Does Mestinon Affect Your Breathing?

[Guest Alex]

I've been on mestinon for a bit over a year now - started at 90 mg a day (45+30+15) now I'm down to 60 mg a day (30+30) and that seems to keep my tachycardia under control, knock on wood. I used to be on a cocktail of meds, but I've eliminated them one by one and I'm glad I did (a lot of my so called POTS symptoms turned to be meds side effects).

Now, most of the side effects I used to get from the mestinon are gone (no more GI upset, no more excessive sweating, my esophageal cramps are history and so o ). I still get extra sweaty, at times my muscles twitch, my eyes are watery and sometimes blurry after my doses but nothing major. What I've noticed though is that my breathing is funny. I'm not short of breath, my breathing is not labored, I'm not hyperventilating, I don't turn blue, but I feel as if my lungs have a hard time expanding and contracting - particularly upon waking up in the morning. It's even painful to breathe. Sometimes it feels like something (like a tight band) is squeezing my lungs. I get a similar feeling from the mestinon in my esophagus at times, that's why I'm thinking side effect. But then again, I'd think that the side effects should manifest themselves shortly after I take the pills, rather than upon waking up before taking them.

Could it actually be a POTS symptom that the mestinon is helping with?

Is anyone else dealing with this?

I mentioned this to my POTS dr at the beginning of the year and he brushed it off. He said that as long as i don't turn blue, my oxygen levels are fine so I shouldn't worry.

Looking for some input from you guys.

Thanks,

Alex

[Dizzysillyak]

I feel as if my lungs have a hard time expanding and contracting - particularly upon waking up in the morning. It's even painful to breathe. Sometimes it feels like something (like a tight band) is squeezing my lungs. I get a similar feeling from the mestinon in my esophagus at times, that's why I'm thinking side effect.

You're describing one of my allergy symptoms. Taking Benadryl helps me within 20 - 30 minutes. You may want to try taking Benadryl to see if you respond. I only need 12.5 - 25 mg to stop this but you can take more if needed.

My allergist gave me an inhaler but it lowers my seizure threshold so I never use it. hth ... d

[Guest Alex]

I'll give it a try dizzy, thanks for the tip.

Alex

[Psalm 23]

Hi Alex,

I have noticed an increasing problem with some of what you describe but also an increasing problem with shortness of breath as well as other symptoms ( I do not have asthma). I have been on mestinon 60mg tid for about 20 months. I don't think my problems are related to taking mestinon though. I am however wondering about MCAS as being the possible source for some of my problems. That would kind of tie in with Dizzysillyac's suggestion of allergies as being a possible cause for what you describe. I hope you find some relief soon.

Janet

[Guest Alex]

Thanks Janet,

I've read a few articles on MCAS and I really have none of the issues associated with that, but I will definitely mention this to my dr (again) and see what he thinks. I will try benadryl next time I get that breathing problem and see what happens.

Alex

[Dizzysillyak]

I don't know if I have mcas, mcad or a ton of allergies. My skin prick test was positive for

most of what I was tested for. My recent tryptase was in the normal range but it was tested while I was

on 30 mg of Wal-zyr daily + Benadryl + ?. After reading about what the specialists would do (instruct patients

to try different meds), I opted

to stay on my meds that are working. If they didn't work I'd see a specialist.

I wanted to add that I typically use 1 tsp of the children's dye free liq, I prefer the walgreen's brand,

immediately when this symptom occurs. And repeat if needed. So far, kow, I only needed to take 4 adult Benadryl

once spread out over a 30 - 60 minute period. My dd has anaphylaxis so I knew I could do this. I've never used

an epi pen.

I'm on 30 mg Wal-zyr everyday now so my lung and esophagus symptoms are under control. Kow.

[gackedo]

Dizzysillyak, you mentioned earlier that there was an inhaler that you took that lowered seizure threshold. Which inhaler is that?

[Dizzysillyak]

Actually now that I think about it, I'm not exactly sure if the inhaler the doctor had me use during a breathing test was the same one he gave me to try. I was so shakey after the test, that I never tried the one he gave me.