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National Migraine Centre
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On going migraine symptoms with burning skin and neck stiffness as prodrome. Is this really just migraine?

I have migraines that don’t always present with severe headache but rather a very stiff sore neck on one side, and on the opposite side burning skin on the shoulder of the side of head that migraine pain appears. I have a weak, washed out feeling and wooziness in my head, dizziness, pressured feeling in my head and sensitivity to sound. Lately it’s been relentless; weeks of ongoing symptoms. I don’t use pain meds but today took an Excedrin Migraine and it Did Nothing, maybe even made my dizziness worse. It is incredibly hard to describe how these make one feel- almost as if I’ve had a concussion! All tests including MRI have come back clear. Diagnosed with Headache Disorder (migraine) Neurologist is having me try acupuncture which isn’t (yet…?) working.

I’m really perplexed by the inability to break this cycle and frankly becoming fearful of it being something in addition to migraines, which adds to my worries. I’ve read about co-morbid conditions such as fibromyalgia and I’m scared silly that maybe I’m developing that...although I don’t hurt all over. I guess I’m hoping for reassurance from others who may have had ongoing oddball migraine symptoms. I’m hoping I’m not such an outlier after all...

I’m 56 and have tried HRT to see if it had any effect on the migraines and there seems to be little change one way or the other. Thoughts and input appreciated!

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Hello,

I have lots of migraines that only manifest in the neck. The burning sensation sounds like Allodynia which can be part and parcel of neurological disorders. I have fibromyalgia and chronic migraines and a collection of other neurological conditions commonly found together. I would guess right now your symptoms sound more like migraine, it is a highly individual thing that everyone experiences differently, anxiety is also extremely common with these types of disorders as I'm sure you probably know. Low mood has been shown to expand the pain pathways in the brain and so can be a vicious cycle making everything worse so I would take your mental health seriously and try and find activities that make you feel safer/calm/happy. I didn't find acupuncture made any difference but I did enjoy it so it had some value. Botox is what really helped me although problems with my neck are slightly complicated which Botox can't completely fix. But there a huge number of drug therapys out there that are worth trying first and if I were you I would be asking for triptans which really are a life saver for the really bad attacks.

The only real treatment for fibro is exercise which is also good for anxiety, it is hard to go to the gym with migraine but if I can stand and walk around I'll go to a class bc there is no point waiting to 'feel better' before going as that day rarely comes! Its very hard at first but gradually gets easier and i really enjoy it now. Still you dont sound like someone with fibro. Hope that helps!

Xx

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Cat00, thanks for your thoughtful input. I definitely have anxiety and sadness around this ongoing migraine storm. I do exercise every day, migraine or not, and I find it gives me a sense of control- if that makes sense. I’ve wondered about Botox due to the involvement of my neck. It feels sore and stiff on one side nearly all the time now, and the migraine symptoms are riding along with it. I’ve never tried Triptans or Botox because my pain level with migraines hasn’t been severe. Do triptans and/or Botox work on the other migraine symptoms ( cognition, fatigue, wooziness, etc) as well?

Thanks again...

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I know exactly what you mean about the exercise, it makes me feel 'safer' bizarrely!

I personally have no problems with triptans making me feel woozy the only problem with them is that they don't completely take away the pain so I'm often still unwell and tired. Also I'm only allowd 6 a month as they can cause rebound mmigraines but I have way more migraines than that unfortunately. Probably the only advantage I have about being highly strung is that my mind stays reasonably sharp too! I'm sure some people on this forum do experience unwanted side effects from triptans but I personally would go crazy without them.

I would say a word of warning about Botox in that it made my neck a lot worse for the first month. They say you should have 2 rounds before knowimg if it worked and that was certainly true for me. I was very bad for the first round and actually tried to stop them giving me another round but im so glad they convinced me to carry on bc its been amazing good for me. Ive had to stop Botox twice for pregnancies and restart botox again after stopping breast feeding. Last month I had 18 days out of 30 with migraine, this month I'm at day 21 and I've had 3 days! Still it's hard on my neck so i have to get them to spread the injections out more as that helps.

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I have found something called CryoDerm which has arnica and boswella extracts in it, and menthol which gives that cooling sensation. But anyway I get the really stiff, painful neck on one side as well and it usually seems to start to build up the week before my period and then get worse and worse until I get a horrible migraine. The triptans have helped me immensely with the migraine days as well as ondansetron which helps with the queasiness and icky stomach feeling. Plus I have to take an advil. But the CryoDerm helps with the neck pain a lot leading up to that. Otherwise I feel like I want to take advil all throughout that last week of the cycle and I know that taking it all the time isn't good for the liver and all that. My chiropractor is the one who shared CryoDerm with me. I found a great chiro but I haven't gone to him when the pain is severe and I'm actually afraid that getting adjust during that time will hurt and trigger a migraine, although this particular chiro has said that he wouldn't do anything major when I'm already in pain. I read reviews from migraineurs online that said he was the best, so I tried him out and he's really sensitive and understanding. He also puts the electrodes on my back which helps release some tension. Anyway, hope any of this helps!

Here's a link to CryoDerm amazon.com/CryoDerm-Analges...

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Totmom, I’ll check the CryoDerm out. Thanks so much!

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Another thing I just discovered and so far it has really helped and that is magnesium. I know that isn't new information, but I have been having horrible neck and shoulder pain this month and I read something saying that some people with migraines which also include tightness of muscles could be very magnesium deficient. So I took quite a bit of magnesium over the course of the day yesterday. The trick is to take it until you have a bowel movement because that's when you know you took enough. I took about 2,700 mg yesterday and still haven't had a bowel movement! I'm not going to take anymore though until I know for sure because I don't want to have severe diarrhea. Anyway, I slept great for the first time in a while because my muscle pain has greatly diminished! My neck feels looser and I can actually turn my head without feeling like frankenstein! I got up to make my morning coffee and didn't feel like a stiff zombie just trying to get things done around the kitchen! I have two young sons and it's usually so hard to help them especially in the morning because my neck and sometimes shoulder will be so stiff. And then the pain inevitably gets so bad that I get a migraine that is a 10/10. But I haven't been doing this long enough to see if it will actually prevent a migraine, so we'll see! At least it's a natural remedy that doesn't require a prescription! Just be careful and take small doses throughout the day if you do it, because you can take too much!

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Yep, I take magnesium too. About 800 mg per day. I didn’t realize we could/should use more than that! I’m glad you’re noticing relief.😊

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Thank you, and just to share this interesting option for magnesium supplementation as not all forms of mag are equally well absorbed:

gwens-nest.com/magnesium-su...

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I mix magnesium citrate powder by Calms with plain sparkling water…

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All the symotoms you decree here, including beck pain and stiffness are part of MIGRAINE. So, don't worry or fear that it points to another condition. Migraine doesn't show up in blood tests or by having an MRI. Access to a FMRI is necessary fur that and it to show up and that's only sadly available to patients in university research departments that are linked to specific hospitals.

As far as I'm concerned and that of my neurologist, Fibtomyalgia is Migraine. There is only one condition but rheumatologist a and headache specialist don't work together and so somehow there is another name, for what is: Migraine.

It's great fibromyalgia is getting more press at the moment but it's migraine that needs more press and more research.

I've been suffering a winding range of odd and disabling symptoms my whole life and sometimes individual attacks bring new or specific symptoms with it. So such a wide range of symptoms points very much to migraine as opposed to any other medical conditions.

The brain is a complex beast and symptoms to do with balance, memory, pain, sleep, mood when taken as a whole point to Migraine.

I've tried acupuncture, meds, electrical treatments but nothing's worked or made improvement in my condition. My Dr made me a referral for Botox in the new year and that's the next step when meds aren't bringing relief.

I wish you well in your plight for improvement in your condition.

Don't give up and keep talking and trying things with your neurologist.

Be patient and be prepared that any progress made may be small and slow.

There is no cure for migraine, it's a neurological disease/ disorder.

But there are ways you can help yourself while you are struggling.

Meditation and gentle exercise over time can work wonders. Avoid drinking caffeine and alcohol. And keep stress to a minimum.

Good luck

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AmySholay, thanks for your reply. Makes me wonder about an ongoing stomach ache and cold shivers I’ll have for days on end even when the “migraine “ symptoms are at bay- perhaps even that mystery is another form of migraine? I’ve had an odd stomach- intestinal ache off and on for literally years and nothing sinister shows on exams; irritable bowel is the common diagnosis. I’ve been worrying myself silly trying to find the common thread with all these weird and often unending symptoms...

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Just throwing this out in case it helps. Have you tried ice on the sore area of your neck? Icing my neck is painful (ice cream headache effect), but if I keep at it (hold it on as long as I can stand it, remove, do it again) it gets less painful (as vessels shrink) and the migraine pain goes away, sometimes temporarily and sometimes permanently. Try different areas. I've iced base of skull, side of neck down onto shoulder, front of neck under my chin, forehead, temples, even my cheeks by my ears. Wherever it causes the most pain! It's not fun. Lol. But it has saved me countless times.

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headachequeen, I haven’t tried the ice- perhaps I shall. Usually I crave warmth rather than cold during a spell but I’m open to suggestions. Thank you for your input!

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Good luck! Use a snuggly blanket!

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Sometimes I use the heat patches to get rid of the tension on the neck that will inevitability lead to a migraine.

Sometimes I do the opposite and use the freezing spray that athletes use for injuries. They both work for some weird reason, I try one ( cold) if no relief in 30 mins I'll switch to the heat patch.

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Dear 1Roseburg1, I'm not sure why I didn't think to tell you about this before, but I also have been prescribed something called Ondansetron aka Zofran, which is an anti-nausea medication. They usually give it to people who are having chemo, to help with the nausea obviously, but it has actually been really helpful for the gut issues I also experience along with my migraines. If I wake up with that "icky guy" feeling that usually accompanies the neck pain, I take a half of one and it totally calms it down. It isn't just for nausea. I use it of course if the migraine reaches a point where I'm feeling nauseous, but I have found that over the last couple of months that I have had the ondansetron I have slowly had less and less of the that terrible feeling in my intestines.

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Yes, anti sickness tablets are a most have in the bag for anyone that suffers from migraines. Not only they stop the sickness but if taken 15 mins before the painkillers, they increase the absorption of the painkillers in the body, therefore making it work better.

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I’ll ask my doc about this! Thank you!

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