18 responses

  1. Jeanne
    19 September 2009

    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

    • Trixi
      31 December 2012

      WOw, Jeanne – you are going thru alot. I too am a chronic illness sufferer….. I don’t have the allodynia all over my body but I have it on my head both from migraine and from a surgeon cutting the nerve – like you crazy phantom pain. How is your’s now? Would love to see if you ever got diagnosed. I’m sorry you are hurting so…. I know this reply is 3 years late…hope you get it somehow… take care

  2. Gwen
    20 September 2009

    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

    • 17
      28 July 2010

      Hi,

      When i was 15 i had Meningitis and since then i have had cronic migranes and i think everything believes i am crazy, Everything i do gives me a headache, i have seen a neurologist and she gave me topomax as well and thought the doctors were crazy for diagnosing me with meningitis! ha, Can you believe it?! I am now 17 and cant really live my teenage life because of my migraines, its terrible, Im going through the same thing! my aunty tried Botox for her migraines and hers it wearing off so i dont want to bother with it either now, i wish someone didnt think i was crazy either!

  3. James
    21 September 2009

    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!

  4. Amy
    2 October 2009

    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.

  5. deb
    2 October 2009

    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.

  6. James
    5 October 2009

    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!

  7. Nickie A
    3 May 2010

    Thanks for posting this article, just for the simple fact that it confirms I’m not nuts. :) I suffer terrible allodynia with my migraines. My husband doesn’t understand it at all. He will try to cuddle or give me a hug when I’m feeling ill and I literally crawl up in to a ball and move away. His feelings get hurt sometimes because he is just trying to help.

    I used to use DHE (in injections) and now sometimes use Toradol as an injection and it can be really difficult to administer. If I catch a migraine soon enough I’m okay, but full blown I can’t stick the needle into my leg. Thankfully my husband will do it for me and sees the pain just from the needle. I think this helps him understand how much it hurts.

    My escape is very loose pyjamas and nothing on my head (like hair clips, ponytails). I sometimes find a warm bath comforting. The water can be soothing.

    Thanks again!:)

  8. jackie
    10 August 2010

    thanks for the article I thought I was nuts— whos scalp hurts? I cant comb my hair or wash it without pain but I dont have any headaches.

    • macthewife
      19 January 2011

      My scalp doesn’t hurt but my hair does. This happens sporadically and I’m sure people think I’m nuts to – especially hairdressers! I have had brain surgery, chemo injected in a brain tumour and 165 blasts of radiotherapy and never had this problem prior to my treatment. Strange thing is I rarely have headaches and have never had a migraine. Any suggestions for sore hair please?!

  9. Nickie A
    4 September 2010

    Message to 17 about Botox – It does wear off after 2 to 3 months. My neurologist administers it. It doesn’t work for me, but for those it does work for, they get a set of injections every few months.

  10. Natalie
    7 April 2011

    Hi,

    I’ve sort of been diagnosed with allodynia today. I say sort of because my doctor thinks that’s what it is, but he needs to research it more to figure out what to do for a better diagnosis and treatment.

    My allodynia is intermittent, and is only associated with migraines every once and a while. But sometimes the skin on my arms, legs, bum, feet or hands will just start to hurt. The first time I ever got allodynia, it only lasted for an hour or two and was only the size of a dime and I’d only ever get it every couple of months. Now, two years later, my whole leg, or arm, or whatever, will hurt for two or three days and I’ve been getting it once or twice a month. It’s definitely getting worse. But only recently, after telling a couple people about this “skin pain” I get, did I realize that it wasn’t actually normal and made a doctors appointment.

    The pain I get is different than what I’m reading about though because mine is sporadic, brought on by touch and cold, not isolated to one part of my body, and is not associated with migraines. This makes it a lot harder to diagnose than those of you who get it often.

    I just don’t know what to do in the meantime to soothe the pain. Are there any over the counter creams that work for anyone? I’ve heard linocaine, but because it has a “cooling” action, I’m thinking this will make my skin hurt more. There doesn’t seem to be much literature on allodynia, so I’m wondering if anyone has some advice or information?

    Thanks! :)

  11. M.
    13 September 2012

    My hair hurts. I never told anybody, because I thought nobody would believe me.

    I had toothache top left, but didn’t know which tooth it was. The dentist couldn’t find the problem, even with x rays.
    Then my ear started popping on that side.
    Then I had a headache that side.
    Now my hair hurts that side.

  12. Jeff
    31 December 2012

    WOW! have been having this for about 20+ years on my scalp and arm. also get migraine with aura for years (aura no headache). didnt know they were connected.
    this really helps. had an episode of Allodynia two days ago and had Aura miagrain last night.
    giving it a name and knowing I am not alone with this really helps!

  13. Leigh Ann
    15 April 2013

    Thank you for posting this article. I wasn’t sure if my sensitive scalp was something I should be worried about or not, what if it was a side affect from my medication?

    My sensitivity seems to linger after I take my medication and my headache starts to go away. It’s still there while I’m in the “migraine hangover” stage. Does this often happen to anyone?

    The best way to describe the feeling is like a sunburn on the top of my head, but now I have a name associated with the feeling. Thank you, this is a wonderful resource.

    • James
      15 April 2013

      Hi Leigh Ann,

      Thanks so much for your kind words! Yes, some people do experience allodynia at other times, even after the headache is gone. You’re not the only one.

      As to whether it’s something to worry about – it’s only as serious as migraine in general (!) – and of course, allodynia itself can be pretty difficult to live with!

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