Severe scalp pain

[Tyke1980]

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.

[cantfly]

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...

all the best
T.

[Elogan135]

Go to the doctor and have them do an MRI or CT scan to rule out any issues. If they come up with nothing go to a neurologist.

[Elogan135]

Go to the doctor and have them do an MRI or CT scan to rule out any issues. If they come up with nothing go to a neurologist.

[n40066]

hi tyke.

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!
elizabeth

[Tyke1980]

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.  

I appreciate anything you can do to help me!  

[AsherzAddict]

I see this is an old post.. But I have had morgellons for a little over a tad and for the last few months almosf all my symptoms are gone except for the weirdest, most painful, rarely talked about symptom, which is my hair has been going back u feel my skin. It's usually around my ears and hairline, the hairs closest to hairline and sideburns area somehow ABSORB Into my skin, unlike hair splinters which happen when a falling hair hits your skin at a perfect angle and pierces it like a needle, or falls and sharp end goes into a pore.  No.. Mine just somehow will cling to my face and just disappear under my skin. Lately ,they've  been getting fat tangled up inside my skin, which makes it painful and almost impossible to brush, makes lumps, and what looks like pimples bit is really little hairs knotted together. Last night I crossed for hours and even tried shaving behind my ears, but boring worked, and I somehow ended up getting a mmassive amount of hair stuck u under my skin in my face. I can feel them poking out of my pore everywbere, I can see ugly, tight, wrinkle -like lines everywhere, and I have stranded wrapped around my ear so tight its turning red. I was wondering if any of this stuff happen to you, because it sounds super similar. Ive seriously been debating suicide, and anyone I try to tell about this, or explain why in always depressed and short fused, and always picking at my pores as well as messing with my hair, they laugh and don't really see how it could hurt that bad. But it does. The stinging and pulling, and people looking at me weird cuz I'm 26 and it looks like I have wrinkles, which are covered in Lil tiny scabbed holes. I need help soon, for I really dont think I can do this for much longer.i just pulled a hair out of my face&felt it get caught and tighten on another hair on. The opposite side of my head. God.... I'd rather have Cancer. At least then I'd get help and answers. I hope you're doing better, maybe one day ill be pain free and beautiful again.

[Dr Sharma]

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.

[Tyke1980]

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!

[Larristd]

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!  

TL

[Tyke1980]

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.

Thanks again!

[sonaaulakh]

Dear Doctor,

I am having scalp pain since last 2-3 years and hair fall also since last 7-8 years. This time pain and hair fall has increased. I am afraid of this pain n hair fall. Please advice.

[eiwhitey]

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.

[Tyke1980]

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!

[emmaee11]

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

[Medavinci]

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.

[gm360]

I understand your daughters symptoms as I have the same. How is she now? Let me know how to get in touch with you.

[Tyke1980]

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!!!

[TriTracy]

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.

[Medavinci]

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!

[Tyke1980]

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...

[ashkike]

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.

[Tyke1980]

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!

[danielle590]

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 :(

[Tyke1980]

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!

[danielle590]

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....

[Tyke1980]

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!

[sanisheikh234]

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.