Starting Mestinon And In Patient Rehab

[Becia]

whirlwind of stuff going on. I was released from the hospital yesterday, into a inpatient rehabilitation progam to work on my hips issues as well as further recouping of energy from this crazy crash. Its at a local nursing home, so I'm a bit freaked there, but I have a sweet older lady for a roommate who was so excited I was paired with her, and we keep each other laughing. Being the youngest patient isn't easy, and having the invisibility of POTS on top has led to a lot of educational moments. I'm also the envy of the ward because of the extra salt order, lol. Trying to settle in and make the best of it.

today though, I saw a new ep guy at OSU, per the request of my cardio dude. While this guy was really hard to get, he did give me a script for mestinon. I know several here use it, what are your thoughts? Meds and me are crazy, so I'm naturally scared. He sis recommend a new pacemaker that monitors breathing, and then adjusts the heart to fit the rate, thus slowing down the tachy, but for me to do that, I would have to have major dental work and get rid of my picc to reduce risk of infection. I seriously think the fluids and picc are the reason I've done so much better with a few aspects lately. I can work on eating real food without being sick on fluids. The sodium and electrolytes are being better absorbed this way. Yeah, I'm in a pretty severe crash,just one of many, but I managed to avoid the hospital far longer than before. Given my stomach and its issues, I'm very hesitant to five this up right now.

trying to weigh pros and cons. There was a lot of information thrown at me today. It sounds really good but again, what's the fall out? Still gonna need so much sodium that I will be dehydrated from vomiting.

he upped that to 10mg from my 3-5 I struggle with.but that seems to be my big issue now, my heart racing, no oxygen, and passing out and waking with injuries.

[looneymom]

Hi Becia

Sounds like you have a lot going on. I don't know anything about the Mestion but Tyler's doctor would not try him on this medication because it would make his condition worse. It had something to do with what was found in his blood work at the time. Just wish I could remember what the reasoning was. Are you close to home? Can your friends check in on you? Hope everything goes well and keep us posted on your treatment.

[Katybug]

Good luck with the current process! I love the older crowd....always good for history lessons and a good laugh.

Do you have one doc that is coordinating care with the other specialists? Your situation seems too extreme to not have a doc running point and helping to sort out the priorities and what options will be most effective.

[Tachy Phlegming]

Can you ask to try it at a low dose at first? Like 15 mg.? You may be able to tell something even from that. Usually they will start you at 30 once or twice a day and then go up to 60 twice or three times a day. You can have trouble with a ton of other meds and not that one. Especially if you're scared but plan to try it, you might want to try it during a "good" hour (I think most people on here would prefer to try meds when they feel slightly better rather than worse if that is an option).

[jknh9]

I started at 30 mg once a day and felt pretty nauseous the first week. I'm doing 60 mg/day now. It seems to help a tiny bit, but it hasn't been a "miracle drug" for me. I'm also on Zoloft (50 mg) and Wellutrin (37.5 mg).

Best of luck. Sounds like you're dealing with a lot now!

[Becia]

I guess I'm wondering what is the goal for this drug with me, as the way he worded it doesn't make sense. He prescribed it because Dr Grubb prescribes it, but didn't explain the goal for use. Like our florinef is to retain fluids, our midodrine is to raise Bp, beta blockers to alleviate tachycardia and /or high Bp. What is our intent for using this, because I hate taking something without knowing I need to look for whatever effect. I guess its a self monitoring thing. I'm talking to the med doc here as well as my cardio dude, because they are the ones following me on this, and I value their opinions and thoughts.

my gp seems to be my go to for everything, and he stays in contact with specialists. Kinda a weird deal, bur he seems to get more done than any other does. Being here at the rehab, I will have a new doctor, bjr everyone has been researching my condition, and having fresh eyes may help. Everyone wants to get me to a specialist, but right now, that's not an option, and the specialist I have seen, just sent me back with no more help or ideas, so here we are.

I'm close to home, right down from family and friends, so at least I am local. Today is my first full day here, so its been busy but hoping to get really settled, figure out exactly I need and want around me. My dads and nephew stopped by earlier, one of my minister friends is visiting later. And bonus, my friends brought sushi a couple days ago. Just lonely being this young in such a different place. And with no internet, lol. I'm such a tech geek, I have my nook, iPad and computer here, when most have pen and paper.

[Becia]

and this dude yesterday started me on 60mg twice a day, just full fledged.

[arizona girl]

Hi becia,

Glad to hear you are in a better place and out of the hands of that hospitalist. After what happened to a fellow forum member, it raises red flags to me when they say the kind of things that doctor was saying to you.

That dose does sound like a high starting, do you have control over how much of it you take. Most docs are good about letting one tirate up. You always sound cheery even when things are very difficult. I think you are inspiring and you lift the rest of us up with your fortitude. I wish well sooner rather then later.

[Tachy Phlegming]

The goal is to lower tachycardia at least. It's given off-label for that. My sense is that it can have the effect of evening out labile blood pressure (although the literature I think only says that it's supposed not to get too low on Mestinon). If you have problems with being too hot or cold, some of us would tell you it helps either with the temperature regulation or with the symptoms we get from being too hot or cold. It can help with breathing ...

I needed it. I don't think I necessarily would have known I needed it just from reading. I really would not have wanted to go straight to 60 mg a day because I had so many problems with other meds -- (but had I actually been forced to take it that way, it would not have been the disaster almost every other drug I had tried recently had been).

[westernmass]

I was really hopeful about Mestinon, and did a month trial this summer. It's a month I feel like I lose from my life, LOL! I had pretty severe side effects from it, and didn't see any improvements in anything. I've heard about people doing well on it so had high hopes. Good luck!! I did 15 mg twice a day and went up to 30mg twice a day before tapering back down and off it.

[Macca]

Hi Becia

The link below provides a quick summary on Mestinon for POTS - how they think it works and it's benefits.

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38923

I found Mestinon really useful. Improved my stamina, fatigue, reduced dizziness & reduced tachycardia and hyped up feeling. It improved my ability to stand for longer, but it's not as good as Midodrine in that regard.

I started on 60mg, but it was too much so dialled back to 10mg and built up and found 30mg just right. Took me a couple of weeks to get used to it, but I found side effects very manageable.

Good luck!

[nomdeguerre0850]

I tried mestinon for about 2 months and had high hopes. It didn't seem to help me at all, but neither did it give me any side effects. I tried it by itself as well as with florinef. It seems we have very individual experiences with meds, and it ends up being a "try it and see" if it helps the symptoms.

Wouldn't it be lovely to get something that actually cured and didn't just treat symptoms. But I'll take whatever help be to function a bit better. IV saline, midodrine, and buproprion have each helped me a lot.

[Becia]

I'm on midodrine, florinef, and IV saline for mine. They just now realized my potassium is non existant, and have me on a suppliment. Sometimes they can't even manage my symptoms effectively, just depends on how my body is gonna react. After all this time, I have just figured out how I can manage the side effects of everything, I'm scared of throwing some curveball my way, and not being able to manage. Getting my local cardio on board before I try the mestinon, just in case, because they are gonna be the people managing my care at the recommendations of this outside specialist.

meanwhile, rehab is foing ok. Exhausting, but ok.

[looneymom]

Hang in there Becia. Do you know how long you will be staying? Just keep a tight rein on your doctors and communicate with them.

[hholmes13]

Hang in there! Mestinon has been fantastic for me. I started with 30mg (half a pill) 2x a day. I slowly added another half a pill each week until I made it up to 60mg (1 pill) 2x a day. I am allowed to take it 3x, but I don't need it. I like to keep my doses of meds as low as possible to avoid any side effects.

Some people get really sick with Mestinon. I was nervous because I have a very sensitive stomach. However, I had no issues. Only thing I experienced in the beginning was muscle spasms, but they stopped after a few weeks. (Makes sense since it is a cholinesterase inhibitor)

It took about 6 weeks to really start working for me, but it gave me my life back. As a side...I am also on 10mg of midodrine up to 3x a day. This combo worked great for me. I hope things work out for you. It sounds like you have been have a really rough time lately.

[Becia]

currently, looks like a minimum of a month, but they are also working on getting me a bit more independent, and also getting me my own place, and my insurance, depending on the certification they submit, I may be here longer. The more I read about the mestinon , the more I want to try it, thank you everyone for your opinions and experiences.

my doctor here is keeping my usual gp in the loop, and am working on my specialists involved too. I see am orthopedic guy on Monday to evaluate my hips and joints.

I am still apprehensive about every thing that is going on. Its a bit stressful, but talking with my friends, if j need to go back there after this is done, they want mw there, but right now is just trying to fix me. Get me ready to live again.

just ready for a break. I'm noticing the littlest things are exhausting to me. I played two games of bingo today with the residents, and spent the rest of the time kn bed. I truly am back to the beginning again. And in the midst of this, I am looking at having major dental work, because from my seizures and falls, I've broken teeth that were already bad. If I chose the pacemaker down the road, I have to eliminate any chance of infection, and I admit my teeth are horrible, no matter what I do. When better to do this than now when I know I will crash, and they can help me rebound with help now.

[corina]

Sending good thoughts Becia, you have so much going on. I think you're in the right place for now and really hope that from there you'll be able to work yourself up. Take it one step at a time okay?!

[Psalm 23]

Hi Becia,

I'm so sorry for all that you are going through. I can't imagine the difficulties you go through. Your perseverance is truly inspiring. I hope that you realize some benefit from taking Mestinon. I was started at 30mg three times a day which was then increased to 60mg three times a day two weeks later. I have been on it now for three years and have found it to be extremely helpful in terms of decreasing tachycardia and generally helping with OI symptoms. Hang in there.

Janet

[Becia]

its crazy, that's for sure. Today I met with an orthopedic doctor, who thinks I may have torn cartilage in my hips, and also is suspecting a connective tissue disorder with why I can't heal properly. Being sent for genetics testing, looking for anything, such as EDS, before we consider surgery to fix and stabilize, because if there is a connective tissue issue, surgery is most likely poor outcome because in time, the joints and such will continue to let things sublex.

waiting foe that call, but trying to continue physical therapy for any benefit I can find, which is so far I still need a lot of assistance and adaptive devices. Stood for 15 seconds before my Bp plummeted, and so did I.

[Appleblossoms]

I take 120mg mestinon 3x a day. It has been a "miracle drug" for me that has given me my life back.

I did have muscle spasms in the beginning. And I did start at a much lower dose, 30mg twice a day up to where I am now.