1. < Post-COVID Recovery & COVID-19

Mestinon for Long Covid

Posted by j77 @j77, Mar 5 2:48am

Has anyone taken Mestinon to help with Long Covid?I was doing some research and it looks like it stimulates the vagus nerve which covid attacks.I have been ill for over 2 years which I believe to be Long covid.No Doctor can figure out what is wrong.Trouble swallowing,walking,slow talking,loss of strength in face and body.They have checked for just about everything and not found much.I feel like alot of these symptoms mimic Myasthenia Gravis which can be brought on by a virus,stress,etc.Basically anything that weakens your immune system.I am just wondering if this drug could possibly help get the signals back up and running in the body when the vagus nerve is damaged by covid.I read one longcovid doctor was trying it out,but I would be interested to hear of anyone that has tried it.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Lucy | @welchllb | Mar 5 8:45am

I am taking Mestinon. After 3+ years of suffering with shortness of breath, dizziness, Post Exertional Malaise, etc, I was diagnosed with POTS. The diagnosis was made as a result of a tilt table test. I take 1/2 tablet of Pyridostigmine (generic Mestinon) twice a day. My neurologist says that I will be taking it for the rest of my life. I have very few side effects. I got my life back and am now walking vigorously, playing golf, participating in aerobic dancing, etc. Once in awhile, after an especially busy day, I feel the need to take a break - get short of breath, dizzy, etc. My doctor says I still need to listen to my body. I continue to suffer with migraine headaches, but not everyday, and GI problems are present. I have had migraines on and off since adolescence. I, too, researched the drug and understand that it helps with acetylcholine transmission between nerves. In any case, I call it my wonder drug. Before I met my neurologist and received a fresh look at my Long Covid, I had settled into thinking that I would always be a less active person than before Covid. Good luck and if you try Mestinon, let me know how it goes.

REPLY
2 replies
j77 | @j77 | Mar 5 9:08am
In reply to @welchllb "I am taking Mestinon. After 3+ years of suffering with shortness of breath, dizziness, Post Exertional..." + (show)
@welchllb

I am taking Mestinon. After 3+ years of suffering with shortness of breath, dizziness, Post Exertional Malaise, etc, I was diagnosed with POTS. The diagnosis was made as a result of a tilt table test. I take 1/2 tablet of Pyridostigmine (generic Mestinon) twice a day. My neurologist says that I will be taking it for the rest of my life. I have very few side effects. I got my life back and am now walking vigorously, playing golf, participating in aerobic dancing, etc. Once in awhile, after an especially busy day, I feel the need to take a break - get short of breath, dizzy, etc. My doctor says I still need to listen to my body. I continue to suffer with migraine headaches, but not everyday, and GI problems are present. I have had migraines on and off since adolescence. I, too, researched the drug and understand that it helps with acetylcholine transmission between nerves. In any case, I call it my wonder drug. Before I met my neurologist and received a fresh look at my Long Covid, I had settled into thinking that I would always be a less active person than before Covid. Good luck and if you try Mestinon, let me know how it goes.

Jump to this post

Thankyou so much for responding!That is wonderful that it is helping and you are finally feeling better.I am desperate at this point and trying to see if anything would help.My whole body was attacked and the muscle weakness is getting worse.I try to explain to the doctors that I have lost the strength in my diaphram/sternum area that normally pushes the belly down and they just don't understand.I also have heart issues along with my other physical symptoms.I notice that if I hear a loud noise or anything like that my heart goes crazy.Almost like it can't handle it.I never had an issue like that until this illness came on.I really believe it is the vagus nerve damage that was probably brought on from covid.I have tried tens machines,PT,chiropractor,acupuncturist,but nothing has helped.

REPLY
1 reply
mvshellydr | @mvshellydr | Apr 4 11:00am
In reply to @j77 "Thankyou so much for responding!That is wonderful that it is helping and you are finally feeling..." + (show)
@j77

Thankyou so much for responding!That is wonderful that it is helping and you are finally feeling better.I am desperate at this point and trying to see if anything would help.My whole body was attacked and the muscle weakness is getting worse.I try to explain to the doctors that I have lost the strength in my diaphram/sternum area that normally pushes the belly down and they just don't understand.I also have heart issues along with my other physical symptoms.I notice that if I hear a loud noise or anything like that my heart goes crazy.Almost like it can't handle it.I never had an issue like that until this illness came on.I really believe it is the vagus nerve damage that was probably brought on from covid.I have tried tens machines,PT,chiropractor,acupuncturist,but nothing has helped.

Jump to this post

Hi
Short answer: the Mestinon was a miracle for me. I started low last summer- 8 mo ago. I now take 60 am and 30 pm with no side effects.
I had a flare last month after a family crisis and added Nicotine patch 7 mg.

I am 18 mo with Long Covid. Like others I’ve tried PT, supplements, acupuncture , etc.

REPLY
1 reply
j77 | @j77 | Apr 4 11:09am
In reply to @mvshellydr "Hi Short answer: the Mestinon was a miracle for me. I started low last summer- 8..." + (show)
@mvshellydr

Hi
Short answer: the Mestinon was a miracle for me. I started low last summer- 8 mo ago. I now take 60 am and 30 pm with no side effects.
I had a flare last month after a family crisis and added Nicotine patch 7 mg.

I am 18 mo with Long Covid. Like others I’ve tried PT, supplements, acupuncture , etc.

Jump to this post

That is Amazing to hear!The Doctors still don't know what is wrong with me and I do think it is related to long covid.The neurologist did order new blood work for seronegative Myasthenia Diseases.My TSH was slightly high so they raised my synthroid level.They are also testing me for Cushings Disease.My whole body was atracked,but the specialists can only find little things.I have lost the strength in my pelvis area,shoulders,and trunk.I was just thinking mestinon would give me the strength to start exercising again.I went from an athlete to basically disabled.I did do a Genetic test that showed a possibility of MD Diseases such as limb girdle muscular dystrophy.We don't have MD on either side of my Family,but maybe covid triggered something.It is just frustrating the Doctors have no idea what is wrong with me.

REPLY
1 reply
mvshellydr | @mvshellydr | Apr 4 11:49am
In reply to @j77 "That is Amazing to hear!The Doctors still don't know what is wrong with me and I..." + (show)
@j77

That is Amazing to hear!The Doctors still don't know what is wrong with me and I do think it is related to long covid.The neurologist did order new blood work for seronegative Myasthenia Diseases.My TSH was slightly high so they raised my synthroid level.They are also testing me for Cushings Disease.My whole body was atracked,but the specialists can only find little things.I have lost the strength in my pelvis area,shoulders,and trunk.I was just thinking mestinon would give me the strength to start exercising again.I went from an athlete to basically disabled.I did do a Genetic test that showed a possibility of MD Diseases such as limb girdle muscular dystrophy.We don't have MD on either side of my Family,but maybe covid triggered something.It is just frustrating the Doctors have no idea what is wrong with me.

Jump to this post

It’s extremely frustrating. I contracted Covid on a trip to India, Aug 22. Prior to that I had been extremely active, I have my own medical practice, and typically walk/hike/ride horses 2 hrs a day, or more.
I was completely debilitated, unable to think, climb a few stairs, or even just standing for a short while was impossible.
I do believe there is hope.
Try the Mestinon !

REPLY
1 reply
j77 | @j77 | Apr 4 12:01pm
In reply to @mvshellydr "It’s extremely frustrating. I contracted Covid on a trip to India, Aug 22. Prior to that..." + (show)
@mvshellydr

It’s extremely frustrating. I contracted Covid on a trip to India, Aug 22. Prior to that I had been extremely active, I have my own medical practice, and typically walk/hike/ride horses 2 hrs a day, or more.
I was completely debilitated, unable to think, climb a few stairs, or even just standing for a short while was impossible.
I do believe there is hope.
Try the Mestinon !

Jump to this post

Yes!I was the same.I worked in healthcare and was always moving around.I can't even stand to take a shower because of the lack of strength in my trunk of my body.It is so bizarre.Hopefully my neurologist will just let me try it for a little while to see.Thanks gain!

REPLY
Lucy | @welchllb | Apr 5 8:14am

Glad to hear that Mestinon is working for others. Also, I'm going to try the increased dose as mvshellydr describes because I have breakthroughs, too. I am so much better since starting Mestinon but still have times with SOB, weakness, fatigue when I do too much.

REPLY
bettew | @bettew | Apr 6 6:01am
In reply to @welchllb "I am taking Mestinon. After 3+ years of suffering with shortness of breath, dizziness, Post Exertional..." + (show)
@welchllb

I am taking Mestinon. After 3+ years of suffering with shortness of breath, dizziness, Post Exertional Malaise, etc, I was diagnosed with POTS. The diagnosis was made as a result of a tilt table test. I take 1/2 tablet of Pyridostigmine (generic Mestinon) twice a day. My neurologist says that I will be taking it for the rest of my life. I have very few side effects. I got my life back and am now walking vigorously, playing golf, participating in aerobic dancing, etc. Once in awhile, after an especially busy day, I feel the need to take a break - get short of breath, dizzy, etc. My doctor says I still need to listen to my body. I continue to suffer with migraine headaches, but not everyday, and GI problems are present. I have had migraines on and off since adolescence. I, too, researched the drug and understand that it helps with acetylcholine transmission between nerves. In any case, I call it my wonder drug. Before I met my neurologist and received a fresh look at my Long Covid, I had settled into thinking that I would always be a less active person than before Covid. Good luck and if you try Mestinon, let me know how it goes.

Jump to this post

did mestinon reduce migraines at all?

REPLY
1 reply
lkirnbauer | @lkirnbauer | Apr 6 9:01am

I lost my taste and smell in December of 2022 and am currently having Stellage Ganglion Block injections. I’ve had 3 and so far not much improvement. Do you know if this Mestinon would help me with that? I’m loosing hope.

REPLY
Lucy | @welchllb | Apr 6 10:59am
In reply to @bettew "did mestinon reduce migraines at all?" + (show)
@bettew

did mestinon reduce migraines at all?

Jump to this post

I'm not sure about the migraine piece. I don't have them right now but did have them after starting Mestinon. They come and go mysteriously. Sorry I can't be more specific.

REPLY
Please sign in or register to post a reply.