I Was Just Given Mestinon -- Is That A Common Treatment?

[lynnie22]

Went to my pots doctor who gave me a prescription for mestinon. It is used for myasthenia gravis and increasing muscle strength. It is true that I am very tired and deconditioned. He said it would up my bp as well. Has anyone been treated with this?

[VetteSage]

I know that we aren't supposed to give medical advice, but if I understood the rules correctly we are allowed to share our own experience with specific medications.

I was treated with gabapentin and mestinon ... When I'd take them I would shake (like cold shivers) for hours, got dizzy, actually felt weaker, and the hospital pulled me off after stating that they were close to damaging my kidneys.

However, I was informed by a different doctor that these two medicines, either separate or together, are "basic" starting points for dysautonomia. So, they are used.

Hopefully that helps a little bit. I hope that it works well for you as I've heard it can in some cases (but that's just what I found online).

[Guest Alex]

I've been on mestinon for over a year now - up until recently I took it in combination with propranolol, klonopin and florinef, but now it's my only med. To the best of my knowledge it's quite commonly used in POTS even if my specialist didn't think I would benefit from it.

I don't think it increases my BP much, but it helps lowering my standing HR some. Also, in the beginning it used to help with my energy level (back then my energy level was pretty low, but I blame the klonopin and the propranolol for that as well). For me it was/is the only off label POTS med that I've tried so far doesn't come with side effects I cannot tolerate.

If you search the forum you will find many posts on mestinon.

I hope you'll find it helpful.

Best,

Alex

[lynnie22]

Thanks for your replies. I will search for posts on mestinon, Alex. Sorry about your experience Vettesage. Although I am not new to POTS, I couldn't find a doctor to treat me for the last two and a half years. But it wasn't as bad back then as it is becoming lately, so I'm pretty new to knowing much about the treatments. I don't know why things seem to be getting so much worse the last few months, and I sometimes feel so frustrated and scared, just because everything seems to be happening at once. But I'm glad to have found you all.

[looneymom]

Lynnie22, Keep us posted on how you do with this medicine. It is very frustrating trying to find medicines that will work for your medical condition. A symptom that my son had last summer went away and now has come back since he had the flu. Thought the symptom was related to heat intolerance but it seems to be a true POTS symptom for him. Sorry that symptoms seem to getting worse but keep track of them and let your doctor know. Doctors can't help with treatment unless they know what is going on. It can be very scary but don't give up on finding a treatment that can help you function better.

[Tachy Phlegming]

I do very well on that med.

I get some sense that they could do better and more exhaustive testing for whether someone needs it but I also get a sense that some of the testing would give false negative results -- so there are reasons to just try it.

I wonder if meds which do the opposite (they exist) would help you VetteSage. Sometimes, some of the people on here have been given those (often a bad experience but there are nonetheless times when those should be tried). Nobody tried to figure out why Mestinon (assuming it wasn't Gabapentin) made you weaker?

Did they say anything about why the meds may have come close to shutting down your kidneys?

[Guest Alex]

Here you have some research articles on mestinon (pyridostigmine) as well

Pyridostigmine in the treatment of postural orthostatic tachycardia: a single-center experience.

http://www.stars-us.org/files/file/Mestinon%20UT%20final.pdf

Pharmacokinetics of Pyridostigmine in a Child With Postural Tachycardia Syndrome.

http://pediatrics.aappublications.org/content/118/5/e1563.full

Comparative efficacy of yohimbine against pyridostigmine for the treatment of orthostatic hypotension in autonomic failure http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2959129/

Alex

[Rachel Cox]

Hiya, I'm on mestinon and love it. Combined with midodrine it is working a treat for me. All the best with your mestinon journey :-)

(Incidentally, I found it most helpful for the GI issues, do you suffer with these?)

[Charlotte1]

I've had so much relief with my POTs symptoms once Mestinon was added to my regimen in February. (180mg Slow Release 1x/day). I'm also taking .1 florinef @ morning and 50 mg lyrica morning and night as a pain prophylactic and domperidone for bowel motility issues.

I'm usually symptom free first thing in the morning but for some reason after about 45 min of being up and around in the house,I start to feel the heaviness in my legs, soon followed by brain fog. I don't know if this is from blood pooling or something else going on but my 'magic' compression socks aren't helping anymore and I'm not sure how helpful the florinef/salt/H20 is anymore either.

.After reading posts on how ativan has helped some pts symptoms, I've started taking .5 mg 3x day and its been very helpful at keeping both my energy level up and my brain fog down . I don't understand how that can be since ativan (lorazapam) its basically a tranquilizer! Shouldn't I have less energy? Anyway, without it, my legs begin to weaken and I'll get a full out crash (incoherent speech/fullness in head/cannot think/focus if I don't lie down within minutes of those first symptoms. So although the Mestinon has helped, its only been to a certain point. I will definitely stay on the Mestinon but if possible, I would like to replace the ativan with something else.

Giraffe - I see you take mitodrine. If I take Mestinon daily, can midodrine be added PRN? What is your doseage and how often, if I can ask u that? Perhaps the vasoconstriction (lack of) is not being addressed properly and that's my issue?. Florinef raised my blood pressure but I didn't FEEL much different on it. Midodrine daily has to be better than taking benzos daily, right (I'm not anxious but they work anyway somehow???!)

Thanks!

[ramakentesh]

Mestinon is ok. While it boosts parasympathetic activity it also enhances vasoconstriction and I had no side effects

[LMG]

Does Mestinon affect heart rate- lower or raise it? And BP? Or do you just feel better/stronger on it?

[Charlotte1]

LMG - My chronic low blood pressure has been raised which I've attributed that to the florinef but perhaps mestinon is playing a role there. As for heart rate, DIY tilt test shows I rarely reach an increase of 30 bpm upon standing anymore which I definitely attribute to the Mestinon. i didn't start to feel better until being on Mestinon for a few weeks despite being on florinef 4 months prior. I was told Mestinon works as a messenger between the brain and the nervous system so perhaps the reason for feeling better is b/c of what Ramakentesh said, it boosts the parasympathetic activity. But I'm not so sure its working on vasoconstriction for me and am thinking Midodrine might help for that.

Anybody using Midodrine on a 'as needed basis'? Dosage?

[Guest Alex]

Does Mestinon affect heart rate- lower or raise it? And BP? Or do you just feel better/stronger on it?

For me it lowers my HR (but in a random pattern - sometimes all the way down to high 40's, other times only to 80's - wish I had an explanation for this).

The BP -not sure in my case. It's supposed to boost one's standing BP and give you some extra energy.

Alex

[lynnie22]

Well generally the mestinon sounds good for most of you. Good to hear Rama that it has few side effects. As I mention in another post, I have had reactions to everything lately, even vitamins.

[Rachel Cox]

Charlotte, for me florinef was worse than useless. I have never hated a medication so much. But midodrine made an immediate difference to my peripheral blood flow. Midodrine and Mestinon can be given in conjunction. I have a very cautious doctor, he took some time to research and decide but felt the two together would be beneficial. So far so good! This week I taught again for the first time in seven months. It was certainly trial-by-fire as I was given a year One class for the morning. Oh my. I managed and I have to attribute that to the meds!

[Charlotte1]

@ Rachel - I will try and get one of my specialists to give me a trial month of midodrine to be taken as needed. I'm thinking likely I would take it in the morning and early afternoon when I have most of my trouble. I'm not sure if he'll want me to first decrease the florinef so as too not have too high a blood pressure. The florinef has brought my pressure from systolic being 80-90's to now 110-120, something I have never experienced before! Although not nearly as bad, I still have cognitive impairment and 'lead legs' come on suddenly late mornings and early afternoons.) First thing out of bed I'm fine, unlike the early days of POTS.

So, I need to try a new med and the midodrine seems a logical choice given your experience. Hopefully the specialist will prescribe it and also hoping it does not give me any nasty side effects. Thanks!

[Guest Alex]

Charlotte,

the main concern with midodrine is the supine hypertension.

So when taking midodrine you have to make sure that you're not planning on lying down/taking a nap in the 3-4 hours after your dose or you risk getting pretty high BP numbers. (I learned it the hard way - when it was prescribed to me the dr and the pharmacist 'forgot' to mention this tiny detail). I stopped midodrine though about 1 month after starting it. It used to increase my BP to levels that were uncomfortable for me, but perfectly normal for someone else.

Hope you'll find it helpful.

Alex

[Guest Alex]

Charlotte, for me florinef was worse than useless. I have never hated a medication so much. But midodrine made an immediate difference to my peripheral blood flow. Midodrine and Mestinon can be given in conjunction. I have a very cautious doctor, he took some time to research and decide but felt the two together would be beneficial. So far so good! This week I taught again for the first time in seven months. It was certainly trial-by-fire as I was given a year One class for the morning. Oh my. I managed and I have to attribute that to the meds!

Rachel that's awesome! So happy for you! Yay!

Alex

[Charlotte1]

Alex and Charlotte, thank-you for replying.

Another question - if my blood pressure is already in the normal range (with the help of florinef) would midodrine really be of any more help to me? The mestinon has helped with the neurotransmission issue (and that's where I saw my biggest improvement in symptoms), and the florinef has helped raised my blood pressure into a normal range. Wouldn't the midodrine just be duplicating what florinef is already doing... raising my very low blood pressure to respectable levels?

I know that florinef increases blood volume (I was never tested for that, it was just assumed) and therefore blood pressure rises and midodrine is an actual vasoconstrictor which gives the same end result.... raised blood pressure. But since I'm already getting that with the florinef, do you think that there is still reason to try the midodrine? Is there perhaps another medication I should be trying? I'm sure I'm missing something...can someone explain? Thanks

[Guest Alex]

So Charlotte,

If you're already getting the BP boost you need from the florinef, why would you want to add one more med to the mix? Any particular symptom you're struggling with that you hope the midodrine will help with? I'm not sure I understand why you say you should be trying another med...

I was on both midodrine and florinef for less than 1 week and my BP got dangerously high. That's when I dropped the midodrine. I later dropped the florinef as well (didn't help lowering my HR, and I had many side effects from it).

Alex

[Charlotte1]

@ Alex, Sorry for any confusion. Although the mestinon and florineff together have helped immensely (no longer bed/house bound), two months ago I periodically began experiencing a few of my earlier POTS symptoms,mainly cognitive impairment and 'lead legs'. Unfortunately, now they are happening daily and I fear that perhaps soon some of my other horrid symtpoms will come back (tachycardia, slurred speech, collapsing etc).

Strangely, the 'brain fog/lead legs symptoms don't happen first thing in the morning like they originally did. Instead, they usually come on after being out of bed about 45 minutes each morning or occasionally it'll not happen until the early afternoon. I've kept activity/food journals but I see no connection to when these symptoms occur. I check my blood pressure and sugar when this happens and they are normal. I've never had visible signs of blood pooling so not sure if that's whats happening although wearing the compression socks and/or abdominal binder makes no difference that I'm aware of (earlier on it did).

Although I'm so much better than I was, these symptoms still dictate my day's activities. I cannot plan for anything b/c the 'head fullness feeling, duh like brain fog' and heavy, weak legs can occur with very little warning. I'm already on a 180mg SR tab mestinon with breakfast and I don't know if more than that is typically prescribed/ day? Increasing the florinef is out b/c I'll get more headaches.(tried that)

So, what I meant to be asking is - Would adding midodrine to the two drugs that are working relatively well for me be a good choice to request? I understand that it might cause my BP to be too high but what if I just took a small dose (2.5 mg) 1st thing in the morning to see if it can help with the blood flow to the head and lower legs? Or, in your opinion would another POTS drug be more helpful for those particular symptoms that I've mentioned?

I greatly appreciate if anyone can offer some suggestions,

Charlotte

This thread interested me b/c of the mention of Mestinon. Sorry, I didn't mean to hi-jack it with my queries.

[Guest Alex]

Charlotte,

I am not sure what to advise you (plus we're not even allowed to give medical advice on dinet). A lot of people report an improvement in the sx you're mentioning with mestinon. You seem to be on a quite high dose of that (I'm taking 1/3 of what you are and at the highest I took 90 mg a day but the side effects made me cut back on my dose).

In my experience, midodrine didn't help with my fatigue or weakness or brain fog. Based on what I've read about midodrine, it's highly unlikely that it might help you with those issues. Midodrine increases one's vascular tone and elevates the blood pressure, but (I hope I'm not mistaken) it doesn't cross the blood-brain barrier so it has no effects associated with the central nervous system. Also keep in mind that it has an extremely short half life 3-4 hrs (therefore those benefiting from it take it in several doses throughout the day). I used to take 3 doses at 4 hrs apart. So if you're looking for long term benefits from it, you'd need more than one tiny AM dose.

Another thing - ever considered the possibility that you're dealing with mestinon side effects - maybe 180 mg is too much for you (when I was on a higher dose of mestinon I complained about muscle weakness quite often) - not sure if the timespan version of the pill is the same as the regular one though

Have you been tested for any vitamin deficiencies? Maybe the answer you're looking for is there.

An idea: if you'd like to get a more individualized response to this question/concern of yours, you might consider starting a new thread.

Bottom line: personally I don't think adding midodrine would help with those symptoms. What other POTS meds might help with that? No clue.

Best,

Alex

[lynnie22]

it's been so interesting to read and learn all of this. Alex, my POTS doctor told me the mestinon would not affect me at all unless I stood so am confused about the supine hypertension. He was mainly concerned about improving my tone and energy and boosting my bp a little as well as lowering my hr standing.

[Guest Alex]

Lynnie,

that's midodrine, not mestinon that can increase your supine BP.

Alex

[ramakentesh]

There are other press or agents that usually pose less side effects like dihydroergotamine and phenylephrine but these really boost blood pressure to help with dizziness and for me also energy. I'm not sure they would help with 'lead legs'.

one doc used to treat brain fog with low dose calcium channel blockers but that was experimental. My personal favorite brain fig buster is licorice tea but caution as it combines with florinef.