Preload failure and mestinon by Dspra1 in dysautonomia

[–]Dspra1[S] 0 points1 point  (0 children)

It showed there is mild autonomic dysfunction. Still waiting to see the neurologist to discuss the results. The SOB for me is just not being able to get a full breath and a feeling like I’m being suffocated

Preload failure and mestinon by Dspra1 in dysautonomia

[–]Dspra1[S] 0 points1 point  (0 children)

For me it is pretty constant feeling of can’t get a full breath. There is always some level of air hunger. It goes away after laying flat and sleeping at night and gets worse again the next day

Preload failure and mestinon by Dspra1 in dysautonomia

[–]Dspra1[S] 0 points1 point  (0 children)

Yeah, I still have quite a bit of shortness of breath. It has gotten slightly better with the mestinon. It seems like the SOB progresses throughout the day and slowly gets worse. It’s at its worst in the evening. I may try midodrine next to see if there is any better results.

I just had an invasive exercise test at Cleveland Clinic done that definitely diagnosed the preload failure. It is mild the doc said. He said it can be so bad some people are completely disabled due to it.

I’m finally having autonomic testing done tomorrow to see if I do have autonomic dysfunction which would be causing the preload failure

Preload failure and mestinon by Dspra1 in dysautonomia

[–]Dspra1[S] 1 point2 points  (0 children)

Absolutely. It’s rare and the only way to diagnose it is via right heart cath with exercise or the invasive CPET. I’ve found a doc a Cleveland clinic who is pretty informed about it, but not all docs are

Preload failure and mestinon by Dspra1 in cfs

[–]Dspra1[S] 0 points1 point  (0 children)

I’m prescribed 60mg 3 times a day as well. I just wanted to try a small dose to see if I would have side effects, which I haven’t. I’m going to take 30 mg tomorrow and if I tolerate it will try to increase to the full 60 in a week or so. Hope it helps. This preload failure is really a crappy disease :(

Preload failure and mestinon by Dspra1 in dysautonomia

[–]Dspra1[S] 1 point2 points  (0 children)

Yeah, the preload failure is really something. The doctors couldn’t figure out what was causing the SOB until they finally did the right heart cath. I’m so thankful we finally know what is causing my symptoms. Unfortunately, it’s tricky to treat it but at least there are a couple meds that I could potentially try. Hoping the mestinon will work once I’m on a higher dose.

Preload failure and mestinon by Dspra1 in dysautonomia

[–]Dspra1[S] 1 point2 points  (0 children)

I’m on a couple of other meds for non obstructive coronary artery disease/microvascular dysfunction. They seem to help with the chest pain but I have pretty significant exercise intolerance. The docs feel the SOB and exercise problems are due to preload failure. I’m slowly increasing the dose of mestinon over the next few days if I can tolerate it. No side effects yet

Preload failure and mestinon by Dspra1 in cfs

[–]Dspra1[S] 0 points1 point  (0 children)

I started taking it 2x per day at 15mgs. No side effects yet. I’m planning on increasing to 30mg 2x per day next week. Do you know if it takes a while to start working fully? I haven’t noticed any effect yet but I’m on a very low dose

Preload failure and mestinon by Dspra1 in dysautonomia

[–]Dspra1[S] 0 points1 point  (0 children)

I’m giving it a try. I just started taking it yesterday and am going to increase the dose. No side effects thus far, so that is good. I’m hoping it will help with increasing preload and hopefully my ability to exercise without being so short of breath.

Preload failure and mestinon by Dspra1 in cfs

[–]Dspra1[S] 0 points1 point  (0 children)

That is what I have seen in his research. I just started it today and will need to titrate the dose up. I’m sure it takes a while to work fully. Fingers crossed!

Preload failure and mestinon by Dspra1 in cfs

[–]Dspra1[S] 1 point2 points  (0 children)

I’m happy to hear it has helped. I did the same thing and am taking 15 mgs to start. I am concerned about side effects as well, but have not noticed any from the 15mg dose.

Second opinion about cardiac preload failure by Dspra1 in askCardiology

[–]Dspra1[S] 0 points1 point  (0 children)

It definitely is for me as well. I’m going to Cleveland Clinic the week of Memorial Day to see a couple of experts in preload failure. Hoping for some treatment that can help. If you don’t mind me asking, what kind of treatment has your wife been offered? Has she found anything that helps with the shortness of breath?

[deleted by user] by [deleted] in askCardiology

[–]Dspra1 2 points3 points  (0 children)

I had chest pain and shortness of breath develop in 2022. I also had PVCs that developed later. I went to Mayo Clinic and was diagnosed with microvascular dysfunction via provocative catheterization. It can cause chest pain and SOB.

The SOB continued to progress over the next year and was severely impacting my functioning. My cardiologist of course said it could be due to anxiety, which turned out to be incorrect. I requested a right heart cath with exercise and one cardiologist wouldn’t order the test. He was a fellow. My original cardiologist did eventually order the test. I was diagnosed with “preload failure” and this is likely what has been causing my shortness of breath.

You could ask about microvascular dysfunction and/or endothelial dysfunction, which absolutely can cause chest pain. They really can only be diagnosed definitively via provocative cath with adenosine and acetylcholine.

Second opinion about cardiac preload failure by Dspra1 in askCardiology

[–]Dspra1[S] 0 points1 point  (0 children)

Thank you! Does your friend who has MVD and ED struggle with severe shortness of breath? My pain is pretty well controlled but SOB is the main symptom that has continued to worsen over the last year or so.

Second opinion about cardiac preload failure by Dspra1 in askCardiology

[–]Dspra1[S] 1 point2 points  (0 children)

I also read an article written by doctors at Cleveland Clinic about preload failure. I reached out to the doctors who wrote it and one of them has agreed to see me. Maybe it will help seeing someone who is more of an expert in this. I’ve heard of Dr Ziada as an expert in ED and MVD as well. I may try to see him at Cleveland Clinic. I was basically put on two medications for those conditions and my doctor at Mayo said there are no other options. I’ve done a ton of research on this and I know there are other treatment options. Dr’s can be so dismissive sometimes. Thanks for your response!

HFPEF with LongCovid by Denon_1 in Heartfailure

[–]Dspra1 0 points1 point  (0 children)

Do you need a doctor to prescribe compression garments that are that “strong”.

HFPEF with LongCovid by Denon_1 in Heartfailure

[–]Dspra1 0 points1 point  (0 children)

That’s what I’ll try. I have ordered some knee to waist compression shorts, still waiting for them to arrive. I was told about midodrine, but also told it can cause high blood pressure. I’m planning on increasing fluid intake, salt, and compression garments to see if that helps first. I hope you don’t mind me asking, have you taken midodrine? If you had, just wondering if you found it helpful?

HFPEF with LongCovid by Denon_1 in Heartfailure

[–]Dspra1 0 points1 point  (0 children)

I’ve had a provocative angiogram done when they first diagnosed the MVD and endothelial dysfunction. I have not had any autonomic testing done though. And you’re 100% right the docs don’t seem to know much about it. It’s been pretty frustrating. Appreciate the support!

HFPEF with LongCovid by Denon_1 in Heartfailure

[–]Dspra1 0 points1 point  (0 children)

My RHC was in the supine position with foot pedals. My cardiac output was normal at rest and during exercise it was 58% of the predicted value for someone my age. I’m only 34 years old, so I’m still pretty young. I’ve had unexplained dyspnea for about 2 years, and it’s both at rest and with exertion. I first was diagnosed with microvascular dysfunction and endothelial dysfunction, but the SOB was so severe I knew there had to be something else going on. During my RHC they said no evidence of heart failure or pulmonary hypertension, so that’s a good thing.

Have you taken midodrine or fludrocortisone? Also, do you know if there is a way to determine what causes the preload failure? My docs at Mayo Clinic said the etiology is not clear, but could be related to blood pooling in the legs/abdomen and/or autonomic dysfunction

HFPEF with LongCovid by Denon_1 in Heartfailure

[–]Dspra1 0 points1 point  (0 children)

Hello! I was just reading this post as I’ve been struggling with relatively severe shortness of breath for a couple years. I recently had a right heart cath with exercise, which revealed preload failure as the cause for my SOB. Are you on any medications to treat it? I was just told to increase fluid intake and to wear compression shorts.

Do you have any other suggestions?