Jump to content

A Combination Of Mild Cases Of Mitral Valve Prolapse, Connective Tissue Disorder, Dysautonomia, And Hyperhidrosis?


incog
 Share

Recommended Posts

Hello, everyone! I read a lot of articles on the website, but decided to post here because I hope that somebody could give a more personalized advice or direct me to some other great resource.

It seems that I have a combination of very mild cases of the following: mild cases of mitral valve prolapse, connective tissue disorder, dysautonomia, and hyperhidrosis?

1. Mitral valve prolapse

I have been diagnosed with Mitral Valve Prolapse about half a year ago. Aside from that I'm health 27yo guy, training couple times of week, mostly eating paleo.

I've been suggested by cardiologist to take fish oil + magnesium + small doses of aspirin for limited time.

Which is not very helpful as I've been supplementing with fish oil for a long time, started magnesium about half a year ago (now trying to all -ates: citrate+orotate+aspartate) and as I don't really want to take aspirin.

I also supplement with a strong multi (including folate, K2, D3, etc, etc) + additional D3.

I also cycle creatine and sometimes L-glutamine & Whey. Several of months ago I also started experimenting with L-Carntinine / Acetyl L-Carnitine and CoQ10.

So, typical supplements recommended to those with connective tissue dysplasia are:

Magnesium, L-carnitine, Q10, potassium orotate (but according to my cardiologist it will have negative effect in my case).

I experiment with these now.

Somewhat more controversially beta-blockers (don't want to take them), inosine, SSRi, Corpus vitreum and Growth Hormone are recommended also.

The problem is that there are so many variables it's nearly impossible to come up with exact day-to-day plan of supplementation with exact dosages as most of these supps are probably useless to me. I would be really greatful if you could suggest something or maybe recommend a completely different out-of-box approach.

Also, interestingly enough, according to Curetogether.com (which has 600+members reporting their experiences with MVP), 5 most effective treatments are:

1. Avoiding caffeine; (always loved it, but probably should give it a try)

2. Air conditioning; (love it!)

3. Diet modification; (which exactly, I wonder?!)

4. Avoiding stimulant herbs (which exactly, I wonder?!)

5. Benzos (xanax, klonopin) (don't want to use any hardcore meds without a strong need)

_____________

All other diseases mentioned here are only assumed, not diagnosed. I have minor symptoms that make me think I'm likely to have

them. Here is the list.

2. Connective tissue dysplasia

I've researched on the topic and discovered that this issue is usually related to connective tissue dysplasia which is the problem with collagen synthesis.

I think this might be my case, as I also have a mild version of pectus excavatum (pigeon chest - however, it is mild, so it doesn't influence organs' or hearts' positions) and non-existent earlobes. As funny as it might sound, I can also twist my tongue. All the above-mentioned are associated with connective tissue disorder.

Other symptoms are:

- sometimes I get a brain fog with no particular reason

- mild anxiety/irritability from time to time (which is very irritating as I manage my emotions pretty well and I am usually upbeat, but I hate it when I'm not feeling well for no reason at all)

- very very rare occasional mild heart palpitations before bed (I just can feel it, but it doesn't prevent me from falling asleep quickly)

But aside from that, I don't have any manifestations of connective issue problems: my joints have been perfect my whole life.

Symptoms certain seem to come and go. Sometimes I have weeks in great mood and of great performance, but sometimes I feel "down" several days in a row. What usually helps best in this case is getting lots of sleep and working out.

_____________

3. Dysautonomia / Hyperhydrosis

It seems that the only Dysautonomia-specific symptom I have is that I sometimes get cold hands (only hands), and sweaty armpits for no reasons.

Also, I sometimes get sweaty hands which happens especially often when I travel. It's sometimes also accompanied by clogged nose. This is very irritating. It's also confusing because i love travelling and have no fear of plains whatsoever.

_____________

Lifestyle, background

Overall, I have a very active lifestyle. I have a demanding full-time job in a multinational corporation, run my own entrepreneurial projects, on the side and train hard (weightlifting) about twice a week, do yoga about once a week / once a couple of weeks.

I sleep about 8.5 hours on average (it's not time in bed, but the actual sleep I get, measured by Zeo): about 7-8 on weekdays and about 9-10 on weekends. Yes, I need a lot

Basically, I enjoy having an active lifestyle and want to be able to maintain it. I usually feel the greatest after a very tough workout or exhausting yoga session (Ashtanga yoga).

I eat a kind of high-carb version of Paleo diet (lots of meat, fish, veggies, fruits, berries, potatoes, rice, etc).

All my bloodwork is fine. Not only typical things (blood sugar, etc), but also hormones (Testo, free testo, estradiolm progesterone, SHBG, T3, free T3, T4, free T4, insulin, adreanaline, nor-adrenaline, cortisol, serotonin, growth hormone).

_____________

Questions:

1. Which of the typically suggested lifestyle modifications, supplements and dietary changes are more/less likely to be relevant in my case, based on you experience? I really want to manage it by myself and naturally. So this is the THE MOST IMPORTANT question.

2. Although, it's often recommended to quit coffee to those with MVP I kind of hesitate. As I love it and I love all the health benefits associated with it. I do limit it though. I have not noticed any particular dependency between the amount I consume and how I feel. Do you think it might still be worth it in my particular case.

3. Can you recommend a doctor that can be helpful in my particular case (who specializes in the things I mentioned)?

4. Is there any chance to get a consultation with some great doctor online (via Skype for example)? The problem is that I'm living outside of US. Although I might consider travelling, it would be great to talk to do all the blood-work locally and get consultation remotely.

5. Should I care seriously about getting the proper diagnosis for other things aside from MVP taking into consideration that my symptoms are mild? What would be the optimal way to go about it?

6. What would be the best way to customize my approach? In other words, figure out what particular connective tissue problem I have, what exact type of collagen, etc?

5. Can you recommend great books/blogs/articles?

6. If you have a similar set of symptoms, should we probably speak in person via personal messages to share information?

7. Am I missing anything important?

Link to comment
Share on other sites

Hi incog.

I can only speak for the dysautonomia with the MVP. I have POTS and MVP. When I was diagnosed with MVP I was 19 and was told it was mild. I just turned 25 and was told last week I need valve repair surgery because it has gotten much worse. My cardiologist essentially said there's really nothing a person can do to make their MVP better and nothing they can do to prevent it from getting worse other than living a healthy lifestyle. Most people with MVP lead normal lives and it is benign,but I am told my POTS is making my MVP worse and vice versa. I would definitely make sure your cardiologist is on top of your MVP and orders echo-cardiograms every year or even more frequently to monitor the MVP. I have been on benzos for longer than I've had POTS or been aware of the MVP and it seems to have done me no good since I have gone from A-OKAY to needing heart surgery in a matter of 6 years. I would just suggest staying on top of it.

Have you been officially diagnosed with dysautonomia?

Link to comment
Share on other sites

Thank you very much for a response, I appreciate it a lot!

I don't have POTS and MVP seems to be light. My cardiologist suggest that I don't worry about it, but come back in half a year or a year to do all the tests again to be on a safe side.

I haven't been diagnosed with dysautonomia though. They usually go hand in hand, but as I said I only have mild symptoms (such as cold hands for example) that lead to dysautonomia-related pages usually when I try to Google them. I don't think that I really have it as I don't get any other more serious symptoms described in this and other websites and as mine are too generic to be sufficient for a diagnosis.

But what is most interesting is this connective tissue disease which seems to be an underlying condition for MVP and the one I was born with. However, as mine is again much lighter then typical Marfan or Ehlers-Danlos and symptoms are very different, I wonder whether I should find a very good doc who specializes in this kind of things to get a more customized approach. Usually it is considered treatable, but not curable. But I suppose that treatment is highly dependent on a certain situation.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...