No "wonder drug" and April updates

Of course, we all know there is no such thing as a wonder drug...but I was foolishly hoping there might be something out there to help me with this dreaded fatigue. Back in November the neuro-psychologists that I saw said I would be a good candidate for fatigue medication. I was skeptical because I HATE taking medication, so it was a complete stretch that this could be a part of my solution. I am super sensitive and usually react negatively to medications, but after reading the side effects for the first purposed fatigue medication, Amantadine,...I thought the possible listed side effects didn't seem so terrible and it was worth a try. My fatigue is so terrible that I am willing to give almost anything a try.
This past month seemed like a good time to try to tackle my remaining deficits and hope for the best. My plan was to see a few new neurologists...hoping one might be a match to work with me on my remaining issues. It turned out to be a complete disaster. The doctors were not good and the medication...oh....YUCK!! The first neurologist was actually very smart...I think...but hardly gave me any time and he just wasn't my type. He said some of my complaints were permanent, which I never want to hear, and don't agree with either. How does he know that my leg/foot muscles will never get better and my left shoe will always fall off? I don't agree and I don't want to work with a doctor like that. He also prescribed the first medication. He said there were 3 that are used commonly for post stoke fatigue, and that if the first didn't work, we could move onto the others. He suggested that I start one a tiny dose(50mg) of Amantadine and work up to a full dose(200mg) in a month's time. He said the primary side effects are GI related and are normally only seen when taking large(greater than 200mg/day) doses. I went home and looked it up right away. It's actually an old anti-viral drug that some people noticed the side effect of fatigue relief. I read several positive testimonials, and hoped this could work like magic for me. I was hoping that at the least I might get some placebo effects because I wanted it to work so badly.I took 50mg once a day for 2 days and I thought I was going to die. It was horrible. My heart was racing/pounding, anxiety like crazy, neck and shoulder pain (tension type pain),zero patience, terrible insomnia. I was still exhausted but I felt so uptight I couldn't sleep. There was nothing to be stressed out about and since I've had surgery, I am always super calm...it was obviously the drug, although nothing that I experienced was listed as a possible side effect. I felt horrible, and decided even though I was only 2 days in, I could not take any more. The next day(day 3) I had already abandoned hope that this was my answer and I didn't take it, I got the worst headache I've had in a long time. My eyes were messed up, dizzy, nauseous, excruciating pain. Like a migraine, but slightly different. The next day (day 4) it was gone...thank god!!! That's it no medications for me. I decided I need to be more patient and wait it out. I need to stick with the basics: good food, exercise, and regular sleep. There is no wonder drug to save me from this fatigue monster. I sorta feel like I wussed out only two days in. I wanted to know that I've tried everything to reclaim my life, but my experience was so horrible with the Amantadine, I just can't bring myself to mess with my head and body like that again. I just keep asking for patience. I am a doer. I want a plan and the energy to complete it. I would rather work super hard at something than stand around and wait for it to be done. "Waiting" to get better is really hard for me.

I also saw another neurologist later in the month...the WORST one yet...and that's saying a lot because I've seen my share of clowns. I left in tears because I felt like he was my last hope to work with me on my remaining deficits. I shouldn't have let it bother me, but it did at the time. Looks like I will be working on my own. He clearly didn't know anything. I could ramble about all the misinformation he gave me, but I'll spare you the details. Basically, he said all my problems were "in my head", which I always partly agree with. ;) Seizures, stroke, bleeding angioma...yes, all technically in my "head"...but fictional....oh I wish...that would be easier to fix right?!! This has been an ongoing issue for me. If you "look good", there is nothing wrong with you, no matter how much "proof"(MRI's, EEGs, etc.) you have that something is not right. I can just hardly wait to feel good again and forget all these clowns that don't have a clue.


I have one last specialist to see next month, an endocrinologist. We'll see what he comes up with, but so far the doctors have been a waste of time.


I also attended a new stroke support group this month. I have wanted to attend some sort of support group forever, but there were not any in our local community. I saw an ad  for a new group right by house. Perfect! It was great, although I always feel like I don't quite fit in. It doesn't matter...I do fit in. They just don't see it yet. Like many brain injury survivors, my deficits are not usually immediately visible.