mestinon
 

I've had a pretty rough summer. I've had swallowing issues since Dec. but managed to kind of get through. Then, I had a bad choking scare in early May. A few weeks later, I was doing p90x chest and arms which provoked esophageal spasms. These led to severe panic attacks until I found out what was going on. I somewhat have this under control. But I have had incredible fatigue since May. To the point that I can't even eat at times. I just don't feel like it. (This could be stress because my appetite is always first to go when I am stressed.) My weight is down to 105. My blood pressure this morning was 85/57. My temp was 107. I am 44 and my mother in law who just had knee surgery is literally running circles around me. A few months ago, I was running 25-30 miles per week. Now, I cannot walk without being breathless and exhausted.

My neuro suggested in June that I quit my levothyroxine (50mcg/day) because of my weight and because of my panic attacks. I have to admit that I am much calmer now. But I don't have the energy to get too excited about anything.

For the past week, I have been running a low grade fever at night. My body hates me.

My pcp is testing for tick fever. My husband currently has it.

I spoke with my neuro this morning and he has prescribed a low dose of mestinon. He feels that it will help my blood pressure and autonomic issues. By the way, other than documented low blood pressure, I have not had autonomic issues tested.

I am a little scared. I do not want to do anything to trigger another esophageal spasm.

Has anyone tried mestinon for autonomic issues? Did it trigger spasms for any of you?

I just kind of want to cry. I miss the old me. I don't like who I am becoming.

Yes, I have tried Mestinon for autonomic issues...and yes, I did have some spasms as a result.

I have severe autonomic neuropathy and had tried every treatment available, except Mestinon to help control my neurally mediated hypotension. So my new autonomic specialist suggested I try Mestinon...just a small dose. Unfortunately, I could only take it for 3 days, because within 30 minutes of taking the medication (each dose), I would have an asthma attack. This is a rare but serious complication/side-effect of the Mestinon as it can cause bronchial spasms, leading to an attack. I also had minor spasms of muscles in my legs (fasciculations).

Also, spasms (in many forms) can be a part of autonomic dysfunction. So you may have more autonomic problems than you realize. I have livedo reticularis rash caused by spasms of the medium sized blood vessels and also vasospasms/artial spasms...both in my case are caused by the autonomic neuropathy. Even my swallowing difficulty is part of my neuropathy.

I will say there has been positive results for many people with Mestinon, so you shouldn't take my experience as a representation of all or even most patients. You will know relatively quick whether it will help you or not. If it increases your spasms, then stop it. But it also may help you.

Hope this helps.

Thanks for sharing your experience. I am fearful because I live half an hour from the nearest hospital. And when I went to this ER in May with severe chest pain, none of them have ever heard of SFN. They did an EKG and said I was fine. For 5 days I couldn't eat solid food. Finally I drove 1.5 hours to a real hospital.

Did you have asthma before taking mestinon?

I'm thinking I should at least wait for the tick fever testing to come back before trying it.

I've been taking for a week now and usually every drug gives me terrible side effects. This seems to being doing zilch. Good that its not doing something bad, but doesn't seem to be doing anything good. I'm going to call my dr and see what he thinks. I so suffer from an autonomic type of induced asthma and do have allergies, but this isn't causing any issues with that. I was pretty terrified to try it.

Yes, I do have adult onset asthma as a result of my Sjogren's. But it's well controlled with Symbicort and rescue inhaler (which I don't use often). However when taking the Mestinon, I was getting severe asthma attack within 30 minutes of taking a dose...every time.

There is very effective treatment for esophageal spasms...nitrates and calcium channel blockers just to start with. I take both for my vasospasms (which have same symptoms) and have nitro for emergency.

Did you have manometry to confirm Dx? If so, why didn't they opt to treat you with medications?...even just to have nitro, should it flare up.

No official diagnosis. I made an appt with endo in August. My pcp and neuro both feel that this is the issue. Had 2 ecg's both were fine. Blood pressure is low, never high.

You should see a GI about it...they deal with esophageal issues.

The manometry is an uncomfortable test but good test to confirm/deny the condition. They treat this the same way they treat vasospasms of cardiac arteries (symptoms are exactly the same---chest pain like a heart attack). Again, very treatable.

Being that you have other autonomic issues with BP, swallowing, etc, this is certainly related (spasms of this nature are typically autonomic related). Hope you get to the bottom of it. Not sure why you are seeing endo (hormone doctor) for this.

Sorry not endo, gastro.

I tried the mestinon. A half dose. I've taken it once a day 30 mg for two days. I really can't tell it does much. However, I ran 2.5 miles on treadmill tonight and I went for a swim this afternoon. Which is pretty remarkable when I think about how awful I have felt for the past month. I think the key for me is to just stay cool. The heat kills me.

I am now 4 weeks off of levo. I think that my body has finally adapted. My blood pressure is "normal" 90/60 now. I have always been on the low side. When I am regularly running, it gets back to normal. But it's sure hard to run when you feel like you're going to pass out.

I appreciate everyone's comments. It is scary trying a new med. My body has enough of it's own side effects without others being added to it.

I tried it for a week at the same dose, sometimes adding another 30 mg in the evening. I didn't notice any bad or good effects until the last dose I took with in 20 minutes my face and head became very hot and flushed feeling.
The good thing about this med is that it is short acting so the feeling only lasted for a short time. I think I know now that increasing to 60mg might not be the answer. This med might not be for me. There are some great stories online though of how it helped people with dystautonmia, fibro stuff.