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.

[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.