Women’s Hair Loss Project

I’ve always had scalp burning/stinging/itchiness since I lost my hair, but I know a lot of people with Totalis that have no problems at all. Does anyone know why it would be different for people with the same condition? :S

Hello,

Just a question… Do you notice anything where or when your scalp hurts?

When my scalp hurts, it happens in patches that become red or bumpy. There is usually one hair or a group of hair that is very tender. When it falls out, the bulb is white. Sometimes the hair is brittle and literally snaps off. The feeling is almost electric or tingling. The tender spot hurts, alot.
When I had more hair, it would be so agonizing trying to find the tender spot, and dealing with it. Now I have less hair, I can usually find where the problem is.
I have no idea what to do?!?! I wish I could numb my head with some anagelsic or something?? I know the relief will happen when I find the tender spot, and do something to ease the sensation. I have tried ice packs, doesn’t help. Sometimes washing the hair helps.
My dermatologist put those shots in my scalp, and that helped for a week. I’m trying Sulfa 8 now. It works okay but the smell is annoying. Thick cream like Black & White also seem to alleviate some of the sensation. I get desperate and try anything–I asked my dermatologist what to do and she said “Whatever works”. Any ideas?

Blessings, Lynn

Millie: What did the doctor say about the burning and pain when you went for your appointment the week of the 17th? Do you, by any chance also have a ‘tight’ scalp?

Suffering right along with your for the past 20+ years,

Pam

Diana and Millie,

This is EXACTLY what I’m going through! I felt a sense
of relief (and validation) reading your posts because my doctors are baffled by my hair thinning and little hairs constantly growing in that feel like they had been shaved or something) it feels like stubble. Three of my doctors had no clue but gave me Rx’s for $200.00 worth of cortisone lotions and potions that made it worse! I was petrified I’d go bald. I felt this ironic because my hair was normally too thick! Now it’s scraggly and lifeless and when it’s windy I can feel wind on my scalp!
My scalp is tingly & numb-ish and burns (at the same time) and I’m always aware of the feeling. I have
Telogen Effluvium and today found what Trichodynia
was! It’s taken 6 months to find out other people have this! I don’t have to suffer alone!
I think my doctors think I’m crazy! All told me that as women get older their hair thins out. Ha! 1/2 of it?
and what about the weird scalp thing? No answer from any of them.
Anyway, thank you ALL for your posts. There’s a really gentle shampoo my doctor gave me called DHS shampoo that is so gentle and sudsy and makes your hair fluff up when you blow it dry. So far, that’s the only thing that’s made me feel better.
I’m so sorry we have this and hope it will eventually stop. We’ve got to be optimistic!

Blue 1

It has been so good reading these comments. I have been on HRT for two years or more and recently due to ear problems, was put on gabapentin for eight weeks. I have just recently noticed hair loss, with a burning sensation on my scalp, something I have not experienced before. I am losing a lot of hair at the back of my neck. It hurts so much and am stressing out more due to hair loss. I have stopped all my medications. Your posts have comforted me.

Well add me to this. It has been several years now with absolutely no answers. My pain at times is debilitating, scalp gets pink. I have lost about half my hair with a painful reminder of the loss daily in my scalp. Anyone try steroids yet? I can’t take much more of this pain

I am a fellow sufferer of burning scalp, and share all the similar symptoms. (Until I figured it out!!) By far the most miserable experience of my life, and had driven me to near suicide at times. After 8 years, I finally figured it out, and I wanted to post this note just in case my thoughts can help other people. My first experience with this was 30 years ago when I was in high school, and it disappeared as mysteriously as it appeared. I will say that my scalp now feels great, and as it heals, I am expecting that my hair will grow back. I believe that the health of the scalp and hair follicles will yield itself to the hair regrowing, and even if it doesn’t , I will be happier with out the burning and pain. To sum up my experience, I believe that it is due to a malfunctioning liver. This is only speculation on my part. I have been an avid vitamin and mineral taker through the years, along with herbs, juicing etc. It turns out that as this condition got worse, it seemed that everything I took aggravated the problem, and made my scalp worse. When I completely stopped taking all forms of supplements, vitamins, minerals, herbs, oils, etc. my scalp would heal. Then, I would start taking vitamins or mineral, etc, and it would all come back again. Then it would take literally months for it to calm down again. I believe that my liver simply does not tolerate the extra load of having to metabolize all the vits and minerals. Along with the scalp issues, I have had severe anxiety and depression. In the past I took Prozac, and had good results, and I always noticed that when I was healthy emotionally, my hair was also heatlhiest. So, about a month ago, my doctor put me on prozac, and it seemed to stimulate my liver function, and I am feeling better in all respects. So, if you want to try what I did, try getting off all supplements of every kind, this includes herbs and oils, and try an antidepressant. All the supplements that I took were actually causing the problem!!!!! no kidding!!! Good luck, because I know how much you are suffering! Paul

I have had this burning sensation in my scalp in certain spots following or even during a hair loss shedding. The scalp feels tender to the touch even if I happen to move a hair from right to left…. really painful to the touch. I have gone to a doctor who told me to go home and count how many hairs I lost… put the in an envelope… and call him .. that this is normal for my age… (63) I have had considerable hair loss and now my hair is thin in certain areas. It seems to to subside at times and then the pain intensifies… I have gone to another doctor and they don’t see anything wrong… this doctor even went as far as to say that he doesn’t see any thinning or redness… Help!

I have had this three years and lost so much hair. My scalp in the nape feels like someone cut me with razors. My crown feels like someone poured a severe irritant on it. My doc went as far to put me on plaquenil which helped somewhat but I also am cranking out heavy facial oils and scalp has an odor to it. Logically one would say hormones but which one? I went on the pill for 7 or so months and my pain got worse. I am so tired

Maggie, it sounds like you’ve had a terrible time lately! I’m so sorry.

My sincere feelings go out to all of you. I have experienced scalp pain on and off for a few years. Never thought much about it until recently. I do believe it has a lot to do with depression and anxiety. Even though we live in an educated world about mental health I still feel uncomfortable talking about it. My mother used to complain about her scalp hurting, or rather her hair. It could be hereditary?!! I take an antidepressant and something for anxiety but really…I hate loading my body on this stuff.

I just had my third child 01/09/2008 and after about 6 months my hair started coming out. “Hormones are the reason” said the doctor. Stop breast feeding and it’ll stop. So I did. Now a year later, it’s coming out more and my scalp is so painful I can’t lay on it at night without taking a muscle relaxer (for migraines). I’m a very stressed person and I think that might be the issue here, but I’ve been on Lexapro and Wellbutrin SR for years and I still have this loss. It’s to the point I have handfuls in the shower or if my daughter “pulls” at my hair is all comes out. I HAD thick hair for years but now bald spots. HELP! hairloss doesn’t help to my anxiety and stress right now either. I literally feel your pain guys!
Melissa

OH MY GOD!! Finally an explanation. I thought I was going crazy! I was up all night because of the pain in my scalp. I don’t suffer from hair loss but it seems every time I wear my ponytail too tight I suffer the next day. Actually, I try to be very mindful of how tight/loose the ponytail is but still, there are times when I guess it’s not enough. The pain is excruciating. The pillow hurts, touching my head hurts etc.. It usually subsides wthin a day or two. “ponytail syndrome” makes sense to me. Also, I’m 39 and have been suffering with depression and anxiety since I was a teen. Stress/anxiety seems to affect my physical well being also. I suffer from IBS. I have low thryroid (hashimoto’s thyroidosis type) and Epilepsy. The more stress I have the worse my syptoms. The list of physical symptoms goes on.. The moral of the story is I guess my current stress level is also affecting the level of pain I experience in my scalp. It seems to be precipitated by the ponytail.

It seems like what I’m reading is all the same…in one way it’s encouraging to see I’m not crazy or alone in experiencing the sudden hair loss with extreme scalp pain (I just turned 35…it began last year…), but in another way it’s almost discouraging to see how many other people also are not getting “real” answers from their doctors or seeing relief.

I was told last year my hair loss was due to rapid weight loss (and here I was thinking I was go wonderful to lose 70 pounds in 3 months…) and stress (my living environment at the time was awful…). I was told the slight pain was due to dandruff and told to use T-Sal shampoo.

Cutting my hair shorter (which I hated…) over the summer seemed to help.

For awhile.

Now, I am in agony to sleep or even move my hair as I style what’s left of it. I have the same burning sensations others have mentioned, but no redness (although I do have a ton of flaking, but’s sticky, not dry…). My hair is totally falling out and I can’t seem to find a doctor who can tell me why or if I can get my hair thicker.

I can see major scalp at my part and my hair has the look of a 60-70 year old woman, yet I’m 35 years old. I don’t feel stressed now with a great home and life (except for the hair/scalp problem…). My weight is being maintained and I cannot discern anything that would cause this.

WHY are there no answers? Has ANYONE got news of their pain ending and hair growing back? I need some hope. I’ve prayed and prayed, even admitting to God that asking for hair might seem trivial…but I honestly am in tears almost daily over this.

I do take Klonopin daily, but as I’ve taken it for over 6 years, I tend to discount that as a reason. One thing of minor note I read elsewhere was alcohol consumption could be a cause. Well, sorry, but when I see my hair I want to drink. Has anyone else seen this correlation? Should I give up alcohol? Although to be honest, it’s almost ironic because when I lost all that weight the main thing I stopped was wine…and that’s when my hair started falling out. So, again, I’m confused.

In severe scalp pain and hair loss trauma…but confused. I just wish I had some hope.

I have been having hair loss for 5 months now, had all the tests, iron slightly low and have been supplementing ferritin is coming up slowley but I have not had any decrease in the shedding in the 5 months. For the last 10 days shedding has got worse and now I just pray to see the amount of hair that I lost prior to these last 10 days, I am not sure if it is that I am exercing more and sweating more that I am loosing more hair. Just after washing my hair today, my legs are like jelly and I am shaking and thinking this is the way I have to start my weekend off, I just am so down and do not have any energy for the kids and just want to be by myself, I hate the days that I wash me hair and just see it coming out. I now have 3 weeks to go until my scalp biopsy, it will then be going on for 6 months solid.

I feel so down.

I am right there with Bees. I have quite literally come to dread “hair wash” days. And me someone who used to wash my hair daily without giving it a second thought! I also have the “jelly leg” effect after I get out of the shower just knowing that as I’m putting on my makeup and attempting to somewhat style my so-called hair the sink will be full.

I don’t seem to have any “spot” of clump-type loss (other than my part where my front bangs/side part separate and there is about an inch almost circular area of scalp that shows on that side…), as my hair seems to be rather uniformly diminishing. Lately, though, my crown is seeming to show more often than not. If anything, the majority of my hair loss seems to be coming from my nape area…and just not growing back. Hair on the top and/or side of my head seems to grow quite healthily…to a point at which it too falls out. I find that somewhat odd.

Along with everyone else, I’ve had so many tests, I thought my doctor was a vampire. And I actually HOPED to fail one or two of them! Just for an answer and a solution. But no. I LOOK anemic, but while my iron tends to low, it’s not low enough to “officially” count…I’m just Nordic pale. All hormone levels are normal, no cancers, my thyroid is functioning on the lower end of normal…but again, “officially” normal. My weight-to-height is normal and no longer variable.

I was told (I suppose she meant to make me feel better, but as your hair falls out at age 34-35…no such luck…) that blonde hair “is generally much finer and more prone to appearing thin as well as falling out earlier in life than darker hair…” by my hairdresser. Whatever. She also said that there is a big difference (supposedly) between dandruffs. The dry, ichy, flaky kind and the wet, painful, gooey kind. I apparently have the latter. She claimed every place I screamed at her touch was covered what she likened to “ear wax” patches but on my scalp. Truth to tell, I though she was a little insane, but I’ve been really LOOKING at hairs falling out, and each one has the root bulb on the end ALONG with a yellow-white clump of gunk. HUH? I wash my thin hair well…or so I thought. WHAT IS GOING ON?

As for the doctors, so far (and I have another appointment 03/16 with a FEMALE this time, whom I hope is more sympathic…) have not really cared. To them, it’s just, “Yep…sorry about the pain and hair loss. Sometimes it happens.” I tend to think of it as a doctor telling someone they have cancer and it sucks. I’m like, “That’s it?”. No help? You’ve GOT to be kidding.

For me, it’s not about vanity. It’s about mental health. My young son is high-functioning autistic. I have GOT to have something in my life go right. I can’t live in constant scalp pain, hair falling out, crying all the time…my self-esteem has always been extremely low and this is NOT helping. I’m already on my second marriage which is falling apart as I type this…what else?

I own a wig that I can’t wear because I live in a high-wind area. Even with the mono-filament weave, I might as well tattoo “I’m wearing a wig at age 35 because my real hair is pathetic” on my forehead. That’s assuming the thing would even stay on my head in gusts 20-40 mph here.

There has GOT to be some explantation and solution. Know what the last doctor told me when I asked if my hair might grow back if I bite the bullet and really scour my scalp despite the pain & hair loss it causes? “Anything is possible”. HMPF. So is finding another doctor.

PLEASE: someone. Hope? Has anyone re-grown hair after the painful scalp and hair loss & KEPT it? Should I do as my hairdresser said and worry about the scalp care first despite it making the hair loss worse initially? She claims that the scalp pain should be 1st concern and once it’s healthy the hair will come back. But I worry and so a part of me that hates to even touch my head in pain and shock at how many hairs come back on my hand just wants to hold on to any strand I can for even 1 more day!

In the meantime, I will look up those JASON products. I’d been using Paul Mitchell “Strength” line…but I’m willing to change.

i m also suffring 4m the same problem i guess we first get our eyes cheked stop using computer too much, eat properly , drink water alot, keep your mind stressless…. be happy and do some meditation. may be it will help..i have startded doing this .its just 1 week now, hair loss is a little less…

if any body finds the treatment plzz post as soon as possible…
we all need if.

Hello to everyone,
I am new here because I was searching for answers to my sore scalp and very thinning hair. I thought it was my blood pressure tablets, the fact that I go dizzy when I lay down..or that a couple of months ago I decided to use a mousse on my hair and then all the problems seem to start then. I also thought that I got sunburn on my scalp…but now coming here and reading all your problems I am even more mystified. I use a cold tar medicated shampoo now and that seems to ease the burning sensation. My next step today is to find a site that shows acupuncture pressure points so that I can try that, then see the doctor to see what he thinks. Last year I had very high blood pressure with nose bleeds so the increased medication may be my problem. I would like to buy one of those laser treatments but at $1400 it is a bit too much at the moment. My burning sensation is light and not as painful as some people here. I think the mind is very powerful and I am going to try and not be fearful or dwell on the negative too much…see a positive outcome in my fighting this new situation.
Anne

Hello everyone,

I am having the same problems you all have, I have pain on the top of my head, migraines, hair loss and I have just been diagnosed with depression. I had a hysterectomy last November and ever since them I have had all kinds of problems. I am starting a new treatment for depression, I let you know if that works for the scalp pain also. I would only recommend to check you hormonal balance, that could be causing the hair loss and consecuently all the other problems.

Nadia

hello everyone,i also suffer from pain on my scalp and hair loss.it began in december of 2007 after my daughter got married.there was alot of stress because she moved to a different part of the state.still learning to let go.anyway i went to the doctor and he told me that he had never heard of the pain that i described—how could he—he never had his hair in a ponytail—at least i don’t think so. i had been taking 1500 mg of calcium a day and probably more with eating yogurt and drinking milk.i think i might have been overdosing so i stopped the supplement and my scalp doesn’t hurt as much but i am still losing hair.i hope that this will help you.i will keep checking back to let you know if this was my reason for the pain—thank you for letting me share my story btw i was taking the calcium on the advice of my doctor who was concerned about bone loss

I too have hair loss and scalp pain. It started 6 months ago after suffering emotional stress from the death of my father. I noticed hair falling out and 2 coin sized hot pink bald spots on the top of my head. I became even more stressed. My dermatologist diagnosed Alopecia Areata and treated the patches with cortisone treatments to encourage the hair regrow. I now have many balding spots and terrible scalp pain, burning, tingling, electric shocks, itching. No one has yet been able to explain or treat the pain. This condition has been degrading and depressing dealing with my hair loss, but the constant pain is almost worse. I have been searching for an answer to arrest it. I think acupuncture helps and anything relaxing that takes your mind away from the nagging problem. I am trying low level laser lights to stimulate hair growth. My doctor thinks the condition with stop, but can’t tell me how long I will endure this. My prayers are with all of you out there dealing with the same. It’s helpful to know I am not alone.

For “painfulhead”: what do you mean by “the immune response” causing the pain? I am just curious. It seems that if our immune system is making our scalps go crazy that a good long term course of prednisone would suppress that immune response and bring us painheads some relief. It doesn’t make sense to me WHY we are having these awful sensations in our scalps. I know other people(men and women) with thinning hair and none of them have these horrible sensations!! Does anyone know if prednisone is hair friendly or not? I have got to have some relief!! I am on estradiol and prometrium(6 weeks now, but I was told it would take 2 - 4 months to see the benefit hairwise). Best wishes to all. I feel your pain - A BIG OUCH!!

Me again. The only real good news I have is that I saved my marriage stress with a puppy. Who knew? My husband had always wanted a German Shepard, but with an autistic child (despite how high-functioning he is…) I didn’t think a large dog in his face 24/7 was a good idea…especially since I saw how badly he reacted to my sister’s Husky. *chills* But after loads of crying and almost divorce-impending moments, I remembered my son did WELL with my mom’s Corgi. So, now we have a little (literally, she stands about 8 inches…) Welsh Corgi. Everyone is happy. One stressor down, about 50 to go.

Anyway, back to the hair loss, burning, severe pain, etc. I did see my dermatologist almost 1 month ago. I was told my 1st (male) dermatologist was a moron (which I kinda knew…) and that what he had told me to do had made my head worse. She diagnosed me with SEVERE seborrehea dermatitis (not 100% sure on my spelling…). The first doctor was treating me for simple dandruff, which was making the other far more painful because they are completely different conditions (most commonly known as “wet” vs “dry” dandruff…).

She put me on Clobex shampoo 1X per day and Clobex foam 2X per day along with rather strong prenatal vitamins. I was told to avoid heavy build products (no mouse…which I don’t use anyway, light on the hairspray…gentlest brands I can find, and to only blow-dry when necessary).

I will admit the Clobex is a bit of a double-edged sword: it is a STRONG corticisteriod and causes loads of side-effects (weight loss, slight vision impairment, dizziness, lowered immune responses, and hair actually temporarily falls out WORSE than before…).

However, my scalp NO LONGER hurts. At all. And all the crap on it I’d never noticed because it wasn’t shedding like traditional dandruff (it was plastered to my head like ear wax, blocking pores and not allowing hair to grow once it fell out in it’s normal telogen phase along with additional fallout from high-stress…) is OFF MY HEAD. Now my scalp looks so healthy!

But, I have to admit, I see ZERO new growth. Sorry. I wish I report a miracle, but I can’t.

The doctor did take a biopsy (which hurt like hell…can I type that word?…) and stitched up the back of my head for a week. Oh, that was FUN. But I’ve not heard back on the tests from that yet. She’s checking the obvious like cancer, lupus and various forms of alopecia. But she’s saying as of now, that she has already seen such improvement, that she feels there is no reason my hair won’t grow back. Perhaps not to my age 20 thickness (although I don’t really know why not…I’m only 35…), but she cautions patience. The other tests of the biopsy are for follicle viability…to see out of the area of scalp sampled how many follicles are still healthy and capable of growing/sustaining healthy hair. She says the ratio should tell me an idea of whgat to expect in terms of hair re-growth. In other words, if all are scarred from the condition or a form of alopecia: the hair will not grow back ever and continue to shed all over. If the ratio is that MOST are healthy and fine, then once the condtion is clear and STAYS clear (there is no cure for sebborehea, only treatments and it can flare…usually in winter or in states with vast differences in winter dry winds and summer high humidity, like where I live on the Northeastern Coast…), then the hair should come back at almost close to ideally normal. I guesss she’ll tell me on the 13th. I can post if anyone wants to know.

She says once the Clobex is totally done (on April 13th for the shampoo, I’ve already completed the cycle of the foam…), she will either move me to another RX shampoo or simply to Selsun Blue with a rinse of Nioxin 2-3 times a week. I will be on the prenatal vitamins for 6 months to one year.

I will say this though: what hair did NOT fall out worse with the Clobex is honestly healthier, shinier and stronger. Hair in my nape area is glossy and thick. Although ironically, the reverse is true for my bangs/part on top of my head! Before, that part was fluffiest…but after the treatment, the top of my head looks like a 70 year old woman’s head. I suppose because that’s where most of the “scales” were and removing them took the hairs (which in that area tend to be rather wispy anyway…). I think it looks awful, but everyone lies and says they don’t notice because my hair is so light that the scalp doesn’t “stand out” as visibly as I think it does. Right. It almost looks like pattern baldness beginning up there, but the doctor swears I’m being melodramatic and the medication caused some added ” temporary thinning, but I see no legitimate BALD spots at all”. Sure.

My point to all of this is: I think a great dermatologist is KEY. Since most of us cannot see our own heads in their entirity (even with a mirror…), and male dermatologists (my apologies to any men here…) seem less than inclined to be sympathetic to hair loss…I reccommend a female.

And try to rule out the seborrehea. Believe me, I never thought that is what I had because I couldn’t SEE it. But once she pointed it out and the treatment began…I could. And don’t let it go, because left too long, the follicles will scar and no hair will re-grow even if it was once possible. Plus, why have pain if you don’t need to?

I admit, I’m not pleased with the side-effects of treatment and it’s been a bear, but NO PAIN. Honestly. And a nicely scented Island Breeze Selsun Blue rinse a few times a week is cooling along with the treatment (although you don’t really need it with the Clobex…Clobex is a cleansing shampoo enough by itself as well as a treatment…). Just check you medications you are already on because I think high-blood pressure contra-indicates it. My blood pressure is amazingly low (which is another factor in hair loss…), but just tossing that out there. I don’t think anti-depressants matter, since I take Klonopin (although technically that is a Benzo for anxiety…).

Just wanted to share my 2 cents about the awful pain. Oh, and just recently, I’ve not been losing (although I don’t know I’ve got much left to lose even though everyone around me tells me my hair looks 100% fine to them…gotta love those sweet little ‘ol liars sometimes…) when I shampoo my hair and comb it! Well, except for my bang/part area…but that is where I “style” the most, so I suppose that’s why. But regardless, it is better. No new growth, but I seem to be hanging onto what I have with more success. If only my bangs/top/crown/part will fluff up and grow in I’ll consider myself a happy camper. Until then, I have a ways to go. But I feel the path is finally laid out.

Best wishes and I hope something in here helps.

Still no pain, burning, itching or “pulling” sensations anywhere on my head at all, whatsoever. And now that the Clobex regimen is done…also no increased hair loss or shedding over what I already losing prior (which is still more than the average 35-year old female…).

Biopsy results. Here I had a mixed bag of good news and bad. Good news is that the main finding was the seborrehea dermatitis (which incidently is 100% clear now..) diagnosis. Also good news is that there was no scarring found on any sampled hair follicles…they were all healthy, but inflammed down to the pupa. However, the bad news I consider to outweigh almost all of the good. Main diagnosis: Androgenic Alopecia. Yep. No cure, no nothing. Absoutely not a thing I can except work with what I have and try to keep it as healthy as possible.

Since this condition is supposedly genetic and my father has a full head of hair at age 66…I called my mother. She was so upset because ever since this issue started with me losing so much hair last year, she hadn’t wanted to tell me. She has the same thing. She said she began having EXTRA thin, wispy hair at my exact same age of 35 (she’s now 67…). She asked why I’d never noticed it, and I said I just thought it was her typical hair. I suppose we DON’T notice that unless it’s OUR head. Plus, again, on fair-skinned Nordic coloring persons with VERY blonde hair…the thin, wispy hair just isn’t as “in your face” I think. I mean, it’s harder to see the scalp, because the hair itself is so pale. Plus, my mom has always curled her hair, and I guess that gave the illusion of volume. Me? My hair won’t hold a curl to save it’s life. Straight and fine. I can’t even put my hair up in clips because the pieces slide right out of any barrette or item I use! In fact, when I was a Police Officer and the Department required my hair be restrained so as to not be able to be grabbed, I tried a bun. I went into work all smart and sleek with a cute little bun. After the first fight response call, my hair was down around my shoulders and I looked like I’D been the loser of the fight LOL. I ended up having to cut my hair because of that. But I digress.

Hair (or lack thereof…). Now, I am on Ketoconazole 2% shampoo for 3 months 2-3 times per week to be used in conjunction on “alternate” days with either Nioxin brand products (or the less dermatologist recommended Nexxus Vitatress brand products…). Ketoconazole 2% is generic for the more common name Nizoral. It IS available OTC in a 1% formula and is gaining in popularity to Rogaine for people with this type of Alopecia (where the hair is thinning all over and not in specific “bald spots” which makes them less likely clients for hair replacement surgeries…). It is easier to use than Rogaine, and unlike Rogaine hair that grows back in most clinical studies has been proven to NOT fall back out. The hair grows thicker and embeds deeper into the hair shaft with this shampoo. It really sounds like a great product that removes sebum (the culprit of seborrehea dermatitis…) and is extremely cleansing. Since it is not a steroid, there are not the side-effects like with Clobex. But in my case, I had to clear the fist problem in order to address the second.

I just wanted to post this update. I should know something in about 6 months about the hair growth, although studies claim visiblely less shedding is obvious in 2 weeks. Wish me luck…I wish it to you all and I really hope some of my experiences and products/treatments mentioned will help or something. I know how much better I feel already just without the pain. If I can get some hair out of it…wow. But right now, I’m just praying. God bless.

To my fellow sufferers - I felt so alone when the burning and pain started in the top of my scalp several months ago. No one I spoke to had ever had anything like this. I knew it had to be related to my hair loss which has been going on for almost 20 years. The 5 or 6 dermatologists I saw for this particular problem said that except for some redness they did not see anything wrong. I was put on cortisone drops which frankly only gave me mild relief. However after time the scalp pain has clearly coincided with a very rapid hair loss at my temples, hairline (which has receded about 3/4″ in last last 3 months and the crown of my head is extremely thin. Considering that up to this point the hair loss was slow, this dramatic change has me near tears every day. I feel that the pain must be a result of the follicle going through major changes. And when I touch my hair and the hairs just come out 5 or 10 at a time, I notice that the bulbs at the end are very large. I suspect that this means the follicle is gone.
The strange part is that I am not completely bald. I have diffuse thinning with hair minuturation. It looks like I have the hair of most 6 month old babies.
As bad as I felt before, I am amazed at how much worse I feel now. I find myself retreating from being in public when ever I can. The thought of going on a date scares me to death. I have worn a beret most of the winter but I live in dread of the summertime breezes when berets are not really an option. I have a list of places to go to find out about a wig topper. Has anyone gone that route? How do you make sure no one touches your head?
Despite going through this for so long I have not come to any peace about it. And I won’t take anti depressants because with my body chemistry the shedding is intolerable.
Boy did I need to rant a bit. Thankfully there is a place where I know others can understand, even if it’s not exactly the same, the torture I feel on a daily basis.

I was aware of my hair loss, so i disregarded it because i would put hair moose in my hair to get it nice and curly almost everyday, so i cut down thinking that -that was the problem. Untill three days ago when I straightened my hair for my grad photo :(. the next day i tried to part my hair from the right corner of my forhead (to make my hair seem fuller) when i felt this EXCRUCIATING pain. and i was just shocked.but most importantly depressed. I had been growing my hair for up to 9 months which is now just below my breast and all i think of everyday is cutting it off:( because of how bad it looks and feels near the scalpl. I dont know what to do. I have tried oiling my scalp but i only get temporary relief from the pain. I have even stoped washing my hair everyday and blowdrying to prevent loosing all the natural oils from escaping my scalp, but once again only have gotten temporary relief..now I dont know what to do, CUT-TREAT or just wait cry.

Elizabeth,

I read your post and I agree with alot of what your saying. What caught my attention was the insulin resistance/yeast explanation. I have an overgrowth of yeast my derm actually saw using a woods lamp, it shows overgrowth, apparently I am covered. Also I have high cortisol which feeds the yeast and I am sure a hormonal problem since I am very oily. Extremely oily in fact. So I think I have insulin resistance and all this hair stuff. Can’t way which came first the hormonal issues or this condition brought them on, non the less I avoid sugars and alcohol and am looking into low dose metformin. I was low in oil probably due to this imbalance and inflammation. I am taking b12

I will look into the melationin as well since I am not a good sleeper. How is your hair holding up now and have you done much different lately?

Hello,
Absolutely crazy, I always thought it was just me and my mother with this problem. However, I see we are not. That’s good news,Because I can have my husband stop looking at “that spot” on my scalp. Two, I now know it’s best not to go to the doctors for this painful problem. Because, they dont seem to have a reason for it either. I dont have the money or time for that. My mother and I have always associated the pain with our monthly periods. because that’s when it’s the most painful, and the pain seems to go away immediately after it starts. I also noticed when I’m stressed it bothers me really bad. I have really bad hair loss.( But friends and family say I pull it out) some of that is true because I tug at it to relieve pressure or tingle feeling. my hair is really course, and very thick. I have tried cutting it all off, and that seems to help. After three months of new hair coming in my scalps starts to tighten. A hair relaxer works, to straighten it but that only last for three weeks then the new growth comes in curly ( I can feel it coming in) painful!! Well, I quess I’ll keep coming back to this site to see if anyone has an answer. Good Luck

Hi Elizabeth and all,

I am on Lovaza now for the past 30 days, it’s a perscription omega 3 fish oil. So far nothing. But I am trying to remain positive it can take a few months to work.

I also am on Neurontin a nerve pain drug for 4 days now. Somehow and I dont know how my scalp pain has gotten worse. How is that possible? The neurontin on 300mg worked but upping to 900 I am retreating back to horrible flare ups.

I am beyond cnfused. I hope and pray some doctor is reading this forum and perhaps is trying to understand this all

Elizabeth, good luck also with your Dr’s visit! I think that all the hormones go out of whack when we have pain. It’s the chicken and the egg thing, which came first, hormonal imbalance or scalp pain the imbalance. I think the hormones got wacky and did something to the scalp, then the chronic pain tosses up the hormones even more. Clearly we are having nerve related sensations, burning, stinging, itching…. so there is some inflammatory condition occuring. These scalp nerves need to be calmed down! I think when they are constantly raw and irritated the blood flow cuts off thus the TE loss and thinning. Maybe AGA who knows?

My friend Nancy experienced scalp pain right before and during her hair loss, which was a chemotherapy side effect. I think that the follicle death hurts, and/or the loss of a hair whether hurts but we don’t feel it when it’s normal shedding. We with more rapid shedding and sensitivity emotionally about our looks/hair, are much more sensitized to it. Which creates stress and that causes more of whatever imbalance (cortisol? adrenal exhaustion?) that makes us shed in the first place.

My heart goes out to every sister here with this problem - my scalp is pink, and shines through, and I try not to obsess but here I am again!

Recommendation to Shedding Graduate, cut your hair, maybe it’s longer and weightier than you can tolerate. It will curl up better once it’s shorter too. Good luck with your pictures! Hair loss doesn’t show up as much in photos as in real life.

Elizabeth,

AGA=Androgenic alopecia.

This is so crazy. My scalp hurts so bad today and the nape is pink as can be. My eyebrows also burn like my scalp, both of them along with itchy lashes and nose hair.

I just do not understand. I mean apparently my follicles are dying, but never to leave a voided bald spot. So Alopecia Areata is not as likely unless this is diffuse AA. I do see fringe hair along the bang area that does try and grow back so I think it’s safe to say it’s not scarring alopecia

If any of us find answers please keep the others posted. We really need to help one another through this

Hey micky,I have been losing my hair for a year and im 22. If you have been losing it since you were 16 is it AGA? or u have never been diagnosed? Also, if you have been losing for over 6 years and it is still not noticeable for your boyfriend then your loss is progressing very slowly. Because it’s only been a year for me and u can tell by the temples and tin all around. For me I have been with my bf for almost 3 years so he was with me and still is when the loss started and right now cant tell but I have told him about it and cried to him about it. He is really sweet about it and I know he just wants me to be happy so he opes for effective treatment. Telling him about it has definitely made this easier for me knowing tha he supports me.

Does anyone have a time frame on this? For example, scalp pain started in May, and hairloss began in..July? My scalp pain started about two months ago…how long before you guys started seeing hairloss after you noticed the scalp pain?

never heard of this before .started for me 5 weeks ago after using a hair colour .since then become worse.Have tightness burning stinging pain all over scalp back of neck and ears.Have tried corticosteriods antihistamines antiinflammatorys .no help now on amitryptaline 20mg to reduce the “P” SUBSTANCE .SIDE effects not good.cant touch scalp nothing helps .best wishes to youall.

Vitamin D is a hormone and assists in the assimilation of very important nutrients. That and Fish oils, plus Cod liver oils are pretty important, and what we are usually always deficient in.

I’d recommend getting allergy tested by your dermatologist, patch tests, to figure out what chemicals in the products you are using you are allergic to, and causing the burning/itching/hair falling out.

Surprise Surprise Affirm products (including relaxer) have a urea product proven to thin, take out your hair!!! (if you are allergic to it)! That stuff is in everything….

Get the test before spending tons on random products.

Also remmember if you are allergic to say, grass, having chamomile or horsetail in your shampoo is not a good idea.
OK, so think, scalp pain = allergy / sensitivity bad reaction to hair permanent.+ your daily maintenance products.

Hi everyone. I’m so glad i found this website, cause lately i feel so alone with this problem. For a little over a year my hair has been falling out. My first bout with it happened April of last year and lasted a couple months. Now since june/july my hair has been falling out like crazy in literal handfuls. Even worse than last year. Now i’d say i’ve lost about half over my hair, and am experiencing that scalp pain/tingling sensation that you get after taking your hair out of a ponytail. I’ve been given blood work tests and everything came back normal so i can not understand why it’s still coming out in handfuls. I have also been feeling really fatigued. I haven’t been doing anything differently than normal to cause this. i just want answers hope is fading

I’m so glad to have found this site with all your comments. The best I can described this pain on my head is the comment about pony tails. If feels the same way when you let down your pony tail and the rubber band was too tight. ouch! it’s so weird. why must i always have weird stuff? How do you tell a doctor, “hey my hair hurts.” Then, what the heck can he do? Thank all of you out there who post their stories. No, you’re NOT alone!! I guess the best we can do is wait it out, it comes ‘n goes over the years. I thought I had bumped my head so many times, but hadn’t. No hair loss…yet.

Still having scalp pain. Will be 4 years come March. It’s maddening, especially when nobody can tell me exactly what it is. Nothing has worked, absolutely nothing. I also have high cortisol and my body is in crisis mode, muscle wasting, complete exhaustion. Anyone else to this level of complete and utter loss? Feeling crappy physically on top of this? Please tell me I am not alone. I am out of Dr’s to see, abandoned by the medical community left to fend for myself buying useless suppliments and shampoos

Ladies with painful scalps and no medical explaination: I was was relieved to see that others have the same wacked symptoms. After many years , many doctors, I finally came across a condition called fructose malabsorption on the web. After keeping careful food diaries, I realized that my scalp hurt (hair pulling sensation) after eating sugary foods. With that as a start, I hit google. I convinced my gastro doctor to send me for a test and Voila - I tested positive. After a radical diet change, I no longer take midday naps from exhaustion, my scalp no longer hurts and my energy levels are more consistent throughout the day. Check out the condition online. It may be what you have - its not commonly understood, but it is is rising as a diagnosis.
Good luck!

just a quick add - did any of you take ro-accutane for acne? this is the only drug I have been on when I was a teenager (am now 31) and am wondering if any connection (maybe i’m grasping at straws for some type of explanation!).

hi ellie, that is really interesting (if a little bit scary) - let me know what happens on sat as I’d be really interested to know if your dr. comes up with any answers.
X

hi nicole,i just finished reading your post.i am so happy for you that your hair is regrowing,will you please let us know what you did to help yourself

Nicole,
What is your secret to finding relief of this terrible and painful scalp problem that so many of us have.
We’d love to know !

This Nicole thing is a very cheap shot at trying to sell her own gimmick. what a low trash to try to take advantage of people pain !???

as if she doesn’t know that people would be interested !

Nicole that is terrible. Come here and suggest an answer and just leave. Great for you I hope your scalp pain does not come back 10 fold.

Update to previous post. The burning, which was particulalry bad yesterday, subdued a little in a few hours after I slammed half a bottle of klaron all over my head. It’s too early to tell for sure, but ladies, I think I may be onto somethig here. Washed my hair before going to bed: that stuff dries and looks like I used too much hairspray but washes off fairly easy. Today is the second application. Will keep you posted. Maybe this info will help someone else.

Hey guys,

I also have the same problem although not as severe as some of you guys have. But when its on, even one hair move is discomfort. With me I think its associated with stress.I am 28F and student, so exams days are problems for my scalp and its been like this from last 10 years. The day it happens it will go no till i sleep at night. I am confused between so many posts…..Have you guys got to anything or its still a mystery?

I hate to be another person to say “me too!” and not have and answer but…me too! I am 26 years old and I have had a full, and I mean FULL, head of hair my whole life. A few months ago I noticed that my light brown hair was changing color and getting very light in the front. Next I noticed that my hair got very thin, very fast, in the front. I of course freaked out and went to my doctor who ran some blood work. My blood work was normal…therefore he had no answers. Next I went to a dermatologist who was the biggest jerk I have ever met! I could tell he wasn’t listening to me nor did he care. He told me that I had male pattern baldness and there was really nothing I could do. THEN he told me that he could understand what I was going through..he used to have thicker hair too. ONE he is a male and TWO he was in his 60’s!!! I hate to sound like the jerk but its a little different to be a female in your 20’s:( Soooo next I went to another dermatologist who specializes in hair loss. I am currently seeing a female doctor at the Hospital of the University of Pennsylvania. I saw this doctor a month and a half ago and she was great. She may not have the answer yet but she was honest, understanding, and interested. She took a biopsy and believes I may have andro genetic alopecia. She started me on men’s rogaine asap. I haven’t noticed a change yet but I have only been using it for about a month. I go back to see the doctor in another month. The top of my head is so sensitive and my hair has gotten so thin. My scalp is not red and there are no bumps but it is very uncomfortable. I never wear pony tails but it feels like I have had a tight pony tail in my hair.

I have had my thyroid checked and they say everything is fine…but I still wonder. I also wonder is the birth control pill is to blame. I have drastically changed my diet trying to cut out all preservatives, sugar (except natural sugars) alcohol, and increasing nuts, fruits, veggies, grains etc. Who knows if this will help.

I am trying to keep a positive attitude but it is sooo hard. I have been using an organic conditioner with biotin by JASON. I love it. It is very soothing to the scalp and its called Thin to Thick and it helps a little. I have not found a shampoo that I like yet but I will keep trying.

I hate not knowing how bad this will get and if this is forever. Its nice to know that I’m not nuts and others have this problem. I am sorry that we are going through this, and I will share any good news that I find.

Well I saw my derm,and all she said was that the top of my head felt mushy,so she gave me Clobetasol,which dose’nt work,I’ve now noticed that the pain and mushy head is now spreading to the sides of my head and at the base.The next step is to have a biopsy,makes me wonder if this will spread to other places.If there are so many of us with this problem why is there no doctor that can help us?

Dear Painfulhead, Thank you so much.I did some research and cellulitis sounds like what i have.Hair loss is also caused from scaring from this,I didnt realize how serious this can be.I’m a diabetic and diabetics are at highest risk.I have an appt. with my diabetes Dr. tomorrow and will discuss this with her,and hopefully I’ll get some answers.Again thank you, without this forum I don’t know what I would of done.