Alicia479 Posted July 18, 2005 Report Share Posted July 18, 2005 I started taking Mestinon at 30 mg 3 times a day three weeks ago. It helped so much. Then they moved it up to 60 mg 3 times a day after two weeks. Today they moved me up to the 180 mg time release tablet and my body is going crazy. My legs, abdomonal muslces, and togue are twitching really bad. Has anyone else experienced this? I am going to call my doc but I doubt he knows anything himself. He talked to Dr. Grubb a few weeks ago who recommended this so I dont think he knows anything personally but I will try. Is this something that will go away after awhile after my body gets used to it or is it a sign this is too much for my body? Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted July 18, 2005 Report Share Posted July 18, 2005 OMG!!!! I am experiencing the same thing! espacially in the tongue and face.. I take 180mg of mestinon 2xs a day.. and the facial twitching and stuff started after my dose was upped to 180 2xs a day...I get the facial twtiching and difficulty speaking... I do not know if it is related to the the Mestinon or not, that would be a good question for Dr.Grubb though...I havent found anything to relieve the twtiching...with the tongue... does it feel thick? and do you have difficulty speaking? And just feel really "weird" in general.. not like your usual self??I wish I could offer you something more! Just know that you are not alone!Linda Quote Link to comment Share on other sites More sharing options...
Alicia479 Posted July 18, 2005 Author Report Share Posted July 18, 2005 OMG!!!! I am experiencing the same thing! espacially in the tongue and face.. I take 180mg of mestinon 2xs a day.. and the facial twitching and stuff started after my dose was upped to 180 2xs a day...I get the facial twtiching and difficulty speaking... I do not know if it is related to the the Mestinon or not, that would be a good question for Dr.Grubb though...I havent found anything to relieve the twtiching...with the tongue... does it feel thick? and do you have difficulty speaking? And just feel really "weird" in general.. not like your usual self??I wish I could offer you something more! Just know that you are not alone!Linda<{POST_SNAPBACK}>Thanks. My tongue does not feel thinck but I sound funny when I talk. I think it is b/c my tongue is spasming so much. I am really starting to think this may just be too much of a dose for my body Quote Link to comment Share on other sites More sharing options...
Sunfish Posted July 18, 2005 Report Share Posted July 18, 2005 alicia & linda - i know we're all so very different, but i have been on a much smaller dose of mestinon since may & have not had any of the effects you're mentioning. so...i think it's something to at least broach with your doctors b/c the side effects you're mentioning aren't an autonomatic. for me i have had increased muscle contractions in my GI tract, but this is a positive thing for me as i was having such desperately slow motility...it's nothing i feel aside from the fact that i'm not as bloated & nauseous. good luck!:-)melissa Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted July 18, 2005 Report Share Posted July 18, 2005 I just started last week and I don't have the symptoms you descirbed at least not yet. I'm only on 30 mg once a day, next week 60 and so forth. I did black out for the first time yesterday and I don't know if it was from that med or not. I looked in the mirror and my pupils were contracting and wouldn't settle down. Is this familiar.Dayna Quote Link to comment Share on other sites More sharing options...
jensen8503 Posted July 19, 2005 Report Share Posted July 19, 2005 I started taking Mestinon at 30 mg 3 times a day three weeks ago. It helped so much. Then they moved it up to 60 mg 3 times a day after two weeks. Today they moved me up to the 180 mg time release tablet and my body is going crazy. My legs, abdomonal muslces, and togue are twitching really bad. Has anyone else experienced this? I am going to call my doc but I doubt he knows anything himself. He talked to Dr. Grubb a few weeks ago who recommended this so I dont think he knows anything personally but I will try. Is this something that will go away after awhile after my body gets used to it or is it a sign this is too much for my body?<{POST_SNAPBACK}> I took Mestinon for a week recently and had the EXACT same reaction. You could see my tounge twitching. IT was extremely uncomfortable well more annoying. I went to the ER because my tounge felt so thincka nd swollen and they told me that I was having an allregic reaction to the medicine. I would call and check to see if you were too. Vanderbilt stopped my meds immediately ( which i do not reccomend, taper off!) and they said they will start them back next week maybe to see if it happens again. Isn't it the weirdest feeling ever?Be careful, DO you happen to have Mast Cell with your pots? Some people I have spoken with have had this reaction and they too have mast cell. Think that has anythng to do with it?Lndsay Quote Link to comment Share on other sites More sharing options...
Alicia479 Posted July 19, 2005 Author Report Share Posted July 19, 2005 Thanks everyone. I called my cardiologist's office but he was out of town so they asked a different cardiologist who of course had never heard of this being prescribed for POTS so he talked to a neurologist. The neurologist (sorry if this is getting confusing) said that he has had patients with MG have this problem with the time release tablets because they sometime release a lot at once and then slowly release more to keep the levels stable. He thinks it was just too much for my body so I will try the lower dose again once my body is back to normal. It is interesting because I guess they have something that takes it out of your body at the ER if the symptoms get too bad but I am trying to "suffer" through it. But we will see. I think it is getting better, I dont sound as funny when I talk so who knows. Melissa- Thanks that is interesting. I am going to talk to my doc when he gets back and hopefully stay at a lower dose.Linsay- There is a lot of question about whether I have mast cell. My urine levels were high but intestinal biopsies were fine so the doctor at the mayo said he was not going to pursue further at this point. I have anaphalaxis to meds though so it is possible its related. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted July 19, 2005 Report Share Posted July 19, 2005 alicia - i'm glad you got through to a doc who at least had some familiarity with the med if not why you're taking it. i hope you start to feel better soon!dayna - re: passing out on the mestinon, i actually did just that during the drug trial at vanderbilt. out cold when solely on the mestinon, worse than with nothing in fact. i also blacked out on the beta blocker, also worse than with nothing in some ways (not as tachy but then out). for some reason though the combo did the trick. even better with midodrine too. so...don't dismiss that the mestinon could have brought on the black out. obviously you should talk with your doc before stopping anything but it is a possibility. hope you get to feeling better...:-)melissa Quote Link to comment Share on other sites More sharing options...
corina Posted July 19, 2005 Report Share Posted July 19, 2005 Alicia,I think we haven't "met" yet, so I wanted to say hi to you before answering your questions about the mestinon.I'm using mestinon for some time now and it wasn't a very huge step forwarth but it does help. I also had the twitching and the thick tongue and difficulty speaking. I think it might be the body having to adjust to it. When I'm increasing mestinon (which I do on a regular bases because my body gets used to it and it stops working than) I do that with tablets of 10mg. If they are available (I'm not in your country) you could talk to your doctor and ask him/her to try. I can't tolerate a 60 mg tablet at once, have to start with the 10mg. When I notice it works I stop increasing and stay at that level until I have to increase again.Hoping this makes sense because I'm having some brainfog.Best wishes,Corina Quote Link to comment Share on other sites More sharing options...
ariella Posted July 19, 2005 Report Share Posted July 19, 2005 About Mestinon:The other, original, use for mestinon is to treat neuromuscular disease, specifically myasthenia, which is a disease in which the muscles are severely weakened. I'm not sure exactly how it works, but it does stimulate something in the neuromuscular junction, which would probably explain weird muscular side effects. Quote Link to comment Share on other sites More sharing options...
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