Trach Posted January 13, 2012 Report Share Posted January 13, 2012 Are you having any headaches? Mestinon is the next drug on my list, but I am scared to try it. Every POTS drug I have tried (except beta blockers - bp crashed) caused awful migraines. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 14, 2012 Author Report Share Posted January 14, 2012 yeah I got headaches from a few meds but not with mestonin. Its very relaxing of the system but it makes you crash when it wears off a little. Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted January 14, 2012 Report Share Posted January 14, 2012 Man, I feel jipped! No relaxing side effect here - I could totally go for that! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 15, 2012 Author Report Share Posted January 15, 2012 I took it again yesterday and I fell asleep - i think its too sedating for me. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 15, 2012 Report Share Posted January 15, 2012 I took it again yesterday and I fell asleep - i think its too sedating for me.Have you tried the usual florinef and midodrine again?? I didnt like mestinon at all Quote Link to comment Share on other sites More sharing options...
McKenzie Posted January 17, 2012 Report Share Posted January 17, 2012 I just got a script for Mestinon today. Now that I've read this I'm not so sure I want to try it! Dr. Said to continue taking Midodrine. Hmmm, better break out some warm clothes! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 17, 2012 Report Share Posted January 17, 2012 I just got a script for Mestinon today. Now that I've read this I'm not so sure I want to try it! Dr. Said to continue taking Midodrine. Hmmm, better break out some warm clothes!dont go off of someone elses experience... some people do amazing on mestinon and its their miracle drug. we all react so differently to everything, and it could be a great drug for you Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 18, 2012 Author Report Share Posted January 18, 2012 update coming Quote Link to comment Share on other sites More sharing options...
McKenzie Posted January 18, 2012 Report Share Posted January 18, 2012 Thanks for your encouragement. From reading the posts on here, I see that my body reacts differently in many areas. Thank you for sharing your experiences. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted January 19, 2012 Report Share Posted January 19, 2012 I have used mestinon - started w/ the pills but really felt weird on them. switched to the liquid version (which I think they make for pediatrics) which allowed more precise dosing and I bulit up slowly to about 25/30mg 3x day. Since being on ivig I have not used it much but I did think it helped. But I did not like the pill version at all. Quote Link to comment Share on other sites More sharing options...
corina Posted January 19, 2012 Report Share Posted January 19, 2012 i've been on mestinon for years and did pretty well on it. though it didn't help me back on my feet again it did a great job regulating body temperature. where i was really really really cold before the mestinon i stayed warm when on it. for me the pills worked for about 3 hours (didn't have a lar version), if i forgot to take the next dosage i got cold again. i built up (slowly) to 120mg 3 times a day.i never got the sedated feeling you mentioned rama (as far as i remember ) and took stomach protecting meds to avoid any more problems (as mestinon is known to cause stomach problems and i had an ulcer before).dani is right, people react differently to meds so dont go off of others experiences! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 1, 2012 Author Report Share Posted March 1, 2012 I guess this thread was interesting because I was writing my initial results from mestonin. Once the side effects settled and they did quite quickly I would say that mestonin has helped in some ways. I have stuck to it for a long period now and Im glad that I did. More details when I get a chance. Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted November 13, 2012 Report Share Posted November 13, 2012 ...and took stomach protecting meds to avoid any more problems (as mestinon is known to cause stomach problems and i had an ulcer before).Hi Corina,do you mind me asking what worked for you re. 'stomach protecting meds'? Quote Link to comment Share on other sites More sharing options...
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