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Everything posted by Aimes

  1. This study might interest you. It found that a good amount of POTS patients had rapid gastric emptying. http://www.ncbi.nlm.nih.gov/pubmed/25483980
  2. An increased mean platelet volume can be a sign of B12 Deficiency. I had an increased mean platelet volume for years before Mayo Clinic finally caught that it was due to extreme B12 Deficiency (even though I eat meat regularly).
  3. I've had two babies while being diagnosed with POTS and it wasn't a cure for me. I felt terrible during the pregnancies and felt amazing after! I literally felt the best I've ever felt in my life (I still had POTS, but it was much milder). Unfortunately, shortly after my 2nd baby I had to have my gallbladder removed. That surgery sent my body into a downward spiral! I wish we could all be the same so we could know for sure how a pregnancy would affect us. Just make sure you have good doctors you can talk to a lot!
  4. I delivered both of my girls vaginally. The only thing I had an issue with was the epidural. It made my BP bottom out, but was fixed quickly with some medication. I did really well during labor and delivery. I was a little symptomatic after but I'm sure I would have been with a C-Section also. I was mostly glad to not have to go through the recovery process of a C-Section. Having said all that, we're all so very different. Continue to have conversations with your doctors and do what you're most comfortable with. Good luck and congratulations!
  5. I've had this same thing happen. I've always called it my "Self-Combusting Episode". My skin gets hot and red and I usually start shaking and shivering. I went to the ER on once and they kept taking my temperature because they couldn't believe I could feel that warm and not have a fever. Unfortunately, I've never gotten answers as to why this happens or what it is. For me, it usually happens in the evening or as I'm trying to fall asleep. I've been given antibiotics because they thought red, warm skin meant an infection. I knew it was just one of my weird POTSie things. Luckily, they only happen now when I'm having a bad flare. I find that cooling off helps. I either go out into the cold air or even lie down on the tile bathroom floor. I hope he finds relief! Sorry I'm not more help but at least you know he's not alone!
  6. I do the Paleo diet and notice improvements. Grains are a huge problem for me and cause me to get tachycardia almost instantly. I can cheat on the dairy some, but I'm careful with it because it can make me nauseous. It's not a cure by any means but it has been helpful! :-)
  7. Thanks for sharing! I have B12 Deficiency even though I eat meat regularly. I've always felt that malabsorption is a part of my problem. I eat a strict diet with very low sugar and no processed foods. It helps but isn't a cure. :-)
  8. Hi Bigskyfam! I'm from North Dakota so we're practically neighbors! I've had POTS symptoms since I can remember and was diagnosed almost six years ago. This forum has been a huge help to me. It's so nice having support from others who understand! :-)
  9. So I just read a very interesting book about a lady who controls her autoimmune/Dysautonomia/MCAD symptoms with diet. In her book, she talks about Kefir (the yogurt-like probiotic drink) and mentioned that it's a mast cell stabilizer. She cited a study and sure enough, that's what they found. Did anyone else know this or am I just behind on this Kefir stuff? Has anyone tried drinking Kefir daily? Did it help? If anyone is interested, the name of the book is "Autoimmune: The Cause and the Cure" and it's written by Annesse Brockley and Kristin Urdiales. It's obviously based on theories but they do cite over 300 studies so it's an interesting read. Here is a link to the Kefir study. http://www.ncbi.nlm.nih.gov/m/pubmed/22293347/
  10. I'm so sorry you're feeling so poorly. I often feel the same way with doctors. Test after test and no answers. Just keep pushing and fighting. It's amazing how much the body can heal itself. I obviously can't say things will magically turn around for you, but they somewhat have for me. It's been a slow journey with many set-backs but a year ago I couldn't get off the couch or eat a bite of solid food and now I'm able to do a lot of things. My grandfather had a similar episode that lasted four years. He had to stay in a darkened room during that time because any stimulation would trigger his symptoms. He was a teenager and I remember him telling me he would feel so envious of his older sister because she was living life and he was trapped. Somehow, his body pulled through it and he lived a very long, mostly healthy life. I know we're all different, but I hope my stories can help. Stay strong and keep reaching out! My thoughts are with you!
  11. I first saw Dr. Goodman when he was at Mayo in Rochester. This past April I had a really bad flare of symptoms and decided to go to Mayo in AZ so I could continue with Dr. G. He is amazing and thorough. My Rochester experience was a really great one. I saw a team of specialists and that Clinic is unlike anything in the world. In AZ, I only saw Dr. Goodman but he ordered the same tests that were done in Rochester and it was a more relaxed atmosphere. My follow up care has also been fantastic. I call and visit with his nurse, Janie, every couple of weeks and they are always very prompt in returning my calls and answering my questions. Basically, I'm not sure about initial work up as I didn't have that done in Arizona, but I think Dr. Goodman is one of the best!
  12. 27 and have had symptoms as long as I can remember.
  13. You may also want to ask a doctor about Myasthenia Gravis. It's an autoimmune disease that attacks the neuromuscular system. It can cause difficulty swallowing, along with eye problems, breathing problems, and weakness in the extremities. So many symptoms overlap in these conditions, it's difficult to find a correct diagnosis. Good luck to you! I hope you find answers!
  14. I have suspected EDS and have had this same issue. I was awake through one entire surgery but couldn't feel anything. I remember the entire thing though and visited with the surgeon throughout the procedure. Kind of a strange experience! Then, with my last surgery a couple of months ago I was asleep instantly and don't remember a thing. My brother has also stayed awake during a surgery.
  15. I just dug out that echo from 2007 and I actually have "trivial regurgitation" in all of the valves. Dr. Shen (at Mayo) didn't seem to think it was serious enough to worry about. I didn't even remember that the echo showed regurgitation in all valves. It's a little surprising to me that doctors don't take this more seriously. It's something I'll push to have monitored. On a positive note, my maternal grandmother has had a faulty valve (not sure which) for most of her life and its never gotten any worse. She is now in her 70s and has had symptoms of severe EDS since her 20s (not diagnosed).
  16. I have mild aortic regurgitation and suspected EDS and MCAD. I started the MCAD cocktail three weeks ago and feel like I'm making some small improvements. As far as the aortic regurgitation, at this point mine isn't serious enough to worry about. Thanks for posting this! Very interesting!
  17. Janet, I actually really enjoyed going to Mayo Scottsdale. I'm so glad I started my journey at Rochester because there really is no comparison. It's a well-oiled machine. I started with a cardiologist and left with an entire team of specialists. But, Scottsdale was a much more laid-back atmosphere. More of a small-town clinic feel and I am so lucky to have Dr. Goodman on my side! It was great to have a "vacation" with my husband and he had some family down there so it was fun to see them. Good luck with your Gluten-free diet. I'm not completely gluten-free but always notice I feel better when I avoid it. I also agree about the alcohol. I can't tolerate it now which is unfortunate. I was never a heavy drinker but did enjoy some wine or beer every now and then. Now, I just have a sip of my husband's to satisfy the craving.
  18. Janet, I did just return from my fourth trip to Mayo Clinic. The first three visits were in Rochester and at that time my digestion was not an issue at all so we focused on the heart. This last visit was in Arizona (because Dr. Goodman moved) and my stomach was working perfectly that week. Go figure! It's probably the only week in the last six months that I didn't have nausea or that "brick in my stomach" feeling. Dr. G. suspects MCAD might have something to do with it so about a week ago I started the meds for that. Hopefully, the meds with some dietary changes will give me some relief! :-) Thank you for your kind words and insight!
  19. It's so interesting to see how different we all are regarding food intolerances. I've had a hard time eating again this week and last night I even had to resort to soup. I've had so much soup this year, I should invest in Campbell's! Haha! Janet, I'm almost positive I have gastroparesis. Unfortunately, the GI Specialist I see doesn't believe in the accuracy of Emptying Scans and says there is not enough knowledge about stomach emptying issues. According to him gastroparesis is extremely rare. In my opinion, it's probably rare in the general population but rather common among POTS patients. It's even more frustrating because this particular doctor's sister has POTS, so I had hoped he would be more open-minded. My digestion troubles seem to come and go with no warning or triggers. I'm battling them right now but by next week I might be fine... It keeps me on my toes I guess! :-)
  20. Wow! Thank you all for the responses and input. I've never handled carbs well, which is unfortunate since I'm a carbaholic! I don't have celiac but too many carbs makes me feel tired, tachy, and like I have a brick in my stomach. I mostly want to learn to avoid processed foods and things with additives. When I had this last terrible flare, I had to avoid solid food. It was strange. Even one bite of solid food would send my body into a fit. So I had only broth and jello for about a month. Then I slowly added in soup, bananas, applesauce, and finally worked up to solids again. It was almost as of my stomach forgot how to work. I'm muh better now but more cautious about what I eat and I would really like to try to implement some better eating habits! I soooo wish I had the energy for a garden! I live on a farm so we already eat our own beef and know where it's been and what it's been exposed to. I just wish we had that garden for fresh fruit and veggies, too! :-)
  21. I also saw and liked Dr. Fealey. Good luck to you!
  22. I would love to know what diet changes people have found to be beneficial to them. I've heard people discuss a lot of different options (Gluten free, dairy free, vegan, vegetarian). I'm researching and thinking Paleo is probably the best option for my family. I'm just interested to hear everyone's experiences and opinions on this!
  23. Thanks for the replies ladies! I'm hoping these meds will give me some relief, especially from the nausea! I'm going to start them Saturday. Bren, I understand about the chicken and egg thing. When my POTS was really bad as a teen, my joints were terrible. They easily dislocated and were painful. Then everything calmed down and I had NO joint problems at all! Now, with this flare I'm having trouble with my knees and hips and arthritis in my hands. It's all connected somehow but I can't decide what causes what. My uneducated guess would be an autoimmune issue that impacts the connective tissue, but who knows? On the catecholamine test, my norepinephrine was 145 supine and 536 standing. Not even close to Hyper POTS criteria. That's why I'm a little baffled. I have all the symptoms with major adrenalin surges and high BP during episodes, but don't classify as Hyper.
  24. Does anyone here have Mast Cell Activation Disorder but not Hyperadrenergic POTS? I've always been fine on my catecholamine tests, but have all the MCAD symptoms. Dr. Goodman at Mayo agrees so this weekend I'm starting the cocktail of Allegra, Pepcid, and Cromolyn. I just feel like I don't fit any of the POTS "molds" if there is such a thing! :-) I've only heard of people having MCAD if they have Hyper POTS and usually EDS. I do have hypermobility and extremely fragile skin that doesn't heal well, just no Hyper. I guess I'm just a mystery! Haha!
  25. Yum! Beer and bacon! This is quickly becoming one of my favorite conversations! Ha! I sooo wish beer and bacon could be my cure! I agree that it mostly takes time. My teenage years were such a struggle, then I hit my 20s and nearly forgot I had POTS (until this flare after gallbladder surgery). Overall, I feel like I was much worse during my teens. It was like one, big flare that wouldn't end. Somehow I kind of came out of it. This flare is worse than anything I dealt with as a teen but my body also went through a lot this year! I had a baby in September and then surgery in December, so it's not surprising that things would act up so much. I have high hopes that it will all calm down again with time! It also helps me to eat small, frequent meals and try to stay somewhat active. It seems to go downhill fast if I slip into the bedridden zone!
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