peregrine Posted August 22, 2012 Report Share Posted August 22, 2012 In a quest to look more at the spaciness issue, my new neurologist suggested I try upping the dose of my pyridostigmine from 60mg 3x/day to 120mg 3x/day (via 90mg). It seemed like the 90mg dose was making the spaciness slightly worse, but then it went back to normal. Three weeks after starting the 90, I tried 120mg - partially to see if it would worsen the spaciness (conclusion: unsure) and partly to see if it would have any other greater effect (conclusion: no).Yesterday I had a terrible headache, plus a brief adrenaline surge-type-thing, and after a 2-hour car ride I started having more severe speech trouble. I get some speech issues with presyncope, but this was no presyncope - just weirdly wiggly vision and speech issues and confusion. I got overwhelmed by trying to talk when other people did. Thankfully my partner was there and led me around the grocery store and his parents were surprisingly able to cope. (his dad Doesn't Understand my joint problems, but he understands pooling!) I figured I'd sleep it off - it improved a bit with lying down - and seemed fine this morning.Except not... I took my usual morning meds (including 120mg of the pyridostigmine), went off to a meeting, and found that my vision was squiggly a bit and that I was again having a great deal of difficulty speaking. Fortunately I was able to present the thing I needed to present at the meeting - hooray for having it written out in notes in advance, meaning I could largely read it off the screen, which is easier for me when speech is a problem! - but I could barely comment on things other folks were presenting. I spent a lot of the meeting using body language and grunts to indicate agreement - frustrating. I came home (thankfully the committee chair was able to give me a ride home!), napped 2.5 hours, and felt somewhat better, though still messy. Again, no presyncope. Just for fun, I looked at the side effects for pyridostigmine this evening, and under the "call your doctor immediately" heading there was the side effect "slurred speech" (and confusion too, of course). Lovely! I had this same effect on tricyclic antidepressants (imipramine). I don't need *more* things causing speech issues! I'm seeing the neurologist next week - should I call tomorrow morning and ask what to do? Has anyone else had this happen to them with pyridostigmine, and if so, did it resolve? Good thing the med hasn't been that effective... Quote Link to comment Share on other sites More sharing options...
flyingsquirrel Posted August 22, 2012 Report Share Posted August 22, 2012 Are the speech problems caused by muscle weakness or is more of a 'higher brain function' problem?High doeses of pyridostigmine can cause muscle weakness, but it is not supposed to affect the brain. (Drugs in the same class that are also not supposed to cross the blood-brain barrier have been shown to do so in states of extreme physiological stress.) Other symptoms that would be expected with this kind of "overdose" would be increased sweating, increased salivation, diarrhea, and constricted pupils. Basically any part of the body that can increase fluid production, does. There is no harm in calling your neuro and asking what to do. If they can have you adjust your dose now, then check you when you go in, you will have a much more productive appt. Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 22, 2012 Author Report Share Posted August 22, 2012 More a higher brain issue - I also had trouble expressing myself in, e.g., fingerspelling. If I concentrate I can talk somewhat more clearly, but it takes a lot of mental energy to do so. There's probably also some muscle weakness, but most of it seems to be higher brain function.Interesting - it doesn't cross the blood-brain barrier? I wonder why my doctor prescribed it for spaciness, then, since we're 99% sure that's CNS in origin? Hunh.Will call them today. I definitely had cold sweats both times, but didn't notice the others. Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 22, 2012 Author Report Share Posted August 22, 2012 Surprisingly I got his office and he was actually in - amazing! He said to drop to 60mg 3x/day, since the 90mg seemed to have either no or a mild negative effect and the 120 wasn't helping (and caused the speech issues). Quote Link to comment Share on other sites More sharing options...
flyingsquirrel Posted August 22, 2012 Report Share Posted August 22, 2012 I hope it helps! Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted August 23, 2012 Report Share Posted August 23, 2012 Interesting. So glad you posted. I'm on Pyridostigmine 60mg 3x day for a few months- upped from a smaller dose since Feb. I often have speech probs but I have not associated w the meds. Think I've had some degree of it all along but notice when I am stressed or Ive been upright a long time (More than a few hours) it gets worse. In order to speak I have to close my eyes to concentrate. Sounds like you handled your meeting well. I'm not working at this time and I feel for you and the situation you are in. Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 23, 2012 Author Report Share Posted August 23, 2012 Well, no serious repeats of the speech issues - at least nothing more than what stress, etc usually causes. I'm similar to Kelly - stressed or upright position is a great (well, not so great!) trigger for speech issues. Back to 60mg 3x now, which worked well today. Quote Link to comment Share on other sites More sharing options...
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