Midodrine vs Droxidopa vs Mestinon

[Gingergrrl]

@charlie1

Gingergrrl - Happy New Year ! May 2015 be the year of better health for all of us!

Thank you and to you too!

I have been off Mestinon for 2 days now and have not noticed anything different than when on it. I suspect I'll d/c it all together and start taking DHEA soon to see if that gives me more strength.(I'm extremely low in dhea).

Charlie, how have you been doing off of the Mestinon? I stopped my Midodrine for two days and my BP went back to the 80's/50's. I have now been back on it for several days and today my BP was actually 101/66 so I know it is definitely helping me. I tried DHEA a few times b/c I was also low in it but was not able to tolerate it even at a low dose of 5 mg. Did you end up trying it and if so, how is it working?

I don't know if it's just a matter of time that has made my symptoms not as severe as 3 yrs ago or if the Mestinon is in fact the reason. It might be worth a try for you to try it b/c I was in my backyard walking the dog within days of taking it! Prior to that I was couch bound.

Wow, that is great and I dream of some day being able to walk my dog again!

Although still weak, I stayed close to symptom free for about 6 wks and then symptoms started being felt again which I now think was due to blood pressure plummeting....the feeling of tachycardia and low blood pressure are so similar (to me).

For me, they feel different but I think that is b/c my tachycardia can go ridiculously high without the beta blocker.

My neurologist suggested I go for counseling since he didn't think anything else could be done for me! Out of desperation, a year ago I complied but therapy talk sessions have not done anything to improve my symptoms. Go figure....

I wish doctors could understand the role of counseling and what it actually can and cannot do. I say this as a former social worker/therapist myself before I became ill and lost my entire career due to ME/CFS.

Hopefully this information helps you Gingergrrl. Let's keep in touch.

It was definitely helpful and I would love to keep in touch. Please let me know what meds you end up with and how you are doing re: the tachy and low BP. Do you also get shortness of breath or chest pain? I have a follow up appt with my cardio tomorrow and will post an update.

 

[charlie1]

@Gingergrrl How did the cardio app't go? Preliminary testing a few years ago showed there to be nothing wrong with my heart so I don't have a cardiologist but will be pursuing that next if my symptoms and abdominal blood pressures continue. My blood pressure is so wacky but bc I've had the diagnosis of POTS, it all gets blamed on autonomic dysfunction and the possibility of it actually being a heart issue is never taken seriously.

You asked about my discontinuation of the Mestinon. Weird things are happening which may or may not be related to being off Mestinon. My pulse pressure is very wide while having very low diastolic blood pressure. On Tuesday I felt ill and took my bp...85/55 . 15 min later I felt much worse and took it again. 114/43! In 15 minutes my pulse pressure rose from 30 - 71 pts. 71 is much too wide a pulse pressure! (my BP machine is fine)

So 3 days ago was the one week mark of being off Mestinon. I've not had anything remarkable to document other than the last few days I've been having occasional, very low diastolic pressure, especially in the morning. Examples within the last 3 days are:108/45, 114/43, 101/41 with pulse in the high 60's (weird that finally I'm having a good heart rate yet diastolic is so low) But I've also had blood pressure recorded at 86/36 in the past while still on Mestinon. That's why I decided to discontinue it since I wasn't sure if it was really helping butnow I am getting the wide pulse pressures with low diastolic and wonder if maybe it was helping afterall.

It's quite unusual for me not to be bradycardic yet my heart rate has been over 60 for 3 days in a row. Yesterday I was very busy so expected to feel crappy today with my usual symptoms of overdoing it: low blood pressure, low heart rate and severe PEM. But I'm not feeling as horrible as I normally would and haven't experienced any PEM! I don't get what's going on! Maybe all the recent activity will catch up with me tomorrow. Or maybe not and being off the Mestinon is good for me. (but a diastolic that low can't be ignored, right??)Anyway, just wanted to report my vitals as requested And if anyone has any insight into what might be happening to me since off the Mestinon, let me know!

I found this article...thought you might be interested in reading.

http://www.medpagetoday.com/Cardiology/Hypertension/2676

 

[Gingergrrl]

@charlie1

How did the cardio app't go? Preliminary testing a few years ago showed there to be nothing wrong with my heart so I don't have a cardiologist but will be pursuing that next if my symptoms and abdominal blood pressures continue.

My cardio appt went about as expected and he feels I have severe dysautonomia and microvascular angina but has zero understanding of ME/CFS. As many times as I have tried to explain it, it is as if he has never heard the term in his life. He asked me again if I have been able to exercise (even though I am now using a wheelchair and can barely breathe!) I am sticking with Atenolol & Midodrine and I again declined Droxidopa b/c of the strict schedule I would have to follow by the protocol of the company who makes it.

I asked if I could try 1-2 pills to see how I tolerate it but he said no. I'd have to follow the tapering schedule which is four pills just on Day One and then increase daily which my body would never tolerate so I declined. He has no experience with this med so I would be a guinea pig and my research shows it has more dangerous potential side effects than Midodrine. We also discussed the Nitroglycerine patch but only if I try the spray and it works. I have the spray but have not tried it yet. I did not have it with me during my worst episode on 12/23 and Thank God have not had another episode like that since (and hoping I never do.) But if I do, I will try the spray.

What did you mean about "abdominal blood pressure?" Was that a typo or a real term?

My blood pressure is so wacky but bc I've had the diagnosis of POTS, it all gets blamed on autonomic dysfunction and the possibility of it actually being a heart issue is never taken seriously.

Have you had any tests to rule out a separate cardiac issue? I certainly don't mean that POTS is not a cardiac issue but have you had basic stuff like an EKG, echocardiogram, holter monitor or Zio Patch, etc? I still do believe that my issues are autonomic from ME/CFS itself but was glad to have other cardiac tests as well. I don't know how we ever really know for sure.

You asked about my discontinuation of the Mestinon. Weird things are happening which may or may not be related to being off Mestinon. My pulse pressure is very wide while having very low diastolic blood pressure. On Tuesday I felt ill and took my bp...85/55 . 15 min later I felt much worse and took it again. 114/43! In 15 minutes my pulse pressure rose from 30 - 71 pts. 71 is much too wide a pulse pressure! (my BP machine is fine)

Wow, that is a really wide range and I have never had such a large pulse pressure. I am not sure what that means. My BP with Midodrine is staying around the mid 90's/mid 60's which is okay for me.

So 3 days ago was the one week mark of being off Mestinon. I've not had anything remarkable to document other than the last few days I've been having occasional, very low diastolic pressure, especially in the morning. Examples within the last 3 days are:108/45, 114/43, 101/41 with pulse in the high 60's (weird that finally I'm having a good heart rate yet diastolic is so low) But I've also had blood pressure recorded at 86/36 in the past while still on Mestinon. That's why I decided to discontinue it since I wasn't sure if it was really helping butnow I am getting the wide pulse pressures with low diastolic and wonder if maybe it was helping afterall.

Do you think you will go back on Mestinon or check with your doctor? Did you ever notice if Mestinon gave you more energy or improved any other symptoms for you? I have never tried it but am still curious.

It's quite unusual for me not to be bradycardic yet my heart rate has been over 60 for 3 days in a row.

I am confused, do you mean that you are bradycardic most of the time but also have POTS? Do you also have tachycardia?

Yesterday I was very busy so expected to feel crappy today with my usual symptoms of overdoing it: low blood pressure, low heart rate and severe PEM. But I'm not feeling as horrible as I normally would and haven't experienced any PEM!

That's great and who knows why these things occur!

(but a diastolic that low can't be ignored, right??)

I don't think so and I would check it out with your doctor.

Anyway, just wanted to report my vitals as requested And if anyone has any insight into what might be happening to me since off the Mestinon, let me know!

Thanks and I appreciate the update. Feel free to PM me any time as well.

I found this article...thought you might be interested in reading.

http://www.medpagetoday.com/Cardiology/Hypertension/2676

Thanks and I will look at it soon!

 

[voner]

I just got done reading this thread for the first time and I want to thank everyone who participated in them as it was very helpful and informative for me.

I do have experience with Mestinon. The first time I used it, I actually was taking it for different reasons than POTS..... long story. this was 10 years ago or more before I knew The meaning of the term postexertional malaise.... I used to call it "kickback". even though I was taking messaging for a different reason, I noticed that the "kickback" was really diminished with Mestinon. So I continue taking it for years and years until I eventually just went off of it because of financial reasons and I couldn't really feel that I was still getting benefit from it.

I tried a trial of it last year for POTS and I could not tolerate it. Mestinon, for what I remember, is a parasympathetic – it increases a person parasympathetic response – which can result in digestive problems. I had a really horrible stomach pains and other digestive issues when I was trying it the second time and quit after a few days. I was really motivated to try to stay on the Mestinon because of my previous wonderful experience with it, but I just could not handle it.

thanks again for this thread.

any suggestions on finding a good autonomic specialist? Or do you think it's just better to save up money and go to Vanderbilt?

 

[Gingergrrl]

@voner I apologize I don't have time to reply in detail right now but wanted to update that I ended up having a horrible experience with Mestinon after only trying an 1/8 pill a few weeks ago. I never tried Droxidopa so cannot comment on that one. I stopped Midodrine b/c it really was not working for me. I never felt any negative reaction from it but it barely raised my BP from 80's/50's to 90's/60's. I am now taking a low dose of Valcyte and for whatever strange reason, it is raising my BP better than anything else I have tried! Will reply more later.

 

[PatJ]

@Gingergrrl: It has been many months since your last post on this thread. What results have you had from the Valcyte?

 

[Gingergrrl]

@Gingergrrl: It has been many months since your last post on this thread. What results have you had from the Valcyte?

@PatJ I had to stop the Valcyte and could not tolerate it at any dose even 1/64th of a tablet. It is a great med for many, and I made several attempts but it was just not for me!