I’m new on here, but have been reading the forums for a few weeks since I stumbled across you in my search for answers. Love the 10 commandments, thanks for that gold information.
So I have been suffering since January this year, since then I’ve gone from active gym goer, social butterfly, mother of one, working 2 jobs, to hardly managing a walk a day, although I try,working only 6 hours a week, laying on the couch or in bed and becoming quite reclusive. I have had MRI and blood tests and all are ok. Was diagnoised with VM by ENT but am having a second opinion consult with another this week. I’m on sandomigran 0.5mg 5 times a day and going up to 6 this week, vertigo has sort of gone but otherwise I’m not sure they are working. Am so exhausted most of the time.
Anyway, I digress, my question is, I get this terrible neck and shoulder/back pain most days. Pain meds dont seem to stop it either. Only thing is rest. Is this from the VM? Has anyone had any luck with physiotherapy? I’ve just come off the chiropractic merry go round.
I’m about to start a diet change as dr had thought mine were stress/hormonal so I’ve been still having coffee and alcohol but I’m starting the elimination diet today!! I’m devastated as I’m a coffee, wine drinking foodie but I can’t go on like this.
Thanks for listening, this illness has us suffering in silence so often, I’m so pleased to have found these forums.
This condition can really stop you in your tracks & put your life on hold! A really tough one to battle through. So good luck on your journey & know you’re in the right place to get help on this forum. Now you have a diagnosis & starting the migraine diet (definitely no caffeine or alcohol - not good but really helps), & find a med that will get the migraine under control you’ll be on your way to getting your life back. Pain killers/abortives aren’t recommended for chronic migraine.
The neck/shoulder & back pain is typical migraine side-effect stuff & preventative meds could help reduce that tension.
Look at the latest info from Dr Nick Silver - posted under General Discussion gives a list of all the side-effects of chronic migraine. The link below gives a list of Migraine Preventatives used - Hope this helps
mvertigo.org/articles/vertig … ne2011.pdf
Thanks for steering me in the right direction Barb, so much great information on here.
Noticed you are in Australia too, I’m in South West Victoria.
Sorry to hear you are feeling so well, but hope the pizotifen works for you soon. It did for me, although I needed 1 mg for it to be effective. I found being on the piz itself made me feel shattered for a while, but this side effect did pass.
Yes, I get a lot of neck and shoulder pain too. I know some people have found physio useful, but for me it seemed just to aggravate my migraines and set the head pain off more. I found it did get a lot better with medication though, although it didn’t totally stop it, but it changed it from being almost constant to be something occasional.
Hope you are soon feeling much better.
thank you for your reply,am seeing my dr this afternoon as having bouts of normal migraine these past few days. I had gone back on my contraceptive pill and think it may be the culpret, that and day 2 of my no yeast, no caffeine (although I am going down slowly) , limited pain meds ( which I was pumping myself full of up until I read dr.silvers thread, thanks again Barb)and no alcohol, so frustrating and exhausting
I’m so sorry you are dealing with this. Your post could have been mine. This illness really knocks you backwards. And because it is invisible, there is very little in the way of support from people who have not dealt with it.
I have terrible neck pain. I feel it on my right side, which is also the side the MAV likes to strike. I’ve had PT, massage and chiropractor. One chiro did nothing for me and the other made me worse, giving me the worst migraine I’ve ever had. Was in bed for days. So be real careful about who you see. Make sure he or she has a good reputation. The one who messed me up so bad was a nucca certified chiro. I hope I spelled it right. Anyway, it’s where they used the lightest touch during manipulation. It might be great for some but it went dreadfully wrong for me. What helps my neck the most is ibuprofen, and a hot pack. It is temporary but any relief is better than none. And for bad dizziness, a benzodiazepine like Xanax or Ativan helps immensely to take the edge off. Good luck. One thing I have learned is that we all respond so differently to treatments.
thanks for your reply it is SO nice to know we aren’t alone. My dr told me to take some voltaren tablets with a panadol and that did the trick with the heat pack. I haven’t ever tried the other drugs you mentioned.
I had a terrible ‘normal’ migraine yesterday, haven’t had once since my early 20’s and I’m 40 now. Turns out I’m on too much pizotifen so have dropped the dose back to 3 at night and 1 in the morning. I was feeling life wasn’t worth living yesterday if this is going to be my lot in life but as always today is a new day and there is light at the end of the tunnel.
Is there a ‘daily chat’ or somewhere people say how there day is/has been? Just curious? Its probably under my nose on here somewhere
I had terrible neck pain until I went on nori which really helped it. Some of the migraine meds are designed to ease neuropathic/chronic pain so worth bearing in mind x