Ok now I ate... and ready to continue.
Now about a week or two after the break up, the ED was gone because the medicine was different. Not better but different. I still felt awful, I had trouble with sleeping, I was never hungry and I felt like a zombie. I was at a friend's house one night (one of only a few that I get out of the house other than to walk at the park) sitting around a fire and just talking... I went inside of the house and black lines took over my vision. I was effectively blind for approximately five to ten minutes. Which was different from the every day every minute of every day, so I was concerned about that... Two weeks later the smoke detector went off and as I was running downstairs my entire vision went green, then more black lines taking over my vision and I was blind again.
I went to Neurologist #2 and told him that nothing had changed for the better and had two blind episodes after a very strong dose of the Topamax did not work, put me on a new medication Nortripaline. Which is a form of anti depressant that is supposed to help with migraines (at this time I have only had two normal headaches in four months, but they still believed it was Optic Migraines).
I went back to Neurologist #1 who consulted on what medicines I was taking and related that she did not know what was wrong at this point. N1 gave me referrals to cardiologist, rheumatologist, headache center, and sleep center. N1 wished me luck and wanted to be kept in the loop about all of my follow ups.
My family doctor saw me again and wanted me to see an MS specialist (I have that appointment tomorrow). He has been following up on all of my appointments and trying to figure out what to do. He believes it is an autoimmune disease because a family member of mine has a very rare one and it would be even more rare that no one else in the family had one.
I then went to a headache specialist who put me on yet another medication... This one I think is called verapamil another migraine medication. Yet again no change in my vision, hallucinations or disturbances.
Two weeks ago I went to see my N2. Who greeted me at the door and said How is the enigma today? At least he is honest when he said he has no idea what to do. I had taken high doses of several different medicines. He wished me luck and told me I am seeing the best headache specialists in the country and that on the bright side I may have a disease named after me one day...
Next was a cardiologist who is just ordering a couple more tests, but said he was probably going to be unable to help me out... Next was a Rheumatologist, who took some more blood (by now I have had blood drawn four or five times... it gets confusing), but he had no idea what was going on with me and was not in his realm.
A family member of mine works in a hospital and their protocol is when a neurologist can not diagnose they send them to an infectious disease doctor. Luckily I have a friend who married one, so I was able to talk with him on the phone, before the appointment... so it may save me from getting two spinal taps (But it goes to 11). So I will make that appointment tomorrow and probably go this week.
So to sum it all up. I have so many doctors that I can not keep them straight. I have more appointments in the future with doctors I have probably forgot and nothing has changed. I still have movement all around me that is not there. It always seems like there is something off to the side of me moving around. I have flashes of light... to me it always feels like its lightning out or someone is always taking pictures. Then there are the colored lights... green, red, blue all over my vision. When I look at the computer screen there are star bursts all over it. It also happens when I read a book, or stare at the wall. It feels like Independence day all the time (not the movie the holiday).
I would like this to be over. I thought when they told me optic migraines two or three weeks of medicine and I would be back to new. I was not expecting the trembling hands, the weakness in the legs, or the fatigue I feel every day... I just want to be ... better, normal or I don't know... Just not this anymore.
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