Comments on: My Hair Hurts! Migraine and Allodynia

By: James

James — Mon, 05 Oct 2009 23:09:10 +0000

I’m glad you’ve found this helpful! Yes, this is another of those symptoms that you get and you wonder what in the world is going on. Thanks for sharing your experiences!

By: deb

deb — Fri, 02 Oct 2009 17:33:10 +0000

I’m so glad I stumbled on this today. I too recently starting experiencing what I think I can now call Allodynia. I get to where my hair hurts so much i can barely stand to touch it even to wash it usually on top slightly off center near the roots. A patch of skin on one arm was bothering me for a couple of days ago recently but there was nothing there. It even hurt to touch.
Had my first migraine about 6 or 7 years old then nothing until a major stressor in my life in 1998. I would get them multiple times a week but now they are just monthly although now that feels like too many. I’m 39. Thank you so much for the information.

By: Amy

Amy — Fri, 02 Oct 2009 14:07:32 +0000

Hi, I’ve suffered from migraines since I was 5, I’m now 43. I’ve just recently started experiencing what I think to be allodynia. It’s happened a couple of times in the past but this week on Tues. my “hair” hurt so bad I could not touch it & then last night -Thurs I got a migraine, at least I now know what it is & to expect a migraine soon after, thankfully I always have my relpax on hand. Thank you for the info.

By: James

James — Mon, 21 Sep 2009 18:35:11 +0000

Thanks, Jeanne, for sharing your experiences. It’s good to hear from someone who deals with this problem outside of migraine, because it is a serious issue all its own. Thanks for taking the time to stop by!

And Gwen, thanks for sharing your experiences as well. The short answer is that we do know there is a relationship between migraine and fibromyalgia. However, we haven’t nailed down what the connection is (although there certainly are theories). Fibromyalgia is one of many issues that seems to come along with migraine, and we’re trying to understand why that is. To set your mind at ease – many people have both migraine and fibromyalgia. It is not unusual, though I wish I could say it was!

By: Gwen

Gwen — Sun, 20 Sep 2009 18:36:42 +0000

Hi. I have had migraines for over 12 years and have always had the allodynia associated with them. When I was in the military I took a sulfa drug and had an allergic reaction akin to a spinal menegitis like illness. The drs did spinal taps on me, 2. I got a spinal headache and they did a blood patch to “fix” the headache. Three months later I took the sulfa drug again and had the same reaction, the spinal menegitis like illness. I had 2 more spinal taps, the spinal headache and the blood patch. I then started having the migraines. I had never had migraines up until that time. Over the course of 12 years the migraines have gotten steadly worse to where I have chronic daily intractable migraines. I take Topomax, 200mg 2x daily, propanalol 160 mg daily, and imitrex 20 mg nasal sprays 2x day as needed. In the past 6 months I have developed fibromyalgia which is the allodynia on a permenant basis. What I am wondering is wether or not the spinal taps could have lead to the migraines. Also wether or not the migraines could have led to the nerves being led to hypersensitivity. The neurologists I have talked to , one has laughed me out the door, the other has dismissed me outright. The primary care dr says that noone has studied the link between migraines and fibromyalgia before. Does anyone else have these problems? Luckly my neuro has tried the Botox treatment out on me, it has actually worked wonders on me and has let me be able to get out during the day and do things I have not been able to do in years. I had my first one 2 months ago, due for the next round on Nov 12. I think that the Botox has already started to wear off. Thank you for reading this, i am walking through a maze that noone wishes to walk with me.

Gwen

By: Jeanne

Jeanne — Sat, 19 Sep 2009 20:49:14 +0000

James,

I found your post through a retweet on twitter by Jasmine (@jasminepw), a buddy of mine.

While I do not have migraines, I do have numerous chronic illnesses and I am very familiar with allodynia. In my case, allodynia affects my entire body. Certain areas are affected more than others. (For example, after two nerve blocks were performed I finally had surgery to cut a nerve. Let’s just say the surgery did not go as planned).

A year and a half after the surgery, it hurts to have clothes touch my leg. Wind blowing on it can cause unbelievable pain. I can’t set objects on my lap. If my daughter gives me a hug and forgets about “Mommy’s bad leg” when she positions herself for that hug, I’m in trouble.

In any event, between the botched surgery, the phantom pain that followed it (with possible RSD), my neuropathy, and my fibromyalgia… I have a lot of issues that I think feed off each other.

The bottom line is that my central nervous system is not functioning properly.

I have had pain that literally causes the hair to hurt. It can be impossible to even run a comb through my hair at these times.

I have also had other incidents where my scalp hurt so badly that it felt badly sunburned and I could not even tolerate shampoo (very gentle shampoo). This may have been a separate issue. (Doctors have been testing me for years for lupus and I hope that the scalp problem was not a sign. I have had significant hair loss as well).

So I have a lot of different issues going on (not necessarily all related).

There are times when my dear husband gives me a gentle hug and I wince in pain. My allodynia degree of pain varies.

I think it’s great that you’re creating awareness about allodynia.

While I do not personally experience migraines, I have many friends who do and I have great empathy for them. Having my share of illnesses that cause chronic pain, I really feel for anyone who has to deal with such debiltating pain.

Jeanne