I’ve been sufffering MAV since Jan 2013. Have been under the care of a neuro since Sept 2013. I was taking feldene (strong anti-inflam), endep (amitryitaline) 50mg, deraline (beta blocker) 30mg morning/night and magnesium, fish oil, vit b12 which had me functioning pretty well but still unable to work, but I had no pain or dizziness, just exhausted and needed daily rest. I had a bad bout of salmonella and unfortunately the feldene has caused a stomach ulcer so I can no longer take it. I am suffering terribly daily - chronic neck/shoulder pain, dizziness, exhaustion so pretty much house bound but try for a 15-30 min walk but floored for hours after. My neuro is at a loss and has suggested “throwing money at physio” and come and see him in 3 months!! So I’m off to my GP today as I’ve called around other neuro’s and it’s a wait until January 2015
I’ve been doing lots of reading and searching on this forum, thank you all for such wonderful information.
My question is what should I do? Get off the beta blocker? Try a different anti-depressant? Introduce a calcium channeller? I just don’t know what way to go and waiting 5 months is so overwhelmingly scary. Any suggestions would be greatly appreciated.
I’ve also booked in to discuss botox treatment.
I’ve accepted my lot, but surely I can get better than this!!
Thanks for listening
It seems you need to get the pain under control. Can you try Lyrica, prescribed for neuropathic pain, it helps me.
I found the anti-depressants pretty useless. Since being on Lyrica, I need much less ibuprofen or valium.
Regarding the physio, only get very gentle work done to your neck area, someone who possibly understands about re-setting neuropathic pain signals.
I tried one session of traction, to see what it was like, basically a machine with a pulley system, but found it placed too much pressure on my jaw,
and developed an eyelid flutter for a couple of weeks. No machinery can compare to the touch of a human hand, just don’t get any cervical manipulation done.
I understand your exhaustion, is there something in your home life that is draining you that can be changed in some way?
I hope the day improves for you.
thanks for your reply Reb. I actually asked my neuro about Lyrica and he said it is no good for this illness?? My home life is pretty good but I have a 7 yr old and husband who need me. I am afraid I’m my own worst enemy as I try and push myself by walking etc so it’s the pressures I probably place on myself that cause it. I do see a therapist and I have come to accept MAV but gez it’s hard going from a busy working mum that loved cardio exercise to being someone who needs rest all the time to function ‘normally’ like clean the house, cook and all that goes with running a household overwhelms me at times. sigh it just all seems like a long battle and of course wouldn’t we all love a quick fix!!
I have seen my gp and we are going to gradually get me off the beta blocker and see if that can’t help the fatigue, try the botox and then wait and see. I’m crossing my fingers there is a cancellation for a neuro.