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Sunday, July 31, 2011

The Roller Coaster - Medication Update

Yeah! Kinda like this... only FAST!
"Fun is like insurance. The older you get, the more it costs."

I went for 16 days without any medication. This is because of a lapse in my insurance coverage. COBRA is a really expensive pain in the necessity. Everything finally seems to be caught up ...for now.

The first few days were OK. I really didn't notice any change. I was thinking, "Maybe I really don't need to be taking all this stuff anyway."
Hah! Shows what I know.

The "stuff" I am referring to in particular is Aricept 23, Namenda, and Ritalin. Quite a mental cocktail.

Before the first week was over, the changes started. I did not have any noticeable physical withdrawal. Yay! But wait! There's more.

I will try to describe what it felt like to me. Imagine you are on a roller coaster. A really fast, high, furious roller coaster. We have all been there at some time or other. Hanging on for dear life as the coaster careens down and around, and maybe upside down. Slamming our bodies right and left, up and down. Weightless, then extra gravity. It only lasts a few minutes. Then it is over.

What do you remember of the ride?

What kind of trees were nearby. Were there houses. Was it a sunny day? Birds? Who knows. Everything went by to fast to notice. All you can concentrate on is your hands gripping the bar, and the sensations, and maybe forcing yourself to let go now and then, and wave your arms in the air like an idiot. You may remember the coaster. It was probably red. Mine always was.

Well, that is kinda what it was like without the medications. The whole world was coming at me so fast all I could do was hang on. Either that, or I was moving so slowly that it seemed like the whole world was moving faster. Not much difference from my perspective.

I don't remember much of the 16 days I was without my medications. Seriously. When you are on a roller coaster how much of it do you remember afterwards? Not much of what was going on around you. Just you, trying to "get through it."

So it was for me. I obviously am not a roller coaster thrill seeker type. I got through it. My way of coping was to close the doors, and hibernate for most of 2 weeks. I think it was my way of limiting the external stimulus. Cutting down the stress levels. I guess it worked.

So, after 16 days, I got back on all of my medications. I suppose I could have eased back into them, but I figured my body would remember, and I would not have all of the side effects like I did when I first started taking the medications.

I was sorta right. I had a couple rough days, one in particular the day after I started taking all of my medications again. Most of my problems were gastrointestinal. I never made it out the door that second day. I never made it off the couch. I caught up on a lot of TV programs I had recorded. It was fine. I got through it. I really don't think my friends had clue what was going on, and at the time I really couldn't explain it to them.

Being without the medications was very informative. I learned that the Ritalin does help, and that it helps a lot. I was thinking of discontinuing it. It is actually what made things bearable for me. I had an extra months supply, and started taking it after the first week when things got really hard to cope with. The world was coming at me too fast. I took the Ritalin, and the world slowed down, or maybe I sped up. It was as if it anchored me to my surroundings, and I could function.

I also learned that my initiative is worse than a year ago, and my attention deficit is a major impairment. My cognitions didn't change much - I could still do mental arithmetic - but my Dysexecutive Syndrome is probably slightly advanced overall. But I also learned that I could still cope. I got through it.

I have been back on my medications for a couple of weeks now, and things are back to normal. I now realize just how dependent I am on these medications - none of which are approved for FTD. Well ...I approve of them!

Comments and questions are welcome.


  1. been there and done that with medication withdrawal. I ended up in the hospital because of the side affect of one of them had on me when I was out. I started taking Ritalin myself for the last several months. Things seem to be more focused and I have been able to do some simple math. It's good to see you doing so well. I'm about a year ahead of you as diagnosis goes, but coping pretty good. Have very down days where I don't want anyone to talk to me or I might just take a head or two off. Had a CT scan in December and it showed progression of the disease. I feel lost most days, but my wife takes care of me. Finding it harder to use grammer and spelling harder now. Have to ask my wife how to spell words often. Sometimes I have wished that I could just die because of the crazy stuff going on in my head. Have really no emotions at all anymore, just mad all the time. Stay strong my friend.

  2. Thanks for the comment, Kevin.

    I am glad to hear you are coping pretty good on most days. I don't have so much anger, but I do get very withdrawn and want nothing to do with anyone at times. We just do what we can. Some days are better than others.

  3. Wishing you and Kevin more good days than bad. I think you are both pretty brave, moving forward with this and handling it as well as you are.