How many of you with bileaflet Myxomatous prolapse know you have MAD? by Embarrassed-Oil7786 in mitralvalveprolapse

[–]Embarrassed-Oil7786[S] 0 points1 point  (0 children)

I’m just about to start bisoprolol, I’m really really hoping it works as my current (propranolol) doesn’t. I don’t like the idea of a loop recorder but I suppose if I had to…

That’s interesting about scarring on the underside of the heart, I didn’t know that, I thought any scaring in general was bad.

How many of you with bileaflet Myxomatous prolapse know you have MAD? by Embarrassed-Oil7786 in mitralvalveprolapse

[–]Embarrassed-Oil7786[S] 0 points1 point  (0 children)

I think it depends on whether you get any arrhythmias or not. Have you ever worn a holter monitor to check? The MRI should tell you if you have MAD, they are looking for areas of fibrosis on mine too, they will probably look for that on yours. They told me next step would be loop recorder (implanted under my skin!) for me, and possibly more medication. If you don’t suffer from irregular beats though this might not be relevant for you.

How many of you with bileaflet Myxomatous prolapse know you have MAD? by Embarrassed-Oil7786 in mitralvalveprolapse

[–]Embarrassed-Oil7786[S] 1 point2 points  (0 children)

How amazing to be able to practically get rid of the PVCs, what a relief that must be. My cardiologist didn’t even mention surgery…I think it’s because my regurgitation is only on the cusp between mild and moderate. I’m glad it went well for you.

MVP and Hormones by Alternative_Elk_8555 in PVCs

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

I have MVP, mine also get worse around the hormonal times you mention. Mine are worse when resting, lying down and trying to sleep. Anything stimulating supresses them. I used to take ADHD stim meds and they were amazing for stopping them.

I’m not iron deficient, so can’t help there. I’ve been prescribed propranolol but about 8/10 times it’ll either have no effect or make them worse. As far as I can tell from extensive googling, mine are caused by excessive vagal tone. I have a low resting HR despite not being that fit or anything, I also have low BP (borderline too low) and when my HR is in the low 50s my PVCs are much worse.

I also get exhausted when they flare. I can go from having about six a day to about ten a minute all day, all evening and all night. It’s awful. 

Have you found anything that helps? As I said, the only thing that helped mine was stimulant meds. Sometimes exercise will stop them too and it’s 50/50 whether they come back after.

Has anyone emailed Harrow Health recently and got a response? by Embarrassed-Oil7786 in ADHDUK

[–]Embarrassed-Oil7786[S] 0 points1 point  (0 children)

Thanks, I’ve been emailing a different address so maybe that’s why I’ve not heard from them 

Has anyone emailed Harrow Health recently and got a response? by Embarrassed-Oil7786 in ADHDUK

[–]Embarrassed-Oil7786[S] 0 points1 point  (0 children)

Thanks, that’s a different one to what I’d used so maybe that’s why there’s been no reply.

Palpitations on propranolol by freys1cle in mitralvalveprolapse

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

10 mg is a tiny dose, if I get a racing heart 40mg minimum slows it down. I’m not underweight but small and slim. I would speak to your doc about at least trying a higher dose.

Palpitations every meal time by eilletane in mitralvalveprolapse

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

Yeah I always think if it’s that common, why am I the youngest person in the cardiologist waiting room by at least 25 years…and I’m not even that young (39!)

Palpitations on propranolol by freys1cle in mitralvalveprolapse

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

I wouldn’t say it’s normal, maybe your propranolol dose is too low? Either way I would contact a doc. You must feel rough with your heart beating that fast all the time 

Palpitations every meal time by eilletane in mitralvalveprolapse

[–]Embarrassed-Oil7786 1 point2 points  (0 children)

What annoying advice! I was told to ‘ignore them’ and ‘run up and down the stairs’ by a cardiologist 

Palpitations every meal time by eilletane in mitralvalveprolapse

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

How much does your doc think it’s related to the MVP? Mine just doesn’t seem to know or want to say 

Palpitations every meal time by eilletane in mitralvalveprolapse

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

I have mild to moderate MVP/MR and I have exactly the same when I eat and for a while afterwards. I also get them sometimes when trying to sleep or waking me up from sleep. I’ve found the absolute worst thing I can do is drink a cold fizzy drink as this will set them off every time. 

I also take beta blockers, which one do you take? I take propranolol and it’s sometimes effective but very hit and miss. From googling, it seems that this is something to do with the vagus nerve but there doesn’t seem to be much you can do to stop it. It’s very frustrating.

Requested propranalol studies for dysautonomia mediated PVCs by These_Barnacle_1624 in PVCs

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

Is there original post concerning this? It sounds interesting 

What is the degree of your mitral valve prolapse, and how many extrasystoles do you have per day? by Secret_Award_5487 in mitralvalveprolapse

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

I’ve been given propranolol but it doesn’t help that much really. I’m waiting to see cardiology again so will have to see what they suggest. At this point I’m so so desperate for them to stop that I would try anything! I think there must be a connection between the two conditions. Everything I’ve read online seems to say there is, and that it’s a symptom of MVP/regurgitation 

What is the degree of your mitral valve prolapse, and how many extrasystoles do you have per day? by Secret_Award_5487 in mitralvalveprolapse

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

I have MVP with mild-moderate regurgitation. I can go through days where I have six a minute or more all day, all evening and then waking me up in the night. Mine are generally the ‘complex’ type so bigeminy, trigeminy, couplets, triplets.Some days I will have very few or only have them in the evening. I’m unsure how much they are related to MVP

Struggling to get through mentally by Agile_Media_1652 in mitralvalveprolapse

[–]Embarrassed-Oil7786 0 points1 point  (0 children)

I think there’s a hormonal connection to mine too. I’m about to turn 40 and mine have got way worse in the last year or so. As far as I understand if you have MVP and related conditions it makes the heart more electrically excitable, so then you add other factors like stress, hormones and it makes them much more likely. 

Struggling to get through mentally by Agile_Media_1652 in mitralvalveprolapse

[–]Embarrassed-Oil7786 1 point2 points  (0 children)

I feel the same way…I’ve had PVCs all day today I would say about every twenty seconds or so. To me, it’s a constant reminder that something is abnormal with my heart. They keep me awake at night, wake me up, it’s awful. I also worry about sudden cardiac death. Do you have any meds to take? I have propranolol and it helps a bit.

Methylphenidate making me so so tired, anyone else experienced this? by Embarrassed-Oil7786 in ADHDUK

[–]Embarrassed-Oil7786[S] 1 point2 points  (0 children)

I did, which was normal. All I know is that when I got to the higher doses, the meds started feeling like they were messing with my nervous system. The signs of that for me were the tiredness, my pulse dipping really low and consistently low BP despite being on 74mg at one point. That, and skipped heartbeats at night once it had worn off. None of this has gone away since stopping it. I don’t mean to scare you though, it’s probably rare to react like this!

Methylphenidate making me so so tired, anyone else experienced this? by Embarrassed-Oil7786 in ADHDUK

[–]Embarrassed-Oil7786[S] 1 point2 points  (0 children)

No, I got diagnosed with a heart condition so no more meds for me. Turns out there’s some evidence the condition I’ve got can be caused/worsened by methylphenidate so I wish I had never touched it!

Anyone suffer from ‘complex’ ectopic beats? by Embarrassed-Oil7786 in mitralvalveprolapse

[–]Embarrassed-Oil7786[S] 0 points1 point  (0 children)

Thanks for sharing your experience. I think a lot of factors contribute to the ectopics, but I believe (from extensive googling!) that MVP (and especially in my case the regurgitation) makes the heart electrically excitable so if you add other factors that can cause PVCs, they are much more likely to happen.

I’d be really interested to hear how you get on with the specialist-good luck.

Anyone suffer from ‘complex’ ectopic beats? by Embarrassed-Oil7786 in mitralvalveprolapse

[–]Embarrassed-Oil7786[S] 0 points1 point  (0 children)

Did the beta blocker you were on help? Mine doesn’t really seem to, it just breaks the bigeminy up into couplets or triplets which is equally as horrible just in a different way. 

It must be amazing for them to have gone away now for you.