Sunday, February 07, 2010

Confusion and Memory Loss

Brain fog is a very common symptom for almost every chronic illness I've ever been diagnosed with. So, I've cried and felt 'stupid' but I've never questioned it. I fought back by trying to keep reading and writing even tho I believed I was horrible at it. Coping involved lists, expecting less of myself, and not putting myself in positions where I'd be essential in any way.
However, while reading the Migraines community on LiveJournal I came to realize that part of my problem could be medication side effects. Initially, I thought that my problems with language could be attributed to my migraine preventative and since the resulting communication nightmare was wrecking havoc on my marriage I decided to look up Topamax and consider coming off of it.
(I don't look up my medications online normally. Somehow I think this means that if I do have an adverse reaction at least I'll know it is real. Too many times I've been told that I'm not really having that side effect, I just think I am because I expect to after reading the drug info or am otherwise trying to sabotage things.)
Topamax had all of the side effects I was expecting plus confusion and memory loss. Hmm, coming off this might really be a good idea. But then, I looked up my other medications and found at least two more that could cause confusion. Great. It looked like my own medications could be causing the brain fog. Medications that affect my brain I can see causing 'brain fog' but my stomach medicine and NSAID?
I feel like I've caused my own problems. I just expected the brain fog and was so ashamed of it that I never mentioned it to a doctor. When I mentioned it to Mr. Wacky he tried to be reassuring and comforting which was the most loving thing he could do. However, he never suggested that I talk to my doctor either, partly because he just hasn't perceived my brain fog in the same way I have. (Unfortunately, the problems were so persistent that he came to believe I was being willfully obtuse.)
I'm tempted to give up on doctors and medication. Right now, it feels like they might be doing more harm than good. However, since I'm diabetic and have glaucoma there would be real consequences to this plan. Consequences that Mr. Wacky won't quietly put up with. He's not happy about my willingness to put up with daily migraines, non-functional fingers, and constant nausea and gall bladder pain but he will if I really think it is for the best. However, uncontrolled diabetes and glaucoma are not negotiable. 
Further complicating things is the matter of pain. The worse my pain is the foggier I am. Mr. Wacky confirms this. My overall pain is best managed with narcotics and Relafen. Both of which can cause confusion.
What am I to do? I wish I knew. I should talk to my GP and my neurologist but honestly I'm afraid to. Most of my fears are irrational but they're still real to me. I've made same med changes on my own and I don't know how my doctors will react to that. Plus, my brain fog tends to cause some 'false memories' and I'm afraid that yet again I'll be told that I belong on the psych ward. Worse, the doctor will think that but won't say it and my quality of care will be forever compromised.
My attitude sucks right now. I keep wishing that things could be 'easier.' Giving up may make things simpler but not easier and certainly not better. Right now, I just wish I had a clear way to measure my 'brain fog' so I could tell if the changes I'm making are helping. Why put up with abdominal pain if it isn't helping me?
People talk about being forgetful, not retaining what they read, and having problems with getting the right words out. However, no one seems to mention remembering things 'wrong' or having clear memories of things others tell you never happened. Am I alone in this? Are my fears that I'm 'crazy' justified?
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