enormous amounts. I'm almost non-functional on bad days. Please please share your results. I need to do something quickly!
I have been unable to log on for a while due to problems with my password so I thought I would give an update and try to answer some posts.
I haven't found anything to help with the scalp pain. It has been particularly bad this past week or two with severe burning. I can't tell if the hair loss has stayed the same since I lose hair all the time especially when showering. My scalp looks clear except for some itching due to the seb derm.
I wish I had good news for all of you. I am glad that I started this forum because so many more people struggle with this than I thought. Unfortunately, I have yet to find someone who has found some treatment, cause or cure. Hang in there everyone!
I still have no answers and it's been almost 4 years. I saw many doctors and specialists throughout the state and had every test done imaginable. They are still clueless as to a cause, treatment or cure. My hair loss has stayed the same but it is still sad. My pain moves around like you explained and for the past week it has been a severe burning pain on my scalp or in my scalp. I wish I had some good news for you, but it seems that no one has any answers. I will keep you posted if I find anything out. I haven't been to a doctor in several years for it because it became a waste of money to go and leave without answers and pay money for all the tests. Hang in there!
I still have no answers and it's been almost 4 years. I saw many doctors and specialists throughout the state and had every test done imaginable. They are still clueless as to a cause, treatment or cure. My hair loss has stayed the same but it is still sad. My pain moves around like you explained and for the past week it has been a severe burning pain on my scalp or in my scalp. I wish I had some good news for you, but it seems that no one has any answers. I will keep you posted if I find anything out. I haven't been to a doctor in several years for it because it became a waste of money to go and leave without answers and pay money for all the tests. Hang in there!
This is such a shame that so many people are in search of a cause and cure for scalp pain. I have had scalp pain and hair loss intermittently for several years now. My doctor blows it off like it's no big deal, and other doctors have told me that I have alopecia or male-patterned baldness. My hair has grown back with occasional moderate shedding, but the pain remains.
I do know that I have fibromyalgia and an autoimmune disorder - these are the only causes I can come up with for my scalp pain. As per a former poster with regard to neck pain...I do have a bulging disc around c5 that is very painful.
I think if we all took note of our "common" disorders, maybe we can narrow down the cause. And of course, there could also be several factors that can cause the same disorder. Best wishes to all for a cause and a cure.
I think it's awful that doctors just shove us away. For several years I was told it was "all in my head" and to go see my psychiatrist. The pain is REAL and if they knew what it was like, they would be searching for answers or treatments as well. My doctor told me that this is a form of an auto immune disorder and I think they said that because they don't know what else to call it besides the typical "Burning Scalp Syndrome"... I have severe eating disorders for over 20 years but they don't think it's related. I have had EVERY test, MRI, CT, tests done and no answers. I still lose hair but like you it comes and goes. It grows back but in a different texture and sometimes color.
It is disabling and it can hurt so bad I just want to die. It has ruined my life and prevents me from doing many things outside because it hurts to wear a hat, go out in cold, go swimming, etc... It has made me paranoid and a recluse. I will keep posting if I find something!!!
I am Kunnal From INDIA.
I was also suffering from the same scalp Pain and was looking for the cure but unfortunately didn't found any thing.
But a few day's back i found this link
it helped me a lot. it refers to the home remedies as well as the medication for the same. If it doesn't works then let me know i'll refer another cure as well.
You could go for another cure method which is natural home remedy.
You need to follow the undermentioned steps for an instant relief.
Step 1st: Get some Garlic Leaves (around 12-15). Crush them and put it in a filter cloths pour a teaspoon water on the same. And press and let the juice flow out of the garlic in a small bowl.
Step 2nd: Apply the garlic juice on the scalp (specially on the painful area). And let it be for 1/2 hour (REMEMBER THAT YOU HAVE TO CONSUME ALL THE JUICE FOR THE SCALP) . After that wash your hairs (NOTE: Hairs must be washed with the Hand wash which we usually use for washing hands because it balances the Ph of our skin and hairs. Any kind of shampoo should be strictly avoided.)
Step 3rd: And here's the magic your scalp pain is gone. If not completely cured then repeat the process again and again with an interval of 2 day's.
Step 4th: Before your next morning bath get some fresh lemon juice squished up and apply on the scalp for regrowth and a good shine of hairs. Let it be for 1/2 hour on your scalp and then wash with the Hand Wash.
NOTE: The use of any kind of shampoo should be strictly prohibited. Because it is having higher cleansing properties which reduces the moister level of our scalp, hence it is not good for the scalp. Instead of that we must use The Hand wash which we usually use in our daily hand wash propose.
Very interesting! I'm not too sure about it because I get scared of any additional pain. Also, I have tried the no shampoo method and if I DON'T have suds, it makes it extremely painful to wash my scalp. I need the suds to be able to even touch my scalp. I have a very bad problem with the pain. If even ONE hair gets pulled (not pulled out) that area will hurt for days. I had to chop my hair to chin length to avoid getting any hair caught in my coat or comb. It is hell but I thank you for your thoughts!
I don't know how you can say that your scalp pain is worse than mine. We all have different levels of pain and I am sorry for anyone who has any level of this scalp pain. Thank you for your thoughts on this issue and your advice.
Hello as I write this I'm laying in bed with my head iced and in terrible scalp pain. A few years ago I was diagnosed with a rare autoimmune disease and while this may be the cause of my pain and hair loss drs have no idea. I take gabapentin and topamax for nerve pain and migraines although they don't help very much. I hate that so many other people experience this pain and have no answers from their drs either. The only thing that ever helps any of my symptoms are steroids and they have terrible side effects. I wish someone had answers for us.
Thank you for sharing your story. After 3 years of doctors and no diagnosis, I was also diagnosed with a rare autoimmune disorder. I think they just called it that because they didn't have any medical answers for my scalp pain and hair loss. They didn't have a clue until I brought in information on Burning Scalp Syndrome. They are calling it that now. It's strange that they have no idea what is causing it or how to treat it. Very frustrating and discouraging. Mine comes and goes and I also have Seborrheic Dermatitis on the scalp that I use medicated shampoos for. I still can't get it cleared up...
Thank you again and I wish you the best! Keep us posted!
If you want an instant cure for the pain then just go for Apple Cider Vinegar. Apply it slowly on scalp and let it be for half an hour for the same. It will definitely .....definitely cure the pain at any cost.
I have tried that and it caused my scalp to burn even more. I even diluted it 1/10 ratio and it burned. My scalp itched really bad today and now the pain is back. It seems to follow some kind of absurd pattern. Thanks for your thoughts and advice! I'm sure that any advice is good advice and it will help someone out there.
I m realy sorry dear for the inconvenience caused by me, but believe me that i wanted to cure this mess from every person suffering from this. Another one is as follows which won't burn your scalp.
Take a bowl and add rose water into it then add lime juice, but remember both must be in equal proportion. Now apply this mixture on your scalp and see the magic, within few days you won’t find a single acne on your scalp.
You won't get any burning or pinch effect on the scalp. It would cure it.
Thanks for the information and you don't need to apologize. My pain has been somewhat under control for now but if it gets worse, I will give your home remedies a thought. Thanks again for sharing as I know you are helping others as well and that is what we all need to do!
Kindly let me know your age, Sex, and are you overweight or not, and are you suffering from any disorder like sugar, thyroide. etc. and do you go for any excercise or any kind of workout at daily basis or not, and what kind of whether is their at your place like very cold or summer.etc.
I am very underweight because of eating disorders. All my blood work, thyroid, etc... is normal. I am pretty healthy except for being underweight. I don't work out because of my low weight. I live in Wisconsin. Weather here is cold in the winter and warm in the summer. Hope that helps.
I don't weigh myself unless it's at the doctors. Last time it was 84. I am 5'2. My doctors have already ruled out my eating disorders as being a factor in the scalp pain and seb derm. They did tests and blood work, MRI's, CT's., etc... They said I am healthy and my vitamins are good so they haven't a clue.
I have been on keto shampoo for months now going through something similar.... I myself am looking for answers and seen several doctors and they all want to give me shampoo and I asked about a biopsy which they did not want to do either not sure why??? The shampoo isnt bad but my head still hurts and itches... but does relieve a little!
How long have you used the Keto? Is it the over the counter or prescription strength 2%? I tried it but it didn't seem to help me. Do you use it daily? I am still having issues after battling this for 4 years. It's miserable....
Tyke-Have you had a scalp biopsy? Sounds like you and many others could have LPP! It what I have been diagnosed with and I had alot of scalp pain and itch but that went away. I have bad Seb Dern and thinning in those areas! I am looking for something to help with it. I cant stand all of this! Please let me know if you want info on LPP.
I haven't had a biopsy because the doctors are afraid that I will be in even more pain. Once a hair gets pulled out on my head, that area won't stop hurting. I would love to learn more about your condition though!!! I am desperate to find help for this pain. it was so bad yesterday I broke down in tears while fishing and my mom had to take me home. I can't be in the sun, wind, cold, etc... I can't wear anything on my head. This started 4 years ago and it's getting worse. My seb derm isn't terrible but it's annoying. My scalp looks healthy for the most part so I don't know if it's a nerve issue or what? Please, if you could, teach me some about your condition! Thanks!
Sorry for the late reply,,,got stuck with a project work.
"Tyke1980" i have gone through all the google results and found the cause and cure for the scalp pain. The organ which causes the pain is Arrector Pili Muscle (APM) present at very root part of our hairs. When the blood circulation gets very low at the surrounding area of arrector pili muscle then it causes the scalp pain as we know that blood supplies all the required stuff for the survival to all organs. That's why the hair part do not get the needed stuff for the same. Hence it causes the scalp pain. I found a shampoo specially ment for arrector pili muscle pain. you just go through the below link and follow the steps along with the shampoo use. Hope it would help you and rest i'll pray to god for the cure of all.
The pain at the top crown area of our scalp is known as Trichodynia.
Trichodynia is a condition where the patient experiences a painful sensation on their scalp. The pain sometimes is described as burning. Often there is an underlying psychosomatic cause, such as stress, depression or anxiety.
For more info. go through the wikipedia kink below and try searching for the cure on google using the word Trichodynia cure.
Reviews says that a low dose of stress reliever is capable to cure the same.
Lpp stands for Lichen Planopilaris. It causes scarring, burning, redness, itching, and scaling. How is your hair? Do you have loss? Goggle the LPP and you can get alots of info on it. I had a biopsy and they said its that but I dont have most of those symptoms. I have the scaling and symptoms with that. I did have burning in the past and just recenet after I dyied my hair and used a SLS shampoo. Do you use organic shampoos? I was using baking soda for alittle while and that really made my scalp feel good. I bought a microscope camera on amazon for like $30 and look at my scalp every day so I know whats going on. :) Maybe you could try that too?
Do you have a sinus infection , last month I had
the same issue got to the point went to Dr. Was on augmeton 10 days 2 weeks after I have same pain with chest congestion sore throat extra.. severe s alp pain is back. How are you coping? Not sure how to find this thread again email me jsherm62 at hotmail. Com
Hello, iv'e been doing a lot of research on severe scalp pain because my mom has had it for years. She has been to a lot of doctors who as usual are clueless and prescribe pain medicine. Then I came across someone who had this pain for 8 years. He relieved the pain up to 80% in the first week by using Margo shampoo with the lotion. Here is the sight: http://www.hair-alive.com I'm going to buy some for my mom and see if this helps. Please read the thread about how it helped heal his head, here is the link: http://www.hairlosshelp.com/forums/messageview.cfm?catid=10&threadid=31114
Hi there Tyke1980, I feel for your suffering (physical, mental, emotional, etc). I've had scalp burning all over the top of my head and down the left side for almost 3 years now just like yours. I first noticed a few bumps... then as time went on, lots of hair was coming out, then... the burning that never left after a day at a hot springs pool. I believe after all the research, doctors, remedies that I've sought out, that this is infeciton related. I've been put on a year of various antibiotics and antifungals with no help but the bumps went away for that time (for lyme disease... chronic). i've lost 85 percent of my beautiful hair and live now with it buzzed and covered all the damn time. This has ruined my life as well, I don't know how to 'love myself' if I can't stop thinking and experiencing this pain. I've gotten my mercury fillings removed recently thinking that would help... I've completely changed my diet, no grains only raw goat milk kefir for dairy, veggies and some meat, with one serving of fruit a day, water, and tea. I've not seen much of an improvement with my scalp except when I was on pain meds for surgery a few times last year / this year. I crave improvement for this awful affliction every moment of my "life". I've been suicidal for sure too many times, depressed, pushed all my loved ones away due to this and how it makes me feel. Something that has helped me is joining alopeciaworld.com for support. You are strong, it is a sick and cruel journey for a woman to go on isn't it? I've had biopsies done... man... you name it, steroid creams, prescription shampoos, organic shampoos, head soaks, rubbing borax on my head... which I do daily in conjunction with a natural psoriasis shampoo, I've doused it in coconut oil, olive oil, turmeric... castor oil, AAAHHH! Even did laser treatments which were super checkbook unfriendly. Please contact me if you'd like to talk about this, nobody really truly understands the impact this has on a young lady.... I do unfortunately, and would love to talk with you and support you through this.
Tyke1980, I joined MedHelp recently and read your post. My whole being goes out to you as I too have the same symptoms as you ! It is has been a long time since you posted this so I am hoping that you get my message and have had an answer to what happened to you and if anything has helped you. I do so NEED your help please. Thanks,
I haven't found anything that has helped yet. I did find that using dandruff shampoos seemed to cause more pain than help. I just use regular shampoos about 4 times a week and the dandruff shampoos on the other days IF I need them. My scalp hasn't been any better with the pain. I feel for anyone who is going through this. I am shocked that doctors and researchers don't try harder to find the cause or cure for this. I will keep you posted if I find something that works! Bless you!!!
Have you tried cutting out dairy? That is a big no no with alot of people who suffer from scaring alopicea (lpp) The paleo diet is what alot do and get some help. I have also tried everything you named beside the laser and wanted to! Do you also have scaling?
First, i want to say that I read this entire thread. My heart goes out to you for your pain and suffering. Second, thank you for keeping us up to date on how you're doing. I was getting really worried during some of the responses, but it sound like you're "learning to live" (I hate that phrase) with the pain?
Im a 27yr old male. I recently decided that I wanted to forgo worrying about hair loss and decided to shave my head. I've been shaving my head for the last year, recently stopped and let a bit of fuzz grow back. During this time (the last 4 months or so), I've been getting extremely sharp, near burning pains in my scalp. Localized to one location or another and usually always on the top, but the pain is transient and throbs for 5-10 min. It'll fade, and sometimes I'll get hit with rapid succession of pain.
My question to you is, is this how the pain initially started for you? What were your very initial symptoms 4 years ago?
Thanks for the reply! The pain started really strangely.. I was at m boyfriends house the night before and his son pulled my hair really hard. I didn't think anything of it. The next morning I woke up and it felt like acid had been poured on my head. That's how it started. The doctors don't think the hair being pulled had anything to do with it. You read my posts so I have had every test done and seen many doctors. They aren't sure what started it all. The pain is usually severe burning or it feel like my scalp is bruised and mushy. They haven't found anything to help. My hair loss has lessened the pain continues off and on. I have tried many things from scalp oil treatments to medicated shampoos and prescriptions. Nothing helps. I can't be in the sun for more than 5 minutes before the pain gets too bad to cope with. The wind hurts and I can't wear a hat. My life has changed drastically as I used to be an outdoors girl and now am inside most of the time. I was put on disability last month mainly because of my mental health issues and eating disorders. I am very sick but I wasn't this sick when the pain started. I was actually at my happiest time in my life when the pain started. I wish I had some answers to give all of us. Adjusting to this new way of life is not easy. I get angry at the world that this happened to me since I already have a mess of problems physically and mentally. Please keep in touch!
Oh my gosh! I have been on Alopecia World for about 4 years! I joined that site when I was looking for answers to my hair loss and the scalp pain! How can I find you on that site?
I still don't have any answers and I apologize for not replying sooner. My internet has a bad connection as I live closer to the woods so it goes in and out.
I have also done all the treatments you have tried spending hundreds of dollars on hopefull cures. Nothing has worked yet. It wounds like your hair loss has been more devastating than mine and I feel for you. Mine has slowed down in shedding but I still have far less hair than I used to.
I have dealt with suicidal thoughts as well but it's something I could never do to my parents. I am single and was at my happiest with a boyfriend when all this happened. I couldn't handle having anyone in my life right now because it is consumed with my pain and I can't do anything anymore outside. The sun, wind, heat, rain, cold, etc.... hurts. I can't even wear a hat and had to cut my waist length hair to my chin so it was easier to wash and less weight to carry around. This has changed my life drastically. I also have mental issues and this only adds to the depression and pushing people away. I just can't get out of my head. I never liked myself and this made everything so much worse. I was such an outdoors gal before all of this and now I stay inside most of the day. I can't work but I do volunteer a few days a week at church and the food pantry. I was put on disability last month mainly because of my mental issues and eating issues.
I wish I had answers for all of us. I have been through every test and so many doctors and so many medications. Such a strange thing...
Please keep me posted and let me know if I can find you on Alopecia World. I check in with that site about once a week. Take care!!!
Thank you for the information! I have tried many things and I have tried something very similar to the product you mentioned with no success. I am so glad it helped your mom. I hope that your information can help others as well!
Thank you. I also researched psychosomatic pain and was put on medication for it and it didn't help. I know that many pain disorders can be related to mental issues or stress but I know this isn't. I was at my happiest when this all started and I wasn't stressed or sick. My doctors said that it is real, physical pain but they don't have any answers. I have the diagnosis of burning scalp syndrome and trichodynia but beyond that they can't help me. They have tried everything and I have spent hundreds on supplements, vitamins, hair products, etc.... I am just learning to live with it as best I can. I have replied to a lot of people today so you can read my other posts to catch up. I hope you are well!
Sorry it took so long to reply. I have had some internet issues and can't always get connected. I am so sorry you are dealing with this as well. I wish I had some answers. I sleep on a satin pillow case to avoid hair pulling. I can't wear a hat, be in the sun, wind, heat or cold. It's very painful and those elements make it worse. I used to be an outdoors lover but now am inside almost all the time. I hate it and it only adds to my existing mental issues. I pray for a cure some day and am learning to just live with it. Please keep us posted!
I have been dealing with the same pain on my head that some of you are dealing with for over 1 year. Sharp shooting pin, a feeling of hot pokers sticking me in my head, burning as if a irritant is being poured on my head. It has caused great depression and I stay in. Besides going to my part time job or to the store, my social life is zilch due to this. I pretty well know what happened to me. Although I didn't see it, a bug crawled into my head and it was nearly 3 months before my own daughter helped me with it as the Drs. I went to told me it was my shampoo and a dermatologist looked only at the front of my hairline and since she couldn't see any lice, she told me there was nothing wrong with me. May I mention that I have never had a problem with my scalp until this happened.Things only went downhill for me. Soon I developed a feeling as if someone was pulling my hair badly like I had tiny ponytails and the pulling was a sharp pain. I have wanted to take my like often since this began and I can really sympathize with all of you who are having this issue. I kept researching on line about what to do if you suspect bug bite on the head. I also felt that I had very sore spots on the crown of my head that are the size of coins. I was desperate and reasoned with myself that I had nothing to lose but to use it and see what happened from there. My oldest daughter used the product on my head. She knew the pain I was in. After 2 treatments with the Nix the severe pulling filling went away. After 3 months of going to Drs. that had failed to anything to help me, I had concluded that instead of saying the truth that they don't know what is wrong with you, they come up with feeble lies as their egos are in the way of truth. I was relieved the pulling went away but I still was left with sharp shooting pain and burning on the crown of my head that sometimes would go into my forehead and behind my ears. I tried Prozac and all it did was make me gain weight, I slept 11 to 12 hours a night and was even more depressed. I wanted to take something to help me forget the pain and why am I alive anyway. I had a friend who was seeing a Dr. who is what is called a LLMD. That is a Lyme Literate Dr. It took me 3 months to get into see him but it has been so worth it. He put me on long term antibiotic treatment. I am not well yet but I have come a long way from where I was last year. I take 2 antibiotics and I have from time to time taken Amitriptyline in low doses. It is an old antidepressant in high doses but in low doses it helps to relive the neurothopy pain and it helps me to sleep but not over sleep. I have a better life today and I am grateful to my LLMD.
Did this happen when you recently moved? Or were you in your home for a long time before that? I have been looking into mine being a issue with my water or my house. Working on that now! I wonder if you have considered that as well?
Hi Tyke. I've got the same type of pain as you. Mine started after a fall where I hit my head.
Please forgive me in advance but I think your doctors are bunkers! I do believe that the hair pulling incident set off your pain. Just like my fall and hitting my head set off mine.
I've tried several nerve drugs and they haven't been much help. I'm doing shots in the head now. When I get the shots the hair loss will halt immediately but will restart as soon as the pain starts again.
I'm searching too; like you. I'm sorry so many of us are suffering. It really stinks. I'm in WI too.
Tyke you have had this horrible pain for a long time. I not as long as you but I never
thought a year ago that I still would be in pain. I posted recently that I went to see an LLMD and I had been on antibiotics for several months. I stopped the antibiotics as the Lyme Western Blot I had was negative and it just doesn't make sense to me that after months of antibiotics that this pain isn't gone. This last week I started back on a low dose of Amatriptiline at least to help me sleep. I also am trying what Paul suggested on stopping all vitamins and minerals and started an Adrenal complex. In addition to this, I am taking Valtrex. Has anyone else tried Valtrex which is Valcyclovir?
Thanks for your insight and suggestions. It's odd that my pain started the morning after my hair was pulled. I had waist length hair and it was in a pony tail when the 5 year old grabbed it like a rope swing. Of course it hurt a little at first but the pain started the next morning. I was told by many that it was "all in my head"... I knew it wasn't in my head.
I also received injections in my scalp called "occipital nerve blocks". They didn't help.
I do wonder more about your pain. My will hurt the most when I am out in the sun or wind or when the temperature changes rapidly. If I get goosebumps on my head it feels like someone is scraping sandpaper over my scalp. The wind also hurts because it blows my hair. It's like all the pain is in the hair follicles and anything that moves the hair hurts. Do you experience this as well or is your pain constant and doesn't change when your environment changes?
Thanks again and I look forward to hearing from you!
I also took all kind of vitamins and supplements thinking I was lacking some mineral or vitamin. They didn't help and I spent hundreds on pills and miracle cures that did nothing. I don't take any vitamins or supplements now except for Vitamin D3 because I do have a low count. I don't have Lymes disease and have been tested for everything else from Hepatitis to AIDS. It was a few years of constant tests with different doctors and specialists and medications. I finally gave up and just live with it. I was sick of getting NO answers and I was tired of wasting money only to get no results.
Thanks for the suggestions and thoughts. I thought about it being the water but I have never moved and I use city water and when I go to our cabin I use well water. I have never had any issues and I know it's not the water but I did wonder about that. I even tried spring water from a bottle and that didn't help. I really don't think it's the water but it doesn't mean that it isn't the cause for someone else! Keep us posted!
My pain didn't start immediately after the accident. I can't say for sure when it started because I had a concussion and I don't remember the 3 days after but by the time I start remembering the scalp pain was there. But immediately after the fall, no my scalp didn't hurt. Of course the fall hurt.
It hurts to wash my hair, brush my hair, dry my hair, lay on pillow, move my hair. Yes, goosebumps or getting upset gives me a sensation I can't explain, it's like pain but yet I can't explain the pain. Yes, the pain varies. My hair is also falling out. I believe that this is some sort of pain syndrome. And you are right the hair follicles hurt and anything that moves the hair hurts it. I haven't had it cut or anything since Feb...can't stand to have anyone touch it...ya know?
Tyke, I read on another health board that a chiropractor had the same problem as we are having. I think the pulling of your hair by the child caused a trauma as did what happened to me when I was bit by a bug. Anyway, Paul, the chiropractor cured himself by stopping ALL supplements. I find that if I even take Vitamin D, I have more pain so I stopped everything as he suggested. All the vitamins and minerals He explained how the adrenals are taxed badly by the stress of life and too many supplements. I bought some adrenal support and started taking them. I also am trying Valtrex which is an antiviral medication. Something is working ! I am getting better! Believe me, I have always been a great believer and taker of supplements but since I was bit on my head by that bug which caused so much stress and pain, every time I try to take any vitamins or supplements I get more pain! I am so glad to be off the antibiotics as I thought this was bacteria related but as you well know when we are in pain we seek every answer or cure that will help. For me the antibiotics did not work and neither did antifungal creams, shampoos, tea tree oil, a host of different experiments didn't work but today I feel better.
I find your post kinda interesting because I have adrenal insufficiency but I am also VERY low in Vitamin D which can cause your pain to be worse. So I don't think not taking the Vit D would help me. It's all very perplexing, isn't it? I know B vitamins and biotin, selenium all support the nervous system and the pain is coming from the nerves. I don't take any of those but maybe I should? Don't know...don't know which way to turn... wish it would all go away...
Hi Josette23, I continued on occasion to take vitamin D too. I take 10,000 units 5 days a week. I did this before my head problem began and had no issue with it at all until I had this trauma happen to my head. Now when I take any B's, cal.mag, D or other supplements, I have some pain. Because B's are nerve medicine as we know it to be, I thought I needed the B's to calm down the nerves or neuorothopy on my scalp but I wonder if the stress and trauma have caused the nerves to be overly sensitive to everything even the supplements. The way the Chiropractor explained from what he learned due to his own head pain is that with too many supplements we over acidify our systems. I stopped as he suggested, all juicing also. funny but a couple of months ago I thought I would go on a bigger health kick and I started making fruit smoothies adding yogurt. I had so much pain but I didn't relate it to the smoothies until I read what Paul had to say, the chriopractor. It turns out that some of the articles that I have read advise against eating yogurt as it can cause inflammation and acidity! And I was eating yogurt a lot !! I do drink coffee which is acidic but I am addicted! I seem to be ok with it anyway. Josette23, are you taking an adrenal since you mentioned you are insufficient? This morning I feel good. Something I am doing is working. I am going to cut back to 10 mg of the Amatriptiline today and see what happens. I took a double dose of the adrenal support yesterday and I sent Paul a message on the health board I read the info he offered on asking him how he is at this point in time. I hope to hear from him and I will let you know. I feel like I am getting my life back and if there is a better adrenal product out there that he took and that I need to know about than what I am taking, I want to find that out and take it.
I would NOT cut back on the Amatriptyline. It really helps nerves and might be what's helping you. I took that drug for over a year after a hysterectomy (the nerves at the incision freaked out and the slightest touch of anything ie underwear, wind, pants, anything, would cause excruitiating pain) after a year or moer of the med and it being completely gone for months I was weaned off of Amatriptyline over several weeks and I was fine but you have to give those nerves a LONG time to calm down. If it's helping you just stay on it. You don't want it to come back! At least that's what I would do.
And yes, my adrenals aren't working, they've shut down because of steroid use (due to my autoimmune disease) and therefore I am insufficient.
Hi Josette23, Thank you so much for your sharing your experience. I will stay on the Amatriptyline for an extended period. Do you remember how much you were taking. Yesterday and the day before I added up to 3000 mg of Vitamin C and I have had some pain back. I have to stay off the supplements. I took it because I read that C of course is an immune building supplement and is suppose to be helpful for the adrenal glads. But it seems that I can not handle it or the other supplements. I do get pain on my head. Are you taking any Adrenal gland now that you know that they are shutdown and if so how long and what kind Josette are you taking. I really believe that when you fell it caused the trauma to your head and all the nerves are damaged as with me when the bug bit me on my head. How long ago did you fall?
I fell last November (Nov 2012). An endocrinologist can test your adrenal glands to see if they are functioning and I had mine tested by my doctor. That's how I found out they weren't functioning. I take prednisone for my autoimmune disease and long term prednisone use can cause the adrenals to shut down; which is what happened to me. Do you take prednisone?
3000 mg's of Vit C is a lot and it can be hard on the kidneys and bladder. Maybe that's why your back hurt?
I wonder if that bug bite or sting got to the nerve in your scalp? Once one nerve is irritated in the scalp the irritation almost seems to spread it's like the nerves "talk to each other" on the scalp and a small problem becomes a big one? My pain started in a smaller area and now it's almost the entire scalp; it spreads.
I don't recall how much amitriptyline I was taking; sorry. I took it @ night before going to bed. I honestly wish I would have just stayed on it. It helped my mood and maybe I never would have ended up w/this problem....
Hi, Tyke1980, How are you. Sorry for the late reply, i was stuck with my PG Studies.
For ultimate relief you must try the garlic juice method which i mentioned earlier. I tried the same for several times on myself. And it worked but the problem is that it works just for 2-3 days only after that the pain is back.
But it removes the pain completely from the crown scalp area and makes your hairs soooo goood like smooth and shiny.
I hav tried this on me so you can be tension free to use it. I know you suffered last time from my suggestion but im really sorry for that.
Thanks for the information! I will consider it. Last night was awful and the pain brought me to tears and taking medication to put me to sleep so I didn't have to feel the pain. Thanks again for all the support and help!
I came across this dialog while doing a little research online related to my head pain. I quickly read over the posts here and wanted to mention that some, not all, of your pain symptoms sound similar to mine. I have been told that I likely have trigeminal neuralgia, where an artery or vien rubs on or compresses and irritates the trigeminal nerve. Has this been brought up for you? I had brain surgery 15 months ago for a different problem, and we think this is an after-effect of that, but some folks just get the neuralgia for no reason at all. And I understand how bad the pain can be. Take care.
My mom had trigeminal neuralgia and it caused her extreme facial pain. However, the doctors did look into that and said that it wasn't that kind of nerve pain. Thanks for your information and thoughts!
Tyke1980 i had consulted to the best ayurvedic doctor of the country india. She is a lady.
And she taught me a kind of massage for ultimate relief in scalp pain without any medicine or any external application.
What we need to do is to take any hair oil (which ever you like). apply and spread some oil on the back side of the neck including little part of shoulder as well. (If the oil is warm then it would give better results).
Now gently massage with both your hands by rubbing from side ways to the centre part of the neck.
Do the same for at least twenty times.
Now do the opposite of that from the centre to the side ways.
NOTE: for best results remember to do the above mentioned massage before sleeping and when you wake up in the morning you'll find a big amount of relief in your pain.
I asked that doctor for root cause of this and she said that a couple of nerves are stretched and the blood and any sense is not properly transmitted which results in pain. She said that daily exercise or this massage is the only cure for this.
If any question further please let me know.
And ive tried this on my ownself. so no need to worry. let it go.
Judy, I just saw your post about Lyme and antibiotics. my daughter is 18 and was bitten at age 7 but misdiagnosed for years. We found out in 2012 it progressed to Lyme encephalopathy in the brain. She has scalp pain and hair follicle pain - her skin is sensitive to tthe touch. However, we recently found out she has co-infections as well... Babesia and bartonella. both can cause scalp pain. Here is why antibiotics won't work...I don't know what you were on, but you must treat both co-infections and Lyme together or they won't go away.
you must also attack the round body cyst form and the only antibiotic that does that is tindamax. So when you attack the cell form of Lyme, it turns into the cyst form and covers itself with a biofilm and burrows deeper into the tissues. Mepron is the usual form of treatment for babesia and Bart is the hardest to treat. My daughter is in the tertiary stage of Lyme, and has to be on IV rocephin plus Zithromax, Doryx (time-released doxy) plus tindamax and actigall ( to prevent gallstones from the rocephine) and has to have liver test weekly and a gallbladder u/s monthly. I am very nervous about having the picc line put in, but it must be done to try and reverse the hypoperfusion (low capillary bood flow to the brain) and hypometabolism (similar to what is seen in Alzheimer's patients) - she had to defer college this year because of the bonecrushing fatigue and cognitive issues.
Because she has hashimoto's, which our LLMD believes is from Lyme, other dr's believe the encephalopathy is from the hashimoto's, which leads to different treatment protocols like steroids (which we would not undertake because it suppresses the immune system which you don't want to do with Lyme...).
I found an NIH abstract that stated matcha tea ( which is a wonderful anti-inflammatory, gets for the heart, thyroid and diabetes) cures babesia in weeks. The problem is that matcha comes from Japan and much of the green tea has radiation. So it's a bit of a nightmare trying to find tea that hasn't been radiated or has less than the 500 becquerels/ kg that the Japanese use as their safety measurement. However, it is still below what the US allows as their standard (1200bq/kg) and WHO's recommendation (1000bqs/kg). It is nearly impossible to find Chinese matcha, and the one company that is touting that theirs is Chinese and not radiated, does not have a good product..
We do use supplements for the scalp pain, and have found that alpha lipoid acid ( which is usually taken 3x/day) has helped with the scalp pain even on the one dose a day., and my daughter's scalp pain was horrific. We stopped the 5000mg of VIT D3 but her levels dropped to 17. The best form is from the sun, and safest time to go out for 15-20 mins a day would be noon to avoid the cancer causing rays. My daughter was not able to do that because the sun made her eyes and head pressure much worse, but now that her levels are down from 34 she will have to get some sun...I'd prefer that over supplements. I do agree the adrenals are most likely stressed, how could they not be with this wretched disease, and that effects everything.
t this pint, I am only giving the antibiotics 6 months (the dr said that since she has had Lyme so long it could take years to reverse the brain issue, but I don't even know iff she'll make it on this protocol for a day...we'll see - slow and easy is the route we will take).
Some people have had great success withe he cowden protocol (herbals sold through nutramedix and developed by dr lee cowden - you can view him on youtube) or the Buehner herbal treatments, rife machines, hyperbaric oxygen and ozone (which seems to be the most promising). This will be a year of experimentation for sure
hey, i had this spot on my scalp which hurts a lot when i oil my hair. i feel like plucking my hair there to lessen the pain. i had once done it, like 6 years ago, but all the hair that i plucked out did not come back, i mean my hair is little thin in that particular spot. is this problem any way nerve related?
You could just be having a reaction to the oil. I can not use oil on my scalp because it makes the scalp worse. The plucking of hairs is more related to habit or OCD in my opinion because I have a lot of OCD issues and it sounds more like that or just a bad habit. If you pluck them too much, they won't grow back. There is an OCD condition called Trichotellomania where the individual feels the need to pull out their hair. It can be any hair but it's mostly head hair or eyebrows. You might want to see a doctor....
How did you find out that your problem was from muscle spasms? Did someone diagnose you? I'm curious because I've been having a lot of the same symptoms as you since Sept 2013 and can not find any answers. It is now affecting just about my whole body and it is awful. Thanks in advance for your reply
I would suggest Betaderm for the scalp...it eases and calms scalp inflammation and irritation (burning, tingling, pain, itching) This is a prescribed medication applied directly to the scalp. It is a lotion applied twice a day.
I kinda know what you are going through because I had sort of the same thing you had. I believe that you are allergic to hair dye. You said that before this pain ever started you had highlighted your hair. This is the cause of your pain. A long time ago I had accidentally dyed my hair with permanent hair dye which led to the worse allergy I could imagine. My scalp burned so bad !!! Each of my hair follicles were in so much pain for days. However I did not have any lesions on my scalp thank God. But what I did was go to my dermatologist who prescribed me an ointment that I would pout on sections of my scalp. This ointment relaxed my scalp making the severe pain and burning go away almost instantly. I also took some benadryl which helped with the scalp burning a little. However, till this day my scalp is so sensitive and painful at times. I have to wash my hair with baby shampoo only and can't wear my hair up for long at all. Also I get neck pains a lot. Anyways I strongly think that your body is responding to a hair dye allergy and you should see a dermatologist so she could prescribe you with a corticosteroid ointment or shampoo wash for your scalp
FOR NOT ONLY YOU TYKE1980... BUT TO OTHER'S ESPECIALLY WOMEN. FIRST OF ALL YOUR HAIR HAS NO FEELING. SO IF YOUR SUFFERING FROM THIS PAIN. I CAN TOTALLY RELATE. TYKE I THINK YOU MENTIONED YOU HAD HIGHLIGHTS. AND THEN WOKE UP WITH THIS HORRIFIC PAIN. AND DERMATITS DOES NOT CAUSE THIS PAIN. SO I WOULD NEVER RECOMMEND USING THE SHAMPOO'S YOU ARE USING.... I HAVE HAD THIS PAIN FOR 18 YEARS. I HAVE WHAT IS CALLED CHEMICAL NEURALGIA... BECAUSE CHEMICALS APPLIED TO THE SCALP CAUSE SEBO/DERM..... I HATE TO SAY THIS BUT I THINK YOU DO HAVE PERMANENT NERVE DAMAGE. EVERYTHING YOU HAVE MENTIONED I HAVE HAD FOR 18 YEARS... I HAVE BEEN TESTED FOR IT ALL. IT IS A VERY, VERY UNFORTUNATE SITUATION.... I JUST WONDER DO YOU STILL HAVE THIS PAIN??? ONE THING I DON'T WANT ANY OF YOU TO DO IS TO HAVE A PROCEDURE CALLED RADIOFREQUENCY DENERVATION... IT MADE ME WOOOORSE.. BUT I'M TELLING APPLICATIONS OF HIGHLIGHTS, OR OVER EXPOSURE TO CHEMICALS TO THE SCALP CAN DAMAGE YOUR NERVE ENDINGS. WHICH CAUSE THIS HORRIFIC PAIN... SO IF YOUR DYING YOUR HAIR, OR HAVING ANYONE DYING IT, YOU MAY HAVE TO DISCONTINUE DOING SO.... A HAIRDRESSER WHO WORKED AT A VERY HIGH CLASS SALON DID SEVERAL HAIR PROCESSES ON ME TO TRY AND GET THE CORRECT COLOR, AND IT FELT LIKE ACID WAS POURED ALL OVER MY SCALP...... I HAVE BEEN ON NEUROTIN, SKELAXTIN, CYMBALTA, JUST ABOUT ALL THE NEUROPATHIC PAIN MEDS OUT THERE... I WENT TO JOHN'S HOPKINS IN BALTIMORE MARYLAND.... I BEG YOU ALL NOT TO GET ANYTHING INVASIVE DONE EITHER.. YOU USUALLY END UP WORSE.... AND IF YOU ASK YOUR HAIRDRESSER THEY ARE GOING TO TELL THEY NEVER HEARD OF IT... BUT THEY ARE LYING.... OVER PROCESSES FROM CHEMICALS, BEING APPLIED TO THE SCALP WILL CAUSE THIS PAIN.. I'M NOT DENYING VITAMIN DEFICIENCES OR LYME DISEASE.. I'M JUST TELLING YOU I SOOOOOOOO CAN RELATE. THE MEDICATIONS HELP.BUT AFTER LONG-TERM USE... THERE ISN'T MUCH ELSE THAT CAN BE DONE. MY DOCTOR SUGGESTED A MORPHINE PUMP FOR PAIN. I'M NOT READY TO TAKE THAT ROUTE YET... I FEEL SOOOO SORRY FOR ALL OF YOU OUT THERE... BUT TYKE1980 YOUR SYMPTOMS ARE EXACTLY WHAT I HAVE ENDURED. IT IS NOT PSYCHOLOGICAL EITHER. IF YOU ARE THE ONE. WHICH I'M SURE IT WAS YOU THAT HAD THE HIGHLIGHTS I WANT TO KNOW HOW THEY WERE APPLIED. IF YOU WERE PULLED THREW A CAP.. THEN THIS WOULD EXPLAIN IT. WHEN BEING PULLED THREW A CAP TO HIGHLIGHT THE HAIR THE METAL DEVICE THEY USE CAN BREAK THE SKIN, CAUSING THE CHEMICALS TO SEEP INTO THE SCALP. IT IS ALWAYS BEST TO HAVE YOUR HAIR FOILED..AS IT DOESN'T USUALLY TOUCH THE SCALP...I WAS TOLD THAT THIS IS A PERMANENT CONDITION... I PRAY FOR YOU ALL.
Thank you for your thoughts and advice! I should clear something up... I did not have the pain after the highlights. It didn't start until a month or so later so it wasn't related to the highlights. The pain still comes and goes but I am getting used to it. I do know people who have had burns from chemical treatments but I truly believe mine wasn't from that. It fried my hair but my scalp didn't hurt during or after the highlights. The pain started over a month later! I appreciate your thoughts. I have taken all the medications and shampoos and I find that that using Suave Daily Clarifying shampoo works the best. I have tried all the "natural" shampoos but they felt no different and I am not willing to pay 4x as much. Thanks for your thoughts!!!!
I had burning scalp and hair loss. My scalp was so very tender I couldn't touch it without pain and it itched. I went to my doc for the hair loss and she prescribed magnesium citrate (in the capsule for all pills, not a hard pill), iodine complex, and zinc. The pain subsided slowly, but the itching and hair loss continued (but not as much.) I added an iron supplement and turmeric caps and the hair loss stopped. I still get itching, but it is slowly improving. I have no idea if this will help anyone else, but it did help me.
This is a first me - commenting on an online community forum - but I felt it was absolutely necessary. I have the same.exact.problem!!!! You described it perfectly, and I've had it since 2009. We are also very close to the same age. The start of my very first scalp issues were while pregnant after having a serious medical scare. It is very much like a cycle, only I've been unable to determine the cause of the start of each cycle. My best guess is stress/anxiety, illness, and possible hormones, though I've had a hysterectomy since (still have my ovaries), so I'm unsure of my hormone cycles at this point. My scalp issue cycle starts with itchy/scratchy, then proceeds to pain that I describe as someone cutting me with razor blades all over, and continuously. There is no relief. It wears me down, and truly is a big burden at the time. Sometimes the cycle moves on within 24 hours to the scaly/scratchy phase, but not always. Today marks day 3 of the knife-slicing pain - though your hard hair pulling description is also exactly it.
I, too, have been to the dermatologist and my primary care doctor numerous times, but I've also actually had a biopsy, which came back with a diagnosis - sit down for this - of "chronic itch and scratch." No, I'm not joking. But that biopsy was taken during a non-flare up time, so it sort of makes sense. If my dermatologist could ever see me on a day like today, I suspect he may have a different diagnosis. He cannot seem to fit me in immediately, but it sounds like it probably wouldn't matter.
Anyway, I wanted to share with you that my ONLY relief I find comes from GENTLE shampooing EVERY MORNING with a "therapeutic" tea-tree shampoo. It's the kind only found at health food-type stores, not any of the big box/chain stores. The fewer other ingredients, the better. If you haven't tried it, I would HIGHLY recommend it. Stop using the Head & Shoulders altogether. I was using Pantene when this all began, and then I switched back to Head & Shoulders dry scalp care, which seemed to definitely make it worse. About 18 months ago, I changed over to Biolage HydraSource shampoo and conditioner, and the scalp issue cycles became much less frequent. In fact this is probably my first super severe issue since I started using it, but I did have a VERY bad strain of influenza type B that took me 2 weeks to get over, and my scalp issues started shortly thereafter. Not sure if that was coincidence or not, but I thought I'd mention it. Seems that a good shampoo and conditioner are necessary when you have this "condition."
After much studying, researching, and constant contemplation of what could be causing this, I believe it may be that the sebum gets trapped underneath my scalp, causing inflammation, and thus putting pressure on the nerves, therein causing the pain. However, I don't understand why the nerve pain is so magnified because of something that seems so trivial. Perhaps because there isn't much space and skin area for swelling before it puts pressure on the nerves? I don't know, and I could be way off base.
While it does nothing for our condition, it is good to know we're not "crazy," and that it's not "all in our heads." Praying we get some good answers and treatment options.
Thank you so much for your reply and thoughts and advice on this. It's been a long battle... I quit using Head and Shoulders because I noticed the same thing....that it made the "condition" much worse and made my hair greasy. I just use Suave Daily Clarifying every day or every other day depending on the greasiness of my scalp/hair. I can't believe how many people go through this and there seems to be no known cause or treatment except that "it's in your head"..... That is the worst thing a doctor can tell someone who is clearly suffering.
I had tried Tea Tree Shampoo from Cost Cutters once before but didn't use it for more than one time. And it's not like the ones you use that are from health food stores. I am on disability and don't have much money so I can't buy expensive shampoos. I do find that the "condition" is a little better when I don't use medicated or anti-dandruff shampoos. Maybe they are too harsh on scalps like ours?
Thank you again for your advice and experiences! I really appreciate it and I know this will help others as well!
My scalp starts hurting usually without a visible reason. Usually it is a part of my scalp which hurts, very rarely all of it. When it hurts, any movement of my hair from the painful area is becoming unbearably painful. It is usually causing severe headaches as well. I'm 35 years old and I think I'm having this symptom almost more than 15 years. So far, I tried to manage my pain with hot showers and anti-inflammatory drugs but not even they are always helpful. Still, there is one thing I do which most of the time eases my pain. I buy a common plastic injector (5cc size is usually big enough) and fill it with a local anti-inflammatory gel or cream (usually Voltaren gel).I don't use the needle and only with the plastic injector part put the cream on my scalp where there is pain and then I massage the painful area with my finger tips until the cream or the gel is being absorbed. This usually works very quickly like in 10 min. One last thing, I heard about botox application to scalp but unfortunately I don't have any detailed information about it yet.
Hi All, I have the same issues with severe scalp pain, itching and hair breakage and shedding. I passed the two year mark of having this affliction and I'm wondering if it will ever get better.
I am also wondering if anyone else had their hair colored at an Aveda Salon prior to the beginning of this condition. I had gone to Aveda for years with no problems, but they were bought out and apparently changed their formulas sometime around 2011. My condition began slowly right after the last time I had my hair colored at Aveda on April 12, 2012. It has spread to the entire top of my head and is painful and itchy 24/7. I have tried all the remedies mentioned here and had a scalp biopsy, which showed nothing. Thank you for all the information posted here and I'm still hopeful that we will all find relief for this terrible problem. Take care!
I am sorry that you are dealing with this as well. I used to color my own hair but never had any issues. I did go to a salon to get highlights about 2 months prior to the scalp pain so they ruled that out as a cause. The highlights did cause all my hair to break off though because they left it on too long. I still haven't found any relief. My hair has been shedding like crazy for the past few months again. If you read my post I was diagnosed with Chronic Tellogen Effluvium which is a hair shedding auto immune disorder. It comes and goes. I still don't know what causes the pain and neither do the doctors. Lately, my scalp has been very tender like bruises and it's sore all over. If I didn't know better I would think there were bugs or tumors in my scalp. Sounds gross but it feels that way at times. Please keep us posted on any updates! I am 7 years into this battle.... Take care!
Hi! I have one spot right on top of my head which hurts off and on.I was searching for answers and some natural simple remedies.I found this blog and was shocked to read all these mails.Never realised so many of you have same or similar complaints and no answers.
I did have lot of hair fall but that was attributed to my underactive Thyroid and low Haemoglobin.
I have cervical spondylosis which I doubt is part of the problem.
God bless and hope you find a solution.
I'm 54 and my scalp started hurting in 2011. Been to a lot of doctors and they haven't a clue. Most will tell me neuropathy or neuralgia. I use Disney's natural shampoo, its the only one that doesn't irritate me to bad. I feel like my scalp has acid poured on it and a million ants are biting it. And even headaches don't feel like headaches. My scalp will turn real pink and BURN. It is a strange situation. It is worse under stress or any emotional event. When it first started loud noises would set it off to hurting SO BAD. I guess I have gotten use to it. I've been on Tralipetal, Gabapentin and fixing to start Amitriptyline. I am so tired of it. Mine has been so bad that I ended up with Gerd and Gastritis. I am always tired the Dr said that the pain is wearing me out. I'm 5'9 and weigh 115. I cant gain weight due to this. The last 3 1/2 years have been from hell. I have spent a ton of money with no answers. I'm sorry but I wish I had answers. I haven't had hair loss though. But the ponytail feeling is exactly what I tell the Dr's also. When I look back mine started around the time I was getting into our truck and banged my head getting in. I had severe headaches for about 2 weeks and this other crap started. You would think as many of us that have this a Dr somewhere would have an answer. Good luck to all suffering.
I forgot to mention that when mine started the tops of my ears burnt so bad that at night I had to cup my ear to keep it off the pillow. Anyone else? Also does anyone have issues with your eyes, nose and throat burning real bad on bad days? It took 2 years before I could read again because my eyes would kill me and I would get severe headaches. I still get them on bad days but just not as much. The sad part about this is that when you try to explain it to someone they look at you like your crazy and really don't believe you. Even doctors. My husband has been the best support for me. At times I was bed ridden with it and he did everything. Its a mystery what it is and I fear it will stay that way. I haven't had a cat scan or mri. Do nerves show up in them?? Summers are real bad for me due to the heat and sun irritating the scalp. I stay indoors a lot. Oh I tried the Head and Shoulders and it killed me. When mine first started I did breakout in small little bumps on the top. And after that I don't get them. Its all a mystery.
Sorry but I keep thinking of things to add. I'm not a Diabetic but when my blood sugar goes up just a little I can tell. It sets my head on FIRE!! I keep my hair about 3 inches long due to the weight pulling on the scalp. I only wash it about 3 times a week at most. I've concluded that this will be something I will just live with. I'm tired of going to doctors and wasting my money for them to just stare at me like I'm crazy. There are a lot of sites that talk on this so you would think there would be help out there somewhere. It seems to be mostly women that experience this. Good luck to us all.
Thanks for the additional thoughts. I am not diabetic so I can't relate to that. It seems like there is a different trigger for everyone. Mine seem to have no real triggers but just comes and goes when it pleases. I stopped searching for answers several years ago because of money as well and always being told it was in my head or that they had no answers. I just learned to live with it and adjust when possible. Thanks again!
hi all! I too have had burning scalp but its all on the left side of head and face. The doctors said too that it was some kind of neuralgia crap. ive been dealing with this for 3 yrs. The only thing i can think that set all this off was Prednisone the doc had me on it 3 different times within a month with no tapering. He admitted to me and apologized that it was "his bad". Anyway the only time it really bothers me anymoer is if i sleep on that side of my head, they have me a on neurontin it seems to help manage it for most part, But the Neurontin has basically made me feel old cause my memory is shot, feel high half the time. I got all the way up to 1200 mg a day and couldnt deal with it anymore and tapered myself down to 900 a day and i dont seem to feel high near as much. I hope we all get an answer soon im tired of feeling depressed and feelin scared all the time! God bless!
I to have given up finding a answer, but then I find myself looking to see if any one else has had any luck. For me its when my blood sugar goes up that it burns the worst. Don't understand that but oh well. I'm in the process of hunting a new shampoo. The least ingredients the better for me. I've started pouring aloe vera juice on my head after I wash it and just massage it in. I don't rinse it either. I'll try anything. Neurontin made me loose my memory also. I used the generic Gabapentin. It wasn't as bad and didn't make me as tired. God Bless.
Thanks for your information! I am on Gabapentin right now. I actually was prescribed it for Chronic Migraines. It doesn't help with the scalp pain though. I encourage you to read my other posts if you haven't already. I have tried everything short of shaving my head. Nothing works. I can't go in the sun or wind because my scalp will be on fire within 5 minutes. I use dandruff shampoos about 1 time a week. I just use Suave Daily Clarifying on the other days. I try to take a day or two a week and don't wash my scalp. Too much washing can also irritate it. I have been on ALL the prescription shampoos the doctors gave me with no luck. Some made the issue worse. I also have Seborrheic Dermatitis on my scalp that started about 2 weeks after I got the pain. This pain came on over night and I was scared. I woke up and couldn't touch my scalp because it felt like my head was in acid. It's so strange the doctors have no clue how this starts or how to treat it. Hang in there and keep us posted!
You seriously need to get tested for Lyme disease at this lab
There are zillions of reasons why the mainstream testing for Lyme and tick borne infections are inaccurate, and why you need to see a Lyme Literal Medical Specialist (LLMD), but I won't go into it here.
I will say this:
The burning ears - magnesium deficiency has caused a muscle spazm someplace on the back of your skull. It's disrupting blood flow - I used to call it 'crunchy ear'.
If you are taking acid reducers for your GERD, this will contribute significantly to magnesium deficiency, which causes muscle spazms.
The fatigue, migraines, vision issues (and related neurological issues), will continue on, and develop into fun new symptoms. If you keep a symptom log, you will probably find that your symptoms cycle on a 28 day cycle.
Get treated for the cause, and this will all go away.
"Get treated for the cause, and this will all go away." If I knew the cause I would. I've been taking Magnesium for about 2 years now. And I don't take acid reducers but drink Aloe Vera juice for my stomach. To my knowledge I haven't been bitten by a tick in 10 or 15 years or more. With the 28 day cycle are you suggesting hormones? I'm 3 years into Menopause.
Thank you, I think I have tried all shampoos. I tried pouring aloe vera juice on it last week and that even hurt. Denominator for me would be neck muscles. I haven't been bitten by a tick I years. And I don't color my hair. Its just really weird stuff.
Just in case it's not been suggested, I was diagnosed with folliculitis decalvans by a trichologist. My GP had tried various remedies and eventually a product called Sebco worked. This was intense polytar. Nothing else had worked and I was losing hair and had a very sore scalp. I was relieved to see the trichologist as well as the doctor, because although my GP is great at most things, this clearly wasn't his speciality and too much time was lost before he settled on the right treatment. Unfortunately, I'm left with a bald patch at the top of my scalp, but the folliculitis has gone. I now have some sun damage through the hair loss, so am wearing a hat at all times and will try and find one with UV protection. Hope you resolve this soon.
Wow. Thanks for sharing your experience! Sounds like you had a tough road. I am pretty sure mine isn't that. I don't have similar symptoms to yours. I think mine is just going to remain a mystery and I am learning to live with it! I wish you the best of luck!