I joined this board a very sick girl (actually nearly 50 so not such a young girl!), around Nov 07 and had been suffering severely with MAV since 26 March 06. The relief I felt with knowing that other people were suffering just like me, and who felt their life had been ripped away from them just like me and who suffered awful nausea, dizziness, fog, poor concentration, splitting migraine headaches, vertigo…and the list goes on and the condition just seemed to go on and on too, well…it gave me great solace and an empathy so great for others suffering in this way too. When I first joined, I apologised for ‘letting go of all my garbage’ because I had noone who really understood what I was going through, and instead of being told just ‘to get on with it, the power of positive thinking’, I received so much sympathy and in that sympathy and empathy, it instantly made me feel comforted. Sometimes it doesn’t pay to be stoic when you’re just trying to keep your head above water, and others appreciating your situation can give you such comfort that I feel can really make your resolve in your condition become stronger.
Anyway lets fast forward…more empathy and sympathy and much, much information of personal experiences both good by board members as well as bad have helped me consider my very own personal experience and my very own choices about my treatment. Oh and the wonderful information posted really has made me feel more well informed.
I’ve been taking sandomigran .5mg 7 tabs daily for nearly 2 years and klonopin 500 microgram 1 tab per day. My progress has been very slow, but consistent and I think that’s perhaps how this disease moves. My main symptom/s which wouldn’t seem to allow me to progress much further than my 60% was the anxiety/stress issue we all discussed. It wasn’t that I was suffering from stress it was the MAV which was affected by the slightest rise in the anxiety threshold (and that is a very subtle difference). After hearing stories about meds for anxiety and in hearing about Julie’s success with Klonopin too and comparing dosages, I took the plunge and increased my Klonopin from 1 to 3 tabs per day.
I just wanted to say that the change in MY formula was nothing short of miraculous, I’ve enjoyed my son’s 18th birthday this weekend, been to the local pub to celebrate with his friends for several hours on Fri night with extremely minimal difficulty and entertained 40 people at home on Sunday for lunch to celebrate where I actually **DANCED ON A TABLE **and had an absolute ball! It was the most fantastic weekend I’ve spent in 2 years and 2 months (but who’s counting!).
I have finally broken through the 60% glass ceiling and have felt 70% or even more for the past few days. I’m not for one minute going to say that I may not slide backwards as I know I will always have this disease and need to monitor and treat, but I just wanted all my supportive board members to know that there are times to feel desperately sad and have your friends support you and there are times to feel really good and have those same friends rejoice in your wellbeing!
I wish you all much health and wellbeing…but if you’re having a bad day, please tell me too because I’ve been there (and who knows, may go there again) and **I WILL LISTEN AND CARE!**Regards to all, Judy