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28 Comments

  1. Jeanne
    19 September 2009 @ 2:49 pm

    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

    Reply

    • Trixi
      31 December 2012 @ 4:27 am

      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

      Reply

      • Linda B Boudreaux
        14 December 2020 @ 6:01 pm

        I have the same thing. Hair hurts so bad and severe migraine headaches. My Dr is going to try nerve block on back of my head. Praying it works. I also have had hair loss. All my problems started from a chemical poisoning from a nail salon, I worked in a building and she had no ventilation with drop ceiling. Put me hospital for seven days could not take sun glasses off. Could not stand anybody’s presence around me either. From this it damaged my nervous system. Gave my small river neuropathy and fibromyalgia. Hair feel out alot. Still suffering.

        Reply

  2. Gwen
    20 September 2009 @ 12:36 pm

    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

    Reply

    • 17
      28 July 2010 @ 5:37 pm

      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!

      Reply

      • flossyflanders
        6 January 2017 @ 7:43 pm

        The body is all connected. They haven’t even scratched the surface yet with what we will discover about the body and brain. I have met a lot of very stupid drs who have been taught by very stupid drs its not their fault. A senior physio has just sent me for an xray because she is certain i have scheurmanns disease of the spine because i have a bad back and migraines. No one ever joined the dots before or listened to me. I have seen and had the following….3 physo.s, 2 chiropractors, amatsu therapist, pain clinic, spinal assessment clinic, 2 xrays, ct scan, scans, mri scan. Nerve blocks is plan of action but probably won’t get them when i need them unless i get private medical insurance

        Reply

    • Opel
      17 December 2017 @ 9:40 am

      Gwen,
      I am sorry to hear all of your pain and suffering and someone that has never experienced this type of pain can never understand, and I am sorry that the medical professionals (and I use that term lightly in their case) treated you in away of dismissal. How terrible! I also suffer from migraines (since the age of 7) with hurting hair ( I thought I was imagining it, and my husband thought I was crazy). I also have fibromyalgia w/ chronic fatigue syndrome. My rheumatologist has helped alot. It has been very hard for me to slow down and sometimes just stop everything I have been so used to getting done, and I have spent many nights crying from pain. But it is getting easier and yes, I still overdo it when I have a good day, but I always make it and give it another try. So good luck on your journey.

      Reply

  3. James
    21 September 2009 @ 12:35 pm

    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!

    Reply

  4. Amy
    2 October 2009 @ 8:07 am

    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.

    Reply

  5. deb
    2 October 2009 @ 11:33 am

    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.

    Reply

  6. James
    5 October 2009 @ 5:09 pm

    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!

    Reply

  7. Nickie A
    3 May 2010 @ 3:40 pm

    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!:)

    Reply

  8. jackie
    10 August 2010 @ 8:45 pm

    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.

    Reply

    • macthewife
      19 January 2011 @ 8:19 am

      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?!

      Reply

  9. Nickie A
    4 September 2010 @ 9:33 pm

    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.

    Reply

  10. Natalie
    7 April 2011 @ 6:15 am

    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! 🙂

    Reply

  11. "My hair hurts" - Allodynia...anyone else have it? - CurlTalk
    4 May 2012 @ 9:26 am

    […] 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 […]

    Reply

  12. M.
    13 September 2012 @ 6:57 pm

    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.

    Reply

  13. Jeff
    31 December 2012 @ 1:25 pm

    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!

    Reply

  14. Leigh Ann
    15 April 2013 @ 4:03 pm

    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.

    Reply

    • James
      15 April 2013 @ 8:28 pm

      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!

      Reply

  15. Tammy
    17 August 2016 @ 8:59 am

    My hair hurts so back at least 70% of the time in spots I’ve asked my doctor if I cut it would it help ? Thinking if it’s not so heavy it might not hurt or weigh it down so much. He just laughed an thought I was joking !! I’ve had this migraine since Thursday, it’s now Wednesday! My hair is killing me as well as my head ! I take topamax an tramadol an sumatriptan. But at this point nothing is touching it an God forbid ask for anything else to help with the pain ! My having cervical fusions doesn’t help either with the headaches , they go up the back of my neck to either side of the back of my head . But guess what I’m expected to function an get everything done ! My family has to fill in my words half the time because I know what I want to say but can’t get it out it know what it is but can’t remember the right word to use. With new people I just want to cry !! I’m thankful to just wake up each day I know there are others that would love to just be in my place , so I take it a day at a time 🙂 I don’t work a job I do watch my grandchildren and all the other chores that everyone magically thinks do themselves.

    Reply

    • James
      17 August 2016 @ 10:58 am

      Tammy, your doctor shouldn’t laugh – you wouldn’t be the first person to cut your hair to help alleviate migraine symptoms. Some people do find that the weight of their hair seems to trigger attacks.

      Reply

  16. Mike Miller
    21 November 2016 @ 5:34 pm

    Sometimes that pain starts hurting me when i comb or touch with my hands it really, really hurts. Many people laugh at me if i tell em about the pain. What should i do?

    Reply

  17. Hanna
    2 January 2017 @ 11:52 pm

    Hi there,
    I’m really grateful I stumbled across this page. WebMD is scary and very isolating. I can empathize with everyone commenting here. The crown of my head/hair is irritating to deal with.
    I was wondering if anyone has any non-drug solutions to this pain. I have been suffering for migraines for 20 years and really am sick of taking pills. Has anyone found relief from topical treatments like a shampoo, or like a ben gay creme? How about massage? Would that combat the skeletal pain aspect?

    Reply

  18. flossyflanders
    6 January 2017 @ 7:48 pm

    It does sound bizarre but absolutely fascinating. I wonder if u cut all your hair off it would hurt to get it cut?

    Reply

  19. Nimz
    15 April 2017 @ 10:16 am

    Two spots on the scalp at the back of my head hurts and immediately I know I’m getting a migraine episode in few hours (latest). I always try to massage that spot but it doesn’t work, my first migraine experience was in grade 10 and everyone thought I was exxagerating my symptoms. Nowadays i just swallow two ibuprofen (400mg each) and cry myself to sleep. If I’m lucky I wake up with no migraine , sometimes it goes on for days and I’m just in bed suffering because the lowest noise bothers me , even my phone ringtone annoys the hell out of me. As I’m typing I’m just recovering from one😟😟.

    Reply

  20. Justjess
    11 December 2017 @ 11:22 am

    I’m so glad to read this post! I’m into day 6 of a migraine cluster and have been getting symptoms I don’t usually. I’ve had some intermittent breaks over the last 6 days, but only for a few hours at a time. It’s so disheartening to feel it coming back when I thought I had finally found something to break the cycle. Today’s symptom: allodynia. I woke up with about 25% of a migraine and tried to hit it early with ibuprofen. Helped some, but little. Just a little while ago, I had an itch on my head. I scratched it and all kinds of throbbing pain began! Huh? that’s not happened before. Talked to a fellow migraine sufferer and she’s had it as well. Just one more thing I have to beware of during a migraine attack. Yay….

    Reply

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