I have had ? ME ? Addisons? POTS ? anything you want to insert here!! for a few years now although the Drs I have seen cannot seem to decide what is wrong with me! I have seen every field of specialism there is. I am waiting to see a ME specialist in the new year although I have been waiting 6 months already! The problem is I keep falling asleep in certain situations.My body starts twitching something terrible and I get kind of a 'spaced' feeling although I am fully aware where I am etc.If I'm trying to type or use the mouse my hands just jerk with no control, they have a mind of their own.
I can nod off 3 or 4 times especially when at my computer, in a meeting or at home watching TV or even talking to people.There is no way on earth I can stay awake I feel that ill and I awake totally confused then drop off again then wake etc.
Its driving me mad and causing problems at work as you can imagine.People have to keep kicking me to wake me up or nudging me (although I do not remember this or feel anything)
I have been on the same medication now for years so there is nothing new there. I take Lyrica, Clonidine, Celecoxib, Bueprenorphine, Fludrocortisone, Venlefaxine.
As I said I am under investigation as 3 years ago i suddenly collapsed with fatigue,dizziness,very low BP and Vit D level of 8. The fatigue lasted about a month and I couldn't even lift my head off the pillow I was that weak. I had these episodes roughly every 3 months for 2 years but now they are a lot less frequent unless I go on a long trip or exercise since taking Fludrocortisone.I also have a heart device implanted to record any symptoms I have as a couple of ECG's show Bradycardia I have a family history of HOCM. I have had CT scans,MRI, every blood test known to man, ECG, ECHO.These were for my fatigue though, not for this .Its a waste of time going to my GP.She is useless! No one had even mentioned ME until my previous meticulously went through my medical history, notes etc and though that is what the problem is.Although i have told my other doctors this they refuse to consider it and dismiss it as an illness that doesn't really exist.I have had to fight to get this appointment with thee MR specialist after going round in circles for 3 years.
Does anyone know what is happening to me or what could be the cause of this? I am so desperate and I am worried about my job.I understand the fact there are side effects from medication etc but mine hasn't changed for at least 12 months if not later.I have no social life, my confidence and enthusiasm is shot.
Thank you for anyone who takes the time to read this or who very kindly answers me.I'm not one for writing on forums but everyone seems so nice and friendly and doing all they can to help others.