So after googalizing I managed to find the details of the Dystonia association and sent a mail. A very kind lady called me back on the Monday and told me which docs in Cape Town specialize in movement disorders and I made an appointment with neuro Doc Opperman. My present neuro although sweet doesn't seem to have much knowledge of tardive dyskenesia or dystonias. Through her I had the MRI which revealed the cyst and then went off to the neurosurgeon to have it removed so she did have her place in the medical nightmare timeline. My GP knows a little. My neurosurgeon not too much either. As for my dismissive psychiatrist who prescribed the Cymgen in the first place, well she has done nothing except report the wrong reaction to the drug company and refused to believe me when I insisted I knew what I had.
Granted what I have is rare and is it almost unheard of to have this reaction to such a low dose after only 19 days on the meds but it is what it is. I have heard many other stories since of bad reactions to medications. I wish I could sue the drug company but my resources vs theirs, a little different. If I was in the US I bet I could! Back in August I woke up every morning waiting for it to be gone. The crazy relentless tongue spasms, sore palate, dry lips. Thank God I didn't know then I would still have it now and according to the docs, its irreversible, like FOREVER. That's a long time to live in this much pain and discomfort so naturally I cannot accept this quality of life. My sore back, my Agatha, sure, I can deal with that. This? No f''íng way. Most dystonias are treated with botox but clearly paralyzing my tongue would not work. Anyway, moaning over, let me get to the positive side and report back of the doc.
So off I went and my darling friend Tracey came with for moral support and inappropriate humour. I was a little early because I was nervous and you never know what could happen on that drive to town with traffic etc. Filled out the form, laughed a bit, laughed a bit more and then it was our turn. The doc is in his mid forties and has a great bedside manner. Can you actually believe a neuro that is funny and chatty? In fact Tracey wandered if he was gay but my gaydar didn't beep. (No offense meant to all the straight guys out there) He agrees its a tardive dyskensia/lingual dystonia brought upon by my reaction to the meds. I have 3 treatment options the first being conservative and taking meds at night usually prescribed for high blood pressure. The teensy weensy prob is I have very low blood pressure. He said he was going to pretend not to hear that and I should just pour salt on my arm and lick it off. I guess the tequila would be optional. I will only know in 2 weeks if its actually working and now that I am off the Rivitrol, my mouth is incredibly painful and speech is difficult. I thought the Rivotril didn't help at all anymore but I guess it did. The next option is an anti-psychotic AD kind of med and you know how I feel about those. In fact I have tried this particular one and it made me clench my jaw and hunch my shoulders. Next option is meds that they don't have in SA as is section 21. R3500 for 6 months supply which isn't too bad but Discovery Medical Aid don't pay for it. If the BP meds don't work I am skipping straight to the overseas meds. I need relief and I want to be able to speak properly again. I need this to be under control. The crap thing is this is still a left over consequence of Singapore. I was so screwed, so paralyzed by all that stress and I had to sort myself out and get help. I thought seeing the psychologist and the psyche was being responsible. Not my usual stubborn self. I really believe meds have their place and I know I was just extremely unfortunate to be one of the few people to have such adverse side effects to a medicine that is used all the time and gives great relief to many. My back was amazing on it as its also used for chronic back pain.
Anyhoo, hope junkie will take these meds and wait impatiently for 2 weeks. I will continue to pray/moan/nag God continuously to heal me. Drinking cold water helps, hot tea and swimming so I will do that too. I will do ANYTHING except live like this so bear with me and I will eventually be back to the old me and we can chat about other stuff than my boring pulsing painful tongue! Aaaaaaargh!!!!