Mitral Valve Prolapse Syndrome

[LilacGardenia]

I haven't been on here for awhile. I don't have ME/CFS, but I do share some of the symptoms. I wasn't sure what exactly was causing them. Everyone kept saying lying down supposedly helps, but it made me feel worse (I have a difficult time sleeping and need like 3 pillows to keep propped up.) My fatigue also gets worse when I run or climb stairs and I have to cough or force a really deep breath to get rid of the stiff feeling in my chest. Basically, this type of stuff can be caused by (or is related to) the blood regurgitation from mitral valve prolapse (mitral valve prolapse syndrome.) I met all of the other symptoms and the typical textbook case, so it's pretty safe to say that this is likely the sole source of my super annoying symptoms. I just wanted to share this with other folks because I know I went years just kind of pushing it to the back of my mind without much knowledge as to what it could be and now it's a relief to frame these symptoms and better understand their sources. It's amazing (and sucks) how something so minor as a faulty valve can mess you up.

I'm not exactly sure what will be the next route of treatment (if any). I'm really hoping I don't need surgery or anything major like that, but at the same time, I'm kind of freaked out by the potential complications of having a more severe prolapsed mitral valve, as well as the full blown syndrome. Has anyone else been diagnosed with this or are you familiar with it?

I hope all is well with everyone else. On a side note, I wrote a paper about the issues with ME funding mostly going towards non-biological research and the problematic view of it as a psychosomatic disorder. While I don't have it, I'm definitely praying for some better treatments and understanding of the disease itself. Hugs and lots of love! <3

 

[ukxmrv]

When I started reading your post and got to the bit about feeling worse lying down I though "heart".

Yes, I've heart of that condition. Not sure it if was one of Dr Cheney's talks on heart conditions or before?

Wishing you all the very best for the future, Thanks so much for writing the paper!

 

[Sushi]

I haven't been on here for awhile. I don't have ME/CFS, but I do share some of the symptoms. I wasn't sure what exactly was causing them. Everyone kept saying lying down supposedly helps, but it made me feel worse (I have a difficult time sleeping and need like 3 pillows to keep propped up.) My fatigue also gets worse when I run or climb stairs and I have to cough or force a really deep breath to get rid of the stiff feeling in my chest. Basically, this type of stuff can be caused by (or is related to) the blood regurgitation from mitral valve prolapse (mitral valve prolapse syndrome.) I met all of the other symptoms and the typical textbook case, so it's pretty safe to say that this is likely the sole source of my super annoying symptoms. I just wanted to share this with other folks because I know I went years just kind of pushing it to the back of my mind without much knowledge as to what it could be and now it's a relief to frame these symptoms and better understand their sources. It's amazing (and sucks) how something so minor as a faulty valve can mess you up.

I'm not exactly sure what will be the next route of treatment (if any). I'm really hoping I don't need surgery or anything major like that, but at the same time, I'm kind of freaked out by the potential complications of having a more severe prolapsed mitral valve, as well as the full blown syndrome. Has anyone else been diagnosed with this or are you familiar with it?

I hope all is well with everyone else. On a side note, I wrote a paper about the issues with ME funding mostly going towards non-biological research and the problematic view of it as a psychosomatic disorder. While I don't have it, I'm definitely praying for some better treatments and understanding of the disease itself. Hugs and lots of love! <3

Hi,

Do you have a lot of regurgitation? I have 2 mildly prolapsed valves with negligible regurgitation that docs did not think would give me symptoms--but who knows! I do have the MVP syndrome thing though but mine takes the form of dysautonomia. I am getting another echo next week. Then I have ME too...

Do you understand why propping up on pillows makes sleep easier? I am experimenting with that too.

Best wishes,
Sushi

 

[svetoslav80]

I have mitral valve prolapse since birth. I have had chest pain and arrhytmias but I wouldn't say it was serious. Even with the condition I was able to run and cycle very long distances while I was healthy. The fatigue and pain I suffer now is much worse ...

 

[Esther12]

Thanks for posting, and letting us know what's going on with you. Hopefully you'll now be able to find an effective treatment.

 

[Shell]

Hi, I too have to sleep propped up at night and the stairs are like bloomin' Everest. MVP often comes with some forms of dysautonomia like POTS or IST. I have a "benign heart murmer" or as one cardio called it "sticky valve" with IST. My problems with breathing have worsened and while some seems to be steroid resistant asthma, the breathlessness without wheezing seems orthostatic and/or heart.
I have all the symptoms of heart failure but recent BNPs are neg.
Do you have problems lying on your left side or edema or blood pooling?

Usually (as far as I know) the prolapse itself isn't the major issue, it's the stuff that comes with it. I think it might be worth checking out POTS or something along those lines.
I hope you get some answers. If you have a similar experience to me, you'll have to get past some right daft cardiologists before you hit gold.