Alzheimers drugs inhibit the chemical that inhibits acetyl choline. Seems that is one of the issues at the root of our problems. I have complained a lot on here about my brain declining. Has anyone tried aricept? I was really excited about it, until I read the major side effects seem in conflict with POTS. I don't get it. Anyone know?

I don't know and I've never tried these meds but I remember years ago my POTS specialist saying there were some doctors using Alzheimers drugs on POTS patients with mixed results - I never followed up with him.

I believe that is the drug my sister tried. It made her violently ill. She said she had never been so sick in her life.

Nesh---
I've thought about this as well. I'll have to dig up my research as to the exact reasons why, but in my case I decided against it for now.

Reason being that in vasovagal syncope (not sure about POTS though) there could be an overstimulation of the vagus nerve by too much acetylcholine. And though I may be low in it in some other part of my body, it could potentially make the vagus nerve acetylcholine levels too high. And from what I remember, I was concerned for patients with seizure activity associated with their illness that the acetylcholine level being too high in the vagus nerve could turn out to make things worse.

Side note: one patient with seizure activity reported getting better on an anti-acetylcholine drug and then mysteriously it abruptly stopped helping her. Never heard from her what happened next. Suggested different types of anti-cholinergics to her. ??

Hate to disappoint and perhaps I'm wrong in regard to your case, but I think it's going to take a lot more than just working with the acetylcholine.

Have you had a full panel amino acid screening done yet?

Well after much reading a year ago, I realized we needed acetylcholine for noripenphrin transport (NET). acetylcholine is broken down by acetylchoniterase (sp?). Thus, I wrote to my docs saying I thought it might help to have an inhibiter of acetylcholiniterase. There is a lot of research about this, and I have a new neuro. Since I have had really bad memory problems (losing things, word retrieval, repeating myself and not remembering), the alzheimer drugs actually are the acetylcholiniterase inhibitors. I am first on a BB for a week (which is awful) and then try the aricept. Yes, I hear it can cause a lot of stomache upset. My dad is on it, and he is getting worse. Seems there is a common theme here. He got his from chemotherapy (chemobrain), which can happen to some. It is so hard to watch.

oh yeah, I meant to say (I am such a flake now) that I said this a year ago and wrote out my rationale. A year later, it took a new neuro who specializes in POTS to get the docs to listen to me. There was something to my dismissed theory. In the meantime, I am trying to keep my job as a professor and it is pretty tough when I am this tired, this unfocused an confused, and just knowing I am going downhill. I went from really smart to a total ditz.

oh yeah, I have low protein, low everything. Living on trace amounts of several things, buT at least I know now why I gained 20 lbs in 2 weeks, when I never could gain an ounce even eating a whole carton of Ben and Jerry's before bed. I don't eat, cuz I am not hungry, and I have lost my sense of time. Well, I gained the weight cuz low D causes obesity. So my new endocrin is taking care of that! I should feel a lot better in many ways from it, but I stay cautious about being to optimistic.

quote:

but I stay cautious about being to optimistic.

Maybe this should be our motto.

Nesh, interesting that you said low D causes obesity. Did you find out from your research or did a doc tell you?

This might have something to do with my weight gain.

Nesh, you are talking about Vit D - right? or am I missing something?

our motto but too, not to! Okay, as I have reported, i couldnt stand the BB, started the aricept and finally something seems to be keeping me in the game. The vitamin D may be it. I am on 100,000 whatever units. That is double the usual 50,000 therapeutic dose. OMG, it does wonders for the mood. I cannot believe it. NO SSRI or wellbutrin (which makes no sense to take when we already have high NE and cannot absorb it right). I also take calctrate with D and drink OJ with D. I just keep feeling better and better in some ways...mood, sleep patterns, sense of time, but today I just couldn't go to sleep and am up till 4 AM like before. Probably shouldn't sit at the computer after a certain time. I also am timing myself, like how long it actually takes to get to work. I thought it was 5 min, it is 12 min plus walking from the parking to my lab, how long I am in the shower, etc. I am trying so hard to figure out everything. So, not sure if it is the aricept or D. I think the D is helping my mood and my concept of time, and the aricept is helping with word retrieval and just getting lost in mid sentence or talking in circles. As for weight, just go to the Vit D council web site. It is all over the internet about the effects of severe, and I mean severe, deficiency. I may have had this for years, because I have had premenopausal osteopenia just about at osteoporosis now. So, who knows if the weight gain was from it. I was so horribly constipated this week, I stopped eating. Well, finally....and so, i noticed I was up 4 pounds! What the heck? I can starve and gain now, where I used to have to eat cartons of ben and jerry's nightly before bed. I have lost about 7 or 8 lbs out of the 20, but keep in mind, I was struggling to stay at 100 before. Now I gained 2 back (I have a very good scale). And really would like to get down to 107. I had to buy new clothes. So who knows. I am hoping that the D works and gets my weight more stable. Dontcha just love this crazy stuff???