Back From Dr.

[Aquadiva]

Well, after a very long day, we are done. What did we find out that we didn't know?? Not a whole lot other than her ttt results he said were actually worse than 2 years ago (and part of me feared that it would be normal!). Oh, and that she is doing a great job of sodium and fluid intake (per urine tests) and that is obviously NOT helping her symptoms much. So, the dr. tried to convince her to do a 3 day "study" of the mestinon but she didn't want to have to come back in 3 days. She did enroll in a 2 year study to try to help with prognosis. Her catecholamine test results were not back yet, but I'm not sure what that is really going to tell us or how it would impact treatment. I will ask that when we get the results.

In the meantime, we are going to try Mestinon and see if that helps her fatigue and concentration as well as continue on the metoprolol (which we found out really is helping after being off for 4 days. I am cautiously optimisitc, but more than anything happy to at least be able to try SOMETHING!!

For those of you who tried or are on Mestinon, how long before you noticed an improvement or that it wasn't working or had bad side effects?

Thanks!

[Simmy]

Mestinon was added to my regimen in February. It's supposed to boost blood pressure, specifically when I stand up, and it does, but about two days after increasing my initial dosage from 30mg x2 to 60mg x2 the side effects also started. I continued the plan and two weeks later increased it to 60mg x3, but had to cut back to 60mg x2, which is still more than I can tolerate.

I've experienced times when it has kicked in about an hour after taking it that, when standing up, instead of my heartrate going from 60 to 120 and staying there, it still hits 120 but then slowly drops, sometimes even into the 80's while still standing, before creeping back up. Too bad it doesn't also stop the headache and dizziness.

The worst side effect I have with it is nausea and abdominal cramping, especially when I stand, and crippling cramping if I'm standing for more than five minutes or from overexertion. When I took it three times a day the nausea was nearly nonstop.

For me the scale is beginning to tip towards the 'it's not worth it' side, but many others have had great success with Mestinon. My bad reactions to it might just be me, or a combination of it with too much Midodrine. I'm still trying to adjust the dosages.

[iheartcats]

I am on Mestinon 30mg two times a day; I think it helps me a bit with brain fog and muscle pain. I've tried 60mg two times a day and it works sometimes, but recently it was too much so I'm back to 30mg.

My worst side effect was...I had to go to the bathroom a lot for the first week. But, it did subside thank goodness and now I think helps somewhat with 'regulation.'

[Aquadiva]

My daughter is on the Timespan version, so it is just once a day. She took it at 6 pm last night and the only complaint from her 2-3 hours later was that she was really hot. Her skin was very warm to the touch but she wasn't feverish. Not sure if it had anything to do with the Mestinon or not. The dr. did say that this formulation had fewer side effects such as nausea. She took her dose with food to hopefully help with that as well.

Cat Lady, you mention that it seems to help with muscle pain. What kind of muscle pain have you experienced? My daughter has a lot of aches and pains. The one that we feel is really related to POTS is neck pain. It would be wonderful if it would help that and then maybe also her headaches too. And, if it can help with brainfog, that is one of her biggest complaints.

I REALLY hope this drug helps her!!

[kayjay]

I hope that it is helpful for your daughter. I took it for just over a month and could not stay out of the bathroom. I did not notice if it helped in other ways because it made me so sick.

[Aquadiva]

I hope that it is helpful for your daughter. I took it for just over a month and could not stay out of the bathroom. I did not notice if it helped in other ways because it made me so sick.

Thanks for your response. That is a concern of mine as she already has inflammatory bowel disease and I hate to see anything upset that. Can you tell me, were you on the multi-dose per day such as 60 mg or the once a day Timespan? The dr. said that the Timespan has been much more gentle on the gi system. She isn't up yet this morning to see how she fared during the night. I sure hope she wasn't up all night from it.

[kayjay]

I took 1/2 of the non-time span dose 2x's a day.

[mynagirl]

I have to say, I think you'd need to try it for more than a few days. It took me a while to get into a rhythm with it.

I'm waiting to get back on Mestinon after pregnancy and breastfeeding. Yes, the digestive side effects are brutal (I have IBS, so constipation was NEVER my problem anyway). On the other hand, my dry eyes disappeared - I could wear contacts comfortably again! The bowel side effects did subside somewhat after a while but eventually I got on some meds to calm the digestive issues.

Ultimately it was worth it for me. It made me feel a lot better. I wish I could be on it now!!

[Aquadiva]

I have to say, I think you'd need to try it for more than a few days. It took me a while to get into a rhythm with it.

I'm waiting to get back on Mestinon after pregnancy and breastfeeding. Yes, the digestive side effects are brutal (I have IBS, so constipation was NEVER my problem anyway). On the other hand, my dry eyes disappeared - I could wear contacts comfortably again! The bowel side effects did subside somewhat after a while but eventually I got on some meds to calm the digestive issues.

Ultimately it was worth it for me. It made me feel a lot better. I wish I could be on it now!!

Glad to hear you had good results--for the most part. Were you on the regular tablets or the Timespan? It seems everyone has been on the regular and I haven't heard from anyone on the Timespan.

[mynagirl]

I was just on the regular, sorry no Timespan experience here. But now that I've heard of Timespan I'm gonna ask for that one next!!

[iheartcats]

I have these odd joint/muscle pains that must be like what people with Autoimmune/CFS feel from what I understand. They wax and wane (no matter if I exercise or not, or eat Gluten or not, etc). So I think it is POTS!

Anyway, the Mestinon relieves some of this. They vary over my body (legs/arms/side mostly)...but they are less with Mestinon. Let's hope it helps your daughter. Even a 50% improvement is great!

[Tachy Phlegming]

It tends to regulate my bowel problems and I was quite sure that it would before taking it -- based on the medical research out there. Mine were getting very severe and I believe headed toward UC (frequency, urgency, some pain, skin changes).

My guess is that the people who have stomach problems with this had (as of the time of taking it) normal bowel function (or a different kind of problem) to begin with.

[ramakentesh]

have any of you guys noticed a crash of symptoms when you've weened off mestonin?

[spaceorca]

Mestinon has been the drug that helped my son the most. He started with a very low dose, just 1/4 of the 60 mg pills taken 4 times a day and worked up to 180 mg total (2 full pills and 2 halves, spread over the day). He has severe Crohn's Disease and gastroparesis along with POTS and, as another patient mentioned, the Mestinon actually helps with his GI symptoms. In fact, it probably has been more important in maintaining motility than in its other effects.

We have found that timed release pills don't work well for my son (probably because the slowed gastric motility and prior intestinal surgery affect the way he absorbs meds) so he's never tried the timed version of mestinon. One advantage of the regular form is that you can start with very small doses, work up, and adjust the dosage as your symptoms shift. Periodically my son will add or subtract a little mestinon depending on how his body seems to be reacting. But if the timed release works for your daughter, that may be a good option as well.

Oh, on neck pain: for many people with autonomic disorders, this is a blood vessel/autonomic problem--something about how the body is trying to get more blood to the brain. I read somewhere that putting a cold gel pack (or bag of frozen peas!) on the base of the neck or shoulders can help, because it constricts those blood vessels. That worked wonderfully for my son. He doesn't get the neck pain often but, when he does, the cold pack works very well.

[Steve]

Mestinon was added to my regimen in February. It's supposed to boost blood pressure, specifically when I stand up, and it does, but about two days after increasing my initial dosage from 30mg x2 to 60mg x2 the side effects also started. I continued the plan and two weeks later increased it to 60mg x3, but had to cut back to 60mg x2, which is still more than I can tolerate.

I've experienced times when it has kicked in about an hour after taking it that, when standing up, instead of my heartrate going from 60 to 120 and staying there, it still hits 120 but then slowly drops, sometimes even into the 80's while still standing, before creeping back up. Too bad it doesn't also stop the headache and dizziness.

Are you the guy who posted this video? Just saw it the other day while googling Mestinon.

[ashleighheath]

My experience with Mestinon has been extremely positive. Currently I take 60 mg 3x/day. I have tried the timespan and very much liked that. For cost reasons, I use the short-acting. I can literally tell when I need to re-dose. When I first started taking the Mestinon it was very evident. It was like someone took the battery out of me. In fact, initially my dosing started to run out about 30 minutes prior to my next dose.

When first taking the medication, for several months I had side effects associated with the medications, including a couple of episodes of severe muscle twitching. But all of that got better over time. This is the one medication that yields measurable effects. (My midodrine only works if I'm taking the Mestinon. And I'm still not convinced a beta-blocker will ever help me. I keep trying them.)

As for GI issues, if you have POTS-associated constipation, it's a probably a good choice. For those with POTS-associated loose bowels, probably not a good choice. Especially in the initial stages. After being on the meds for almost two years now, GI side effects are a non issue.

The literature remarks that Mestinon tends to be more effective for those POTS patients with excessive sympathetic activity. (i.e. fight-or-flight response). I find this to be personally true.

Best to you!