After being diagnosed with MAV during Sept 2012 by Prof Luxon - I couldn’t help feeling dubious initially. I then found this forum and after reading through many posts, I realised that my diagnosis must be correct as I was reading an almost exact reflection of how I felt. I must say, I actually felt a bit overwhelmed when I read some of the eloquent descriptions and metaphors used. I felt a very reassuring positivity on not being alone anymore in my own private hell.
I am extremely fortunate to have incredible family and friends around me - all doing their best to support me over the last year or so through this and now, due to this forum, I think their (and my) better understanding of this condition have helped with all of our patience! Thank you all for that - very much!
I am now at the stage of 40mg of Nortriptyline, titrating from 10mg, by 10mg every two weeks. I am feeling a few of the side effects, such a pins and needles in my fingers, very vivid dreams, and a dry mouth - increasing especially for a few days after upping the medicine. The dizziness and feeling of walking on a bouncy castle with an elastic rope attached to one side (always pulling me to the left!) increases also for a few days when I titrate.
Unfortunately, I have had no overall improvement as of yet from the MAV symptoms. I am starting to feel a little despondent after the eight weeks or so of this treatment being the correct one for me. My positivity throughout the last year, aided by my wonderful family and friends, I am sure has been the main driving force of getting to where I am today, but I am struggling now…
I understand that this is a long, slow and winding road we find ourselves on as sufferers of MAV, and that there are numerous different medications to try, but I am unsure of how long one medication should be given before realising that it is not helping and to move on to the next. I am also unsure of what to try next? I believe that my GP is, as very helpful as she is, not too knowledgeable about this condition and has been guided only by Prof. Luxon in the original treatment plan of Nortriptyline. No other medication was mentioned to try if Nortriptyline wasn’t effective.
I would be very grateful for any points of view from those that whom, I am sure know best – those that are, or have been on this same road as me. The need to keep positive and as focused as my foggy brain can be at this moment is my main priority, and if “impatience” is the general consensus here then I am sure it will help with my focus to keep at it!
Thank you in advance.