Becia Posted November 10, 2014 Report Share Posted November 10, 2014 Has anyone else experienced a delayed medication reaction, for lack of better words for it? For example, I've been on mestinon since September, and I've had some side effects ever since the first dose, but as time has gone by, these effects and reactions are getting more and more severe and harder to take care of. Nausea has given way to serious serious vomiting, my muscle twitching started off as not too bad in the beginning, and now everything twitches after a dose, to the point my eyes go insane when I try to focus, and when I do stand, my body feels like jello with as much twitching my muscles do. In the beginning, I had some minor stomach cramps, but it's progresively getting more and more severe, to the point I'm doubled over and crying from the pain (it's a sharp, stabbing pain).Today was the worst I've ever felt with these, and I'm sitting here going "shouldn't some of this be getting better? It's been nearly two months, I need a break!" It hurt bad enough I screamed, and startled my neighbor next door, who came to check on me. I know with me and side effects, I feel some no matter how long it's been, but I've never had any get worse on me like this one. With midodrine, I still get the goosebumps and such, Florinef still gives me migraines everyday, and maybe I've managed those better, but I don't think I can do the mestinon anymore. I can handle the seizures I've been having, but this pain and unretractable vomiting is a deal breaker for me right now. I can't afford to lose any more fluids. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 10, 2014 Report Share Posted November 10, 2014 When I titrated up on Topamax, I progressively had trouble breathing. It got to the point at 8 weeks that I couldn't say a whole sentence without choking. Once I titrated off of it, it got better. I also tried to stay on a moderate does of prednisone long term. I was having no ill side effects from it. Then, at 2 1/2 months, I woke up one morning red ans swollen over my whole body like I had been stung by a swarm of bees. My skin stung like a severe sunburn. I was a reaction to the prednisone called Stevens-Johnson Syndrome. I had just the beginnings of it and new immediately that it was a drug reaction. I called my doc and he had me stop the prednisone cold turkey (there really was no choice on that). It is possible to hage delayed or worsening reactions to meds over time. Hope you get it sorted out. Quote Link to comment Share on other sites More sharing options...
gjensen Posted November 10, 2014 Report Share Posted November 10, 2014 There are some medications that I tolerated before that I cannot tolerate now. I could not tolerate Mestinon from the beginning. It was no fun. I tried it 4x to give it a fair shot, and each time was like riding a roller coaster. But it was no fun. I was disappointed because so many benefit from it. Quote Link to comment Share on other sites More sharing options...
corina Posted November 10, 2014 Report Share Posted November 10, 2014 Becia, have you been offered a stomach protector to go with the mestinon? It's what helps me loads. It won't do anything to improve your focussing probems though . . . . . . Quote Link to comment Share on other sites More sharing options...
Becia Posted November 12, 2014 Author Report Share Posted November 12, 2014 No stomach protector being offered, but I've tried acidophilus and eating yogurt at home, which is what I do when have to take antibiotics and such because they tear my stomach up. And yeah, the tremors and twitching are insane. At first I thought it was just eyelid twitching, but I held my eyes closed one time,and could feel my eyes moving under my lids because everything Was having a heyday. The vomiting was bad enough today that I nearly threw up on my therapists shoes today.... I was trying to hold it together for our session, since we were talking about how to approach asking to come off this med, and weighing pros and cons. He looked up at me and was like "we are cutting today short, and I'm escorting you downstairs". I made it as far as out the office door and down the hallway partially before swerving to rush into the bathroom. Never throw up red Gatorade (my favorite flavor is fruit punch and berry, which is all I have right now), because it can scare ya pretty good, lol. time to switch to lemon lime for a bit, lol. Quote Link to comment Share on other sites More sharing options...
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