The reason I am asking this is that my specialist has diagnosed me with scalp allodynia but I am still not convinced this is it. I read that allodynia is a sensitivity of the skin when touched. In my case, it is a stinging/burning/itching pain all the time, no touching involved. It actually feels better when I touch, a bit like when you scratch a mozzie bite. It hurts more after. It can hurt so much that I end up digging my nails into the painful spots and for some reasons, it does stop the headache. My migraines have been a bit more quiet in the past few weeks but the 'allodynia' is spreading more and more (from the right side of my forehead all the way down to my right arm sometimes).
Any feedback much welcome!! Thank you and Happy New Year to all!
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Chleo11
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I'd never heard of allodynia, scalp or otherwise, so I looked it up, and you're right, its supposed to be a pain response to something that is not normally painful, like a light touch. I checked it out because what you describe happens to me at times, only its not always just my scalp - it does affect the scalp, which gets painful one side, but occurs mostly on the left side of my face and neck sometimes making my eye feel painful even though there's nothing wrong with it, as well as my ear getting quite painful with pulsatile tinnitus too - mostly it consists more of numbness and tingling which sometimes proceeds to pain - also itching, specially as it starts to clear. It also affects my left shoulder and down my arm when its really bad, as well as onto the top of my chest that side. I've even noticed it in my foot that side too on occasion when its bad... Occasionally it affects my mouth just on that side too, making clear speech a little difficult, but fortunately it passes. I did once have a hemiplegic attack on the left side which was initially diagnosed as a stroke, subsequently said to be either hemiplegic migraine or a sudden, severe compression in the neck, so I'm never sure whether what I get is related to migraine or not. No one ever mentioned allodynia, though terms like TMJ, menopausal migraine (at the age of 32!), idiopathic facial pain, and neuralgia/neuritis were all 'diagnosed' by different specialists. Most recently I was told by a hearing specialist that the eustachian tube that side was 'floppy' which was probably contributing to the pulsatile tinnitus. That didn't make sense to me either - the pulsatile tinnitus comes and goes, and if it was a floppy eustachian tube, I'd expect it to be there all the time. I concluded no one really knew what was going on....
I'm fairly convinced its all to do with my neck, which does have significant problems with the discs as well as a compression on the left side at C5/C6 - quite why it comes and goes I'm not sure, although I have noticed a connection with certain head movements. Whatever causes it, I know its a nerve problem - whether its neurological or physical, well, jury's out on that one. I just take evasive action by slathering on 10% ibuprofen gel wherever I feel it (avoiding the actual eye) including up into my hair just above my neck, and wearing a soft neck collar to restrict head movement and give my neck a rest, and taking co codomol as well as a 2mg diazepam at night for a couple of nights. Seems to help and it clears - till the next time. It's all a bit tedious, but, well, I'd rather not take gabapentin and the like...
Not sure how much help any of this will be to you though, but it might be worth seeing a cranial osteopath for a treatment- that's how I managed such symptoms for some years, only now my bones in the neck have got too fragile for that (I'm old!)
One thing I did learn - when it first started and I used to worry about it all the time and look for a diagnosis, I suffered more with it. Once I learned (after scans and so on) it was nothing life threatening, it took me a while to adjust to the idea that this problem wasn't going away, and certainly not with conventional treatment methods if any were offered, I sought other, alternative help to manage it - cranial osteopathy, acupuncture, Bowen therapy and so on. It got easier, but I suspect I learned to live with it better and not fret about it so much. Good luck
Hello Miriam. What you describe has some similarities with how it feels to me. I can compare the feeling to 'sciatica nerve pain' in my scalp. I know it doesn't make any sense but it feels like this and I can have this strange 'sciatica' pain down to my calf sometimes, all on the same side as the head pain. Makes me feel of 'chinese burns' kids do to each others. I'm scheduled to see a neurologist in London soon, specialised in head and face pain. They want me to have a brain MRI as well. I know I shouldn't hold my hopes too high but it will be nice to see a specialist who won't be coming from the migraine point of view and blaming everything on the migraines. Wish you all the best!
Make sure you mention the leg symptom to him as well as all the rest - its important and might indicate a neck issue. Hopefully any scans he orders won't show anything too dreadful. Happy New Year
I have the same neck problems all the same symptoms, with everything and scalp aura migraine all started same time im 63 so as you can’t do any physio as to fragile, have learned to except it , best wishes
I can do physio - but not osteopathic neck treatments, where they rapidly twist your neck to one side, then the other, usually with a loud crack. I do neck exercises daily...
Thanks for advice, they told me not to as there is sliding disk and arthritis all along before they diagnosed it they were giving me physio in neck and unfortunately made the problem a lot worse, so now steer clear, like you wear soft neck brace when flares up especially for bending lifting doing household chores 😊 sleep with very flat soft pillow seems to help but soon as over do things flares up my own fault get to complacent, it is what it is , try to appreciate the times when not flared up as you say, also not 100% sure weather it sparks aura migraine but Neuroligist thinks probably is , all the best
I hate having physio on my neck, so now won't let them - I try to manage it myself, as described. Bloomin' nightmare, necks, especially as you get older.... take care
It sounds awful for you. I get very tender spots on my scalp especially around migraine days. It's tender to touch like touching a bruise but nothing like you describe. My mother who has migraines has this too and no one else in the family have migraines or this type of tenderness. Doctors have said I have allodynia, I have other chronic pain conditions as well as chronic migraines and we have always assumed it was a neurological condition caused by prolonged pain exposure. I do know that you can get huge scale differences in allodynia, for some like me, its just a way of understanding the extra painful sensations I have but for others it's all encompassing. I know some people get huge bruises on their skin after only a light touch and they become super sensitive to everything. I just can't brush my hair when its bad! I hope in time things will become more clear for you.
Hello Cat00. The thing that I can't understand is why is it, when I have a relatively calm period and I don't get many migraines at all, the 'allodynia' stays the same, if not worse. I believe that doctors are too quick in dismissing what we say and that when you have chronic migraines, doctors just need to know your age and your gender, and they have already made up your mind on what is wrong with you. Thank you for your response and take care!
Oh I think that is very true. A diagnosis of migraine seems to be a doctors pass card for not being curious of any other pain we have. To be honest I have a diagnosis of fibro myalgia too which I think has the same effect. I might as well have the words "hysterical woman" on my medical notes instead of the 15 files of crap I actually have. As far as they are concerned I'm not dying so there's nothing they can do and they are not interested anyway.
The trouble with Allodynia is because they think it's a condition where your bodies normal reactions have gone awry this pretty much encompasses everything. It's a bit like chaos theory, like where they try to predict the weather based on various things like pressure, humidity, topography etc with so many variables and so much data they simply can't process it all in a useful way and tell us what's going to happen. Our bodies are the same I think, too many variables and too much data and when the pain system goes awry you get all this useless and false signalling to our brains that make our lives a misery and don't tell us anything useful, and don't doctors anything useful for that matter. We just end up being the mouthpiece to all this pain data that no one wants to listen too. We need to dampen everything down somehow. I hope your appointment will help, fingers crossed!
I have s sore scalp now. It’s just sore not itchy or anything else. It’s like having loads of tiny knots all over my scalp. When I touch my scalp it’s tender but I’m migraine free at the moment. My scalp is tender much of the time. I’m not sure why , it’s a mystery but I believe it’s part of the migraine process
Hi Kathy. Yes, it feels a bit like that to me. I suppose that if it lasts, I will have to be a bit more assertive with the doctor and ask for help on this. Wish you all the best.
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