I have been called special but feel a freak following the last 6 years of on/off hospital stays/ clinics/ MRI's/ drugs etc.. Now I know how a lab rat feels!! If Doctors could just be hoinest & say 'we are not sure, but we need to help you to get to the bottom of this' it would be so much more reassuring!!
So what's my story.
It all began on 11th February 2005 with dizzyness & severe pain going up/ down my spine/ arms & legs. It got to the point where I was following a white light until a work colleague was slapping me round the face to wake me up!! He actually saved my life.
Two days later the MRI showed a shadow (infarct) on the left cerebellum proving I had a stroke, but also a tumour on the pituitary! I had around 15 TIA's before I was prescribed with warfarin to thin the blood.
It transpired the stroke was caused by a patent foramen ovale from birth that I knew nothing about that was closed using a helix septal occluder on 31st January 2006. The pituitary tumour was removed via the nose on 14th April 2006.
Since then I have been on cortisone tablets of varying levels, testogel, ramipril, asprin (replace warfarin).
Ignoring other minor non-linked operations since, everything had seemed to settle down. Then August 11th 2010 I was rushed into hospital with another suspected stroke. This was revised to Hemiplegic Migraines that are apparently known to be a consequence of strokes due to the brain trauma & appear as strokes. In my case the loss of the left arm/ leg was a result but for only a matter of hours before I repaired the link myself. Due to the pituitary drugs, I tried to not take anything else. Eventually I saw a neurologist who confirmed the diagnosis & prescribed proplanolol in a low dose from January 2011 following 7 other minor migraines.
Since January 2011 I suffered 6 more incidents culminating in a major Hemiplegic Migraine on 31st May 2011 that sent me into hospital. I am know on 120mg proplanolol across the day to prevent 'dipping'. Its 'wait & see' time as to how much further I progress.
A couple of factors I have noticed:
1) My high activity levels tend to dip in the middle of the day; the endocrinologist argue against cortisone too frequent & high, my GP recognises the patterns appearing
2) When I have a hemiplegic migraine, if I take extra cortisone I recover better & quicker - is there a link between cortisone levels & hemiplegic migraines? Cortisone aids the defence system as my adrenal glands do not produce enough
I am not at wits end, but they do not appear to talk to each other nor infront of me. I could help them to help others. If anyone else has similar problems, I totally sympathise with them.
Any advice, comments or pointers to medical research would be greatly appreciated.