Hi Guys,
I’m sorry if this has already been answered before, but I’m really struggling to find a solution.
Has anyone had ANY relief from daily pain from headaches or neck pain from ANY medication at all?
I’ve had both for over 10 years. One day with no pain would be a miracle.
To be honest, I’d rather shift the dizziness, but to relieve the pain would be a little added bonus.
Does anyone know Dr S’s views on Botox?
Thanks x
Hi missmoss83 
i am in the same boat i have had neck stiffness / pain for years.
The only thing that i find helps is a massage
i want to know his views on botox and supplements e.g magnesium, B2, Co-enzyme Q10 etc
I have had neck pain for years and it became unbearable once I got MAV. As soon as I took my first 5mg Nori it started to improve and it is a lot better now. I won’t say the neck pain has gone completely because it does tense up at times and aches somewhat by the end of the day sometimes but Nori definitely made my neck pain loads better than it was. I see you are already on Nori though so obviously it hasn’t helped you in the same way. There are some other MAV meds which can also help neuropathic/chronic pain I am sure.
My neck pain is starting to improve with the Topamax and my head feels different. Headaches were never my primary complaint, but the right side of my head felt very different than the left side of my head before I started Topamax. It was “airy,” almost weightless. That feeling is much improved.
Hi missmoss,
I get neck pain usually a day or so after my mav has been really bad and nothing can touch it, not neurofen, paracetamol, codine or massages (they make it much much worse!). Deep heat gave some temporary relief (but nothing major) and the dr suggested valium but I declined.
Hope you find something that helps
I’m also on Nori, 10mg, and don’t notice any relief on normal aches and pains with it. I wish I did, the pain keeps me up at night a lot, and lack of sleep makes the MAV worse… vicious cycle.
Hey MM, that sucks that you have neck and head pain every day. I have ALOT of neck pain too. I don’t often get headaches anymore but had the most horrible pressure headache when this first started, it lasted a good couple of months and felt like I had a metal helmet on my head (if that makes sense!!!). I haven’t taken any over the counter pain relief meds but I’m also keen to find out about botox. Have you ever asked Dr. S about it? We all seem to have neck tension and muscular pain, I wonder how much it contributes to worsening the dizziness? I recks it might be worth a try…maybe in easing the muscular tension we might in turn ease the dizziness/migraine cycle. I think that you are entitiled to an NHS referral if you have chronic migraine which we all qualify as…xx
I find plain old ibuprofen helps with my neck pain, but I can’t take anything paracetamol based too often as I end up getting rebound headaches. I’m sure you must have already tried that Miss Moss, but have you tried something stronger, like that volterol gel you can now buy over the counter (think volterol used to be prescription only here in the UK?).
Had lots of neck pain over the years. Always was a ‘marker’ for me that a migraine was about to happen. Stiff/sore neck & shoulders was a daily part of MAV for me and didn’t feel relief until I got up to 100mg Dothep. Now I get the neck pain when I overdo things (plus the ear fullness, nausea & 'heavy head). It’s a sign that the migraine brain is getting 'revved up!. I use Voltaren gel on my neck & get some relief. Physio & acupuncture did nothing for me.
As to Botox - I’ve never tried it. My sister-in-law has Distonic tremor (affecting her head control) she has had a series of Botox injections in her neck & shoulders which gave her relief but she also had quite a few side effects which fortunately are now wearing off.
Barb
Barb, I’m glad the voltaren helps you a bit. It does squat for me. I feel very lucky that I don’t have your daily pain, MM, at least not regularly. My best bud just got a custom ankle brace which he tells me has reduced his experience (from various lower extremity injuries and surgeries) from agony to pain. Also something I can’t get my head around. My head/neck pains have always been handle-able through various somatotherapies, from osteopathy to rolfing to a pt’s massage. Nowadays I get to the pool but head to the gym first just to use their “jungle gym” of tubing with instructions for a thorough top-to-bottom stretching routine. And then swim laps. I haven’t the slightest idea whether anything like this would help you, MM. I sure hope you do find something, whether it’s the botox or whatever. You’re so generous when you response to other people’s misery.
As for the dizzies, I was able to nip them today. It was a weather change day, a cold front came in. And so did an electrical job. I offered to come by around noon, I agreed to make it ~1 PM. I was to check out some non-working lights on the outside of his warehouse. So I went out, probably not warmly enough dressed, and loaded a ladder in my van and another, bigger and heavier, on its roof. Walked back in my house and felt dizzy, headachey and queasy. I was in no shape to go out again, even after lying in a dark room for a few minutes. I took a benzodiazepine and lay there another half hour. It worked, and I was able to get up and drive over, spend 2-plus hours hauling ladders, climbing them, testing wires, all that stuff without any sick or woozy feelings or thickheadedness.
Crikey David - I can’t even climb the kitchen steps! Hope you have a safety harness!
Barb
I’m sorry, guys–Barb and anyone else like Barb who’s in a similar pickle when it comes to climbing. I used to have very, very good balance, and now I still have good balance when this isn’t hitting me. I know that a lot of my friends here haven’t gotten to as good a place in a number of ways. I did go the first at least six months unable to walk without holding on to something, so I do ken not being able to climb the kitchen stair/stool.