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lewis

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Everything posted by lewis

  1. Saw my cardiologist, she said I could use my beta blocker as needed.
  2. Interesting. I hate talking and now I know why. I haven't talked to my wife on the phone in years. I've never noticed the talking. However I have noticed my heart rate speeds up with every breath in. Not sure if this is normal or not. Sometimes it doesn't speed so my suspicion is it's not normal
  3. Thanks for the info. I like to hear others people experienced with this crazy stuff. I exercise a lot as this seems to keep everything more in balance. Not sure if it brings my sympathetics down our boosts them cause they are lazy. Either way if my body is sore I feel more normal.
  4. My SVT has to be related to dysautonomia since I never had one without the other. My ectopic beats don't happen every time I do physical activity. Two weeks ago I went hiking and had them the entire time. Last week I strapped 50lbs of water to my back and hiked 5 miles. I did this twice in 2 days and didn't have one ectopic beat or svt. I'd love to know what brought me into a flare so I could avoid it. I have an appt. With my cardiologist on wed and will see what she says.
  5. Thanks for the info. I havent tried clonidine so I will look into it.
  6. Are you staying hydrated? I feel the best after a good hard workout and I think it's cause of all the liquid I drink.
  7. I too have this same burp Afib or pvc. Sometimes it happens when I burp, sometimes it happens until I burp then it goes away. I would have it happen 30 times a day until I did the whole 30 diet and now maintain a mostly ketogenic diet except for lower carb vegetables. I may only have one burp episode a day if that. I too have a small HH That had only been seen on half of my endiscopies. If you have to wait a year or are paying out of pocket to see a neurologist, make sure It's one that specializes in dysautonomia other wise you'll leave frustrated. I went through 4 nuerologists and 4 cardiologists before i find one that specializes in dysautonomia. It was a long road that led to know where since they never came up with any reason or treatment. So I exercise alot and eat strict and I have most of my life back besides an occasional flare.
  8. I think it's categorized under the svt and pc's although my heart rate doesn't get above 135. Just what the doctor has told me. Done the holter monitor 3 times and it never showed a thing even though I had experienced it (do those things even work?). I'm pretty sure it's from sympathetic over activity Or under activity . I do know my norepinephrine levels get high too over compensate for my nervous system not constricting my blood vessels. The high levels cause my heart to have the arrhythmias. The bb helped this but I hated the side affects.
  9. Anyone know of something I could look into for the occasional arrhythmia flare? I don't want to go back on a bb and want something I could use as needed. It seems to flare up at the worst times when giving it rest isn't convenient. I've only tried metropolol (didn't seem to do anything) and propranolol and didn't like the side effects of that one.
  10. I did. I did the strick whole 30 for 45 days. I'm not completely whole 30 still but definitely in ketosis. I follow mark sisson primal diet which is a little different than whole 30 focusing on low carbs. The only differences off of whole 30 I introduced is cacao (86% or higher), some infrequent natural sugars ( brown rice syrup did not agree with my nervous system as one of them) and I use occasionally grass feed butter and whey isolate protein. I've also made a few recipes with tapioca flour/starch as it's the closest thing I've found that acts similar to real flour but I am careful. I over did it one time and woke up the next day with a too much carb hangover. The primal diet also allows some cabernet savignon wine and so I tried that and had tachycardia return for 3 days. Also I drink diet Pepsi (I'm pretty sensitive to everything, it however doesn't bother me) which isn't whole 30 or primal. Its just about my only cheat. I usually eat the same thing everyday.
  11. That's great! I've done it over 90 days and it's still helping me.
  12. Since being on the whole 30 diet since the beginning of March my fatigue and energy levels have gone from a roller coaster to being steady. To me it's really weird and those around me notice that I look like I can't get fatigued or run out of energy. The only reason I quit at the end of the day is because I get sleepy but my energy never stops. Yesterday my fitbit said I did 25000 steps and I never went for a walk. I built a deck, took a load of bark to the dump (that I had to shovel), dug out the boulders on the side of my house and worked on my boat. Going full speed 6am till 10pm and never stopped to rest or take a break. So to answer your question I eat mostly omega 3 eggs, vegetables, nuts.
  13. I don't think it was solely the diet. I have to give some credit to excersize as well. I started slowly exercising doing what I can and working my way to getting stronger. But the diet really made a huge difference. My symptoms I thought were pretty bad but not as debilitating as others on here. I tried to eat fairly healthy before but was definitely addicted to sugar and simple carbs.
  14. Robin sorry I didn't reply sooner. I do have some advice for you our anyone that wants to try it. Take a week or two before you commit to wean yourself off carbs. Going cold turkey is really hard. It will be still hard even with weaning yourself off. The first two weeks or so if you feel you need carbs then research and eat some of the vegetables that are high in carbs such as sweet potatoes or squash. I don't have cravings for such things any more which is weird cause I've always been addicted to sugar. Just listen to your body. Also I'm completely off propranolol which I thought would never happen so I feel even better cause I no longer have the side affects it gave me like parathesia. I worked 8 hours in the heat today building a deck with no salt pills and only one bottle of water. It felt like I accomplished something just making it through the day remembering the days I could barely walk when it was hot outside.
  15. Yes I'm still doing great. I've been tapering off my propranolol as I feel like I don't need it anymore. My life feels like I'm almost back to normal although I'm still not running. I'm pretty use to this diet now and don't feel I'm missing out on anything.
  16. May not be too helpful but the university of utah a has a neurologist that specializes in dysautonomia.
  17. Yes and anytime I eat anything with gluten my heart would race. I heard an explanation why it affects the nervous system the other day and will dig it back up to get the specifics. I highly recommend doing the whole 30 diet for the 30 days, however I'd spend a week weaning yourself off carbs before hand or it will be really hard. I didn't think sugar was really affecting me but I feel the best I have in years on this diet. I am almost done with the 30 days and can introduce other things slowly to see how they make me feel. I plan on staying away from fructose and getting any sweetener from stevia or brown rice malt syrup which is purely glucose. I'll continue to follow mark sissons primal diet as it is a little less restrictive than the whole 30.
  18. I will look over at Mark's daily Apple, thanks.
  19. I hope my mood recovers. Haven't had any refined sugars or grains for 35 days and it still hasn't recovered yet. Going to slowly add a few things in to see if I can figure out what bothers me the most. Going to start adding some sugars like rice malt syrup and stevia but plan on sticking with the primal diet and staying away from grains and limiting refined sugars.
  20. When I first started I felt awful during and after any excersize. I always start with a salt pill and a bottle of water. I lift weights and use a row machine so after every set I drink a whole bottle of water. Little by little I've worked myself up to being able to feel good while working out and more actually enjoy it. Also it along with my diet has completely changed how I feel. I am really close to feeling how I felt before all this came on.
  21. It's been touched on here a little bit I found but I just wanted to share my experience and see if anyone has has any similar experiences. My sister got me onto the whole 30 diet and I learned alot from there site as well as mark sission's primal diet. I'm a couple days away from the end of whole 30 and it has really helped me. I lost 25lbs in the process and also lost the 20 pvcs I was having a day. My nerve pain is minimal and heart is more stable. I'm even entertaining the idea of weaning off propranolol. My ortho static intolerance has faded and some days is gone. It is weird though I'm not as happy on this diet. I guess sugar makes me happy. Anyone else tried the whole 30?
  22. Ya I feel worse when sleeping in. Always gives me that hungover feeling. Excersizing usually brings me out of it.
  23. I've seen 5 different cardiologists and the only one that was helpful was the one that knew about dysautonomia. I still use her as my primary contact when questions come up only because she is willing to help. I feel my autonomic neurologist is more knowledgeable but is less helpful due to being over loaded with patients.
  24. I had a similar but different experience. The first TTT take my cardiologist have me I failed and felt awful and had to be given an iv of fluids. I get an appointment to have a TTT done while doing autonomic testing and she said everything was within normal ranges and that they didn't know what I was feeling but everything appeared normal. Pretty frustrating. I have improved though on her recommendation to excersize and stay hydrated.
  25. Sorry I skimmed over your results pretty quick. 6 months is way too long to get a return appt. To go over the results. My doctor met with me at the end of my tests and we went over the results.....
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