Lethargic Smiles Posted February 7, 2014 Report Share Posted February 7, 2014 That's a bummer about it no longer working on your fatigue when at first it did. You had to have felt really hopeful to have found some relief. I've noticed a similar thing with Adderall. It used to make me very energetic, now it just keeps me normal.. however I have to consider I am more ill than when I first start taking it, and I have more energy than I did when a year ago at my worst. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted February 8, 2014 Report Share Posted February 8, 2014 Hi Jackie,Yes. Very disappointing indeed. I will most likely be giving Modafinal a try in the near future. That's interesting about your Adderall and a disappointment to you I'm sure when you had realized greater benefit at the beginning then you are now. It's difficult to determine sometimes if a condition worsening or a medication tolerance is the problem. I'm always in search of a new plan of action to combat symptoms whether it be pharmaceutical or non-pharmaceutical.I hope you are still Mestinon side effect free today and realizing some benefit from taking it. I still have found it to be a very helpful medication. Janet Quote Link to comment Share on other sites More sharing options...
galatea Posted February 8, 2014 Report Share Posted February 8, 2014 Just an update on how I’m doing with the Mestinon so that there’s no false impression. Since I wrote my previous comment, it’s like I’ve ‘crashed’ in terms of fatigue. I feel like it kind of had an over-stimulant caffeine type effect and now I’m more tired than ever. I don’t think this is the drug for me long term! Glad to hear some of you have had more positive effects though.I was thinking about trying Modalfinil myself, but wouldn’t risk it as I’ve read how it can damage your sleep architecture and cause sleep disorders long term.http://www.theguardian.com/education/mortarboard/2013/may/31/is-modafinil-safe-in-long-term Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 8, 2014 Report Share Posted February 8, 2014 galatea, it certainly overstimulated me. To a point where it overwhelmed me. Blood pressure as high as 180/120. Everything was flipping out. I had all of my symptoms all at once times 400%. It took me on quite a ride. Within an hour of taking it. I did take it four times, and it varied in intensity. This was taking 150mg see how you tolerate it doses. I cannot help but wonder why. It helps a lot of people. I thought it might have been the right one for me. Quote Link to comment Share on other sites More sharing options...
corina Posted February 9, 2014 Report Share Posted February 9, 2014 gjensen, I know the feeling. When I first tried mestinon I had such very high hopes and though it did/does work for me it wasn't my miracle med. Keep searching, you will find what works for you! Quote Link to comment Share on other sites More sharing options...
~elizabeth~ Posted February 9, 2014 Report Share Posted February 9, 2014 Apart from paresthesias in throat and mouth, I didn't have a lot of side effect on 60mg a day, but since raising it to 120mg I've been feeling awful. My vertigo has been really disabling, plus my muscles appear to be getting weaker and worsening the EDS. Given that anticholinergic drugs are used to suppress vestibular problems, I'm not surprised it's worsened the vertigo, but I was sure it was actually helping my muscles at the start. I think in myasthenia gravis, too high a dose can actually worsen the neuromuscular problems, I don't know whether taking too high a dose can cause problems in people without MG. It has helped the hyperadrenergic symptoms a lot though, which was the worst aspect of POTS for me, so I'm reluctant to stop it altogether. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted February 10, 2014 Report Share Posted February 10, 2014 Mestinon made me deathly sick. I was tied to the toilet at both ends. I was also trying to conditioning with physical therapy when I was taking it. I was so embarrassed. I would be retching and hugging the commode, and I could feel the BP still tank and have to lay down immediately on the closest bench or floor before syncope. They'd always check the vital signs and oxygen level and they would make me stay til things came down to a certain level. Then they would want to call somebody to drive me home (when I drove my car in). My heart specialist finally took me off of it after about 3 months of it. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 11, 2014 Report Share Posted February 11, 2014 I'm ending my first week of 30mg twice a day. Tomorrow I will go up to 30mg 3x/daily. Basically, the improvement I've noted is my blood pressure doesn't decrease when I stand and I don't require as much Midodrine. I don't notice much of a difference in terms of my quality of life, but here is what I have noticed:At this dosage, I can take it on an empty stomach. Although I have trouble with nausea/vomiting and food intolerances, I've never been someone who has a sensitive stomach. I may feel a bit more "able" when I have my little bursts of energy throughout the day (usually 10-20 minutes twice a day), but I wouldn't say the energy bursts are more frequent or the consequences (post-exertion malaise) have changed.I experience no increase in GI motility at this dose.Although I'm not more tired during the day, I've been easily sleeping 10.5 hours at night if I'm not woken up and I could still sleep more. January 30, my grandpa who I am close with passed away, so that could be playing into things as well. Usually, I sleep right around 9-9.5 hours and only sleep 10 hours if I have a virus or didn't get enough sleep the prior few nights.My Midodrine and Propanolol dosing has been reduced by 25% without resulting in any changes in vitals.My blood pressure increases when I stand which has never been the case in the last few years. I'd need to take Midodrine so that when I stood, the drop wasn't significant enough to cause hypotension.Today, after my bath, my legs felt like Jello for an hour! I could walk, but it felt like my legs my just melt beneath me at any moment. This may not be unusual for some dysautonomiacs, but for me it is!I have familial POTS, hyperadrenergic POTS, orthostatic hypotension, and EDS-3. The familial POTS is likely just the fact EDS is genetic and predisposes people to POTS. Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 11, 2014 Report Share Posted February 11, 2014 Good for you so far. I had hoped that you would tolerate it well, and it would help. It increased my BP when I stood to. Just more than is generally considered safe, LOL. Quote Link to comment Share on other sites More sharing options...
Amy C. Posted May 22, 2017 Report Share Posted May 22, 2017 Hi does anyone have tinnitus from Mestinon? Or worsening tinnitus that was already present? Also, does Mestinon help regulate body temperature? I constantly feel hot even when it's cool. Quote Link to comment Share on other sites More sharing options...
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