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WavyMermaidy 05-02-2012 08:52 PM

"My hair hurts" - Allodynia...anyone else have it?
Hey all
I have been scouring the boards and trusty ol' Google for quite a while on this issue. Here is my story (in brief - I hope):

I have chronic headaches, including migraines, which I have been dealing with for about 10 years now. Over the last few years I have noticed that my scalp/hair has become a major trigger for my headaches. This goes beyond just not being able to tolerate ponytails and headbands...more along the lines of absolutely anything, even one small clip holding a small piece of hair up, causing pain. If one strand gets pulled even so very slightly it will trigger headache (which is magnified if I even try to braid it, say at night, and one or more strands get pulled...feels like someone is dragging me by my hair). I've tried every which way to braid it just to get it out of the way...loose, french, side, loose buns...some days I can tolerate something for a while (hour at most) but it's so rare.
I used to finger twirl my hair when wet but stopped that in attempt to reduce pain. Now I plop after a shower, which seems to be ok, but I wonder if it's not ultimately resulting in pain as well. I used to love to get my husband's head/hair massages, but now the shifting of the hair (even just light finger brushing) usually leads to a massive headache. I also have sensitivity with weight on the ears and face (i.e. sunglasses, etc.).

I have read a lot of posts, here and elsewhere, about people who are "tender headed" or what not, but it never quite seemed to the level of sensitivity I have. Today I discovered the term allodynia, which is a symptom of migraine and also fibromyalgia (which d/t various issues I have other than the scalp thing is something I have suspected I may have but am not diagnosed). It basically means something that usually does not cause pain ends up causing pain (i.e. brushing hair, etc). Some people have it just during migraines and others seem to have it all the time, like me. So, at least I have found a name for it.

I guess my question/reason for posting here is that I am curious as to whether anyone else has this severe sensitivity and what, if anything, has helped anyone.
I have tried to figure out if the length/weight of my hair exacerbates the problem. I have read on message boards and such where people have cut their hair d/t sensitivity and that some people are helped and some aren't (and ended up regretting cutting it since they had no change in sensitivity). I really don't want to cut it if I can avoid it...and from what I am reading the jury is out as to whether or not cutting the hair does much to alleviate pain.

So, that's the story. Any fellow sufferers?

Va Va Get My Broom 05-04-2012 10:26 AM

I don't have it but I hate seeing people in pain. Here are some links:

Hair hurts (allodynia on scalp) Report for Patients Like You : PatientsLikeMe

My Hair Hurts! Migraine and Allodynia

Finally, I am vindicated! Don't touch me, I hurt! Allodynia...

Painful to Touch: Fibromyalgia & Tactile Allodynia

Hope that helps.

crimsonshedemon 05-06-2012 03:44 AM

I have systemic lupus and fibromyalgia. My scalp doesn't hurt all the time but when I flare, my scalp will swell and be incredibly painful. At times, I can't even put up my hair, pin it back, etc. Thankfully it doesn't last.
This over sensitivity can be a symptom of neuropathy.

If you have symptoms of fibro, I *highly* recommend the SHINE protocol. CFS & Fibromyalgia Solutions for Patients and Their Doctors I've added several of his supplement suggestions and they've made a big improvement. I've had better results from adding some supplements than most prescription medications.

Do you take any medications? Every medication (otc or prescription) robs your body of minerals/vitamins. If these aren't replaced, you develop more issues. B1, B6 and B12 deficiencies are common in neuropathy. Alcohol, processed foods, white sugar, etc can all cause B vitamin deficiencies too.

WavyMermaidy 05-07-2012 01:56 PM

Thank you both for your replies.

VaVa - Those are some great sites about allodynia...none of which I had come across yet, so I appreciate your finding them!

Crimson - Thanks for the recommendation of that website; I will be sure to check it out more thoroughly. As for taking medication, I don't actually take anything other than occasional Excedrin for headaches and very occasional allergy nose spray (and allergy shots). I have just recently moved out of state during which I sortof got off my regimen of taking multivitamins, so I think after reading your response and talking to some other folks that getting back on my multis and looking at some of the supplements that site recommends (as well as looking into some specific B complex ones as well) will be a good start.

Again, thank you both for your assistance :)

lucyprimrose 05-07-2012 06:04 PM

Sorry to hear about this. I know that some doctors are prescribing Pregabalin or Gabapentin for neuropathic pain. They used to be more common as prescriptions for epilepsy, but now they are quite often used for nerve pain due to diabetic issues or fibromyalgia. You don't need a specific diagnosis of any of those things to get it if your doctor thinks it could help general pain. However, they aren't to be taken lightly so you'll probably decide against them (they can have side effects, eg reduce metabolism) but I know someone who has found them very helpful for migraines so might be worth knowing about if you get desperate.

It may not prove particulary relevant because it sounds like you're more sensitive to pressure in general, but it might be worth trying any herbal rinses or products designed to reduce inflammation on the scalp - if there is a scalp/skin issue playing a part then maybe a trichologist or dermatologist would be worth seeing.

WavyMermaidy 05-07-2012 07:43 PM

Thanks for the suggestions, lucyprimrose. I might look into trying something for scalp sensitivity (since, no pun intended, that certainly couldn't hurt to try).
I am always hesitant to take medications but as merciless as this has become (with headaches and such a daily occurrence at this point) I will probably have to try something before too long. My husband has some experience taking Gabapentin for pain and it worked well for him. I plan to go get a physical and talk to a doctor very soon for all of this.

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