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avidita

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About avidita

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  • Birthday 09/29/1982

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  1. Hi: I would like to once again tap in our collective knowledge and ask your thoughts on the hyperadrenergic type of POTS. Here are my facts: *For past 2 years all TTT that I've done have shown POTS (pulse goes up, blood pressure stays stable). *This year I had a TTT where Blood Pressure went to 50/25 with pulse increasing as usual, so I have one doctor telling me I don't have POTS since my blood pressure plummeted on the latest test; and another telling me that sharp drops sometimes occur with POTS, so the blood pressure drop doesn't mean no-POTS. *My BP is always low, so I've never had orth
  2. I have reactive hypoglycemia (plummeted to 35 on the 3rd hour) and the endocrinologist did not find anything that could be causing it as far as excessive insulin production, etc. So said I was just very sensitive to carbs. A funny thing happened to me recently that you might relate to. I was taking a long walk and in stead of feeling progressively better, as I usually do when I walk, I was getting progressively worse to the point where I started getting the same symptoms I did right before I blacked out on my most recent and confusing TTT (where my BP went to 50/25 after years of normal BP on
  3. I am not quite sure about that statement. It might be true for some, but I got test happy when I was in Europe and other than a slight vit D deficiency (I stay out of the sun to ward off wrinkles) and slight Mg deficiency (only by 0.1, which is now normal), I didn't have any other deficiencies and I tested for a LOT of things. My B12 was actually twice the norm, not sure why . Also, as indicated by a lot of users above, many people gained weight after their diagnosis, so they must be absorbing nutrients OK....
  4. I am 5'7", currently 115 lbs after having to gain weight from 106. Before I got diagnosed with Autonomic Dysfunction, one cardiologist in Europe told me that am a "gracile type" and it was normal for people like me (read thin and tall) to suffer from lightheadedness, etc. Since my symptoms started I got from 120 to 106 over a period of time and was getting thinner and thinner, so I had to really pay attention to my food and make sure I eat enough calories. I generally feel better at lower weights, though. As an experiment, I tried to gain and maintain 125lbs beginning of 2009 and it was when I
  5. Thank you everyone for your replies! They do sound like they are very thorough. I will wait out my Mito diagnosis and if nothing comes up there, I will definitely make an appointment at Vandi. Wish I had started there. Thanks again!
  6. Hello fellow sufferers I am anxiously awaiting the Mito results from Dr Shoffner in Atlanta....In the mean time, since my diagnosis went from POTS to Autonomic Dysfunction due to my latest TTT blood pressure dropping to 50/25 on the 15 minute, I was wondering if it would be worth it to go to Vandi to shed some light on what type of autonomic dysfunction I am dealing with. Since I've already had a barrage of tests, I was wondering if anyone who has been to Vandi would tell me what tests they do there. I wonder what they do that puts their finger on a more specific diagnosis than autonomic dysf
  7. I want to add my two cents to this and I am saying in advance that what I say will be controversial, but it's my own opinion and I want to share it. I have had symptoms since Dec'06 that were improving until I had my molars extracted under full anesthesia in Dec'09. Since then it's been pretty bad. For a year the official diagnosis was POTS and my TTTs were showing stable BP and about 30-40 bpm increase in HR. This past month on another TTT I blacked out with a BP of 50/25 on the 15th minute and my Dx was changed to "autonomic dysfunction", which to me is a step back, since it's a more generi
  8. As we all know, mental fog and concentration difficulties come with the territory of dysautonomia. I have recently tried a supplement that I seem to be tolerating well that helps with that and I have friends swear they like it better than Adderall. It's called Piracetam, it's an aminoacid and it's the worst thing you will ever taste in your life. So if you decide to take a stab at it, either buy it in pill form or get a home pill-making kit and go that route. Turmeric seems to help many with the physical fatigue, btw. Just thought I'd throw that out there
  9. EDS, Marfan and Mito are genetic diseases that can be tested by a geneticist. However, EDS and Mito have different subtypes and each test is very expensive. I think the doctor should be able to tell which tests would be appropriate for you and based your family history and examination. Good luck!
  10. It is normal for your BP to increase during exercise and take some time to go down afterwards. In the long run, it should actually help lower your BP. Is the 130/90 what you get when you work out or soon after?
  11. @Mack's Mom Thank you, Julie! I know we all need to hear something encouraging from time to time. @nmorgen I have not been diagnosed with a specific type of POTS. I couldn't find anyone in Europe that could perform the supine/standing catecholamines blood test, but my blood pressure doesn't get high, so I am 90% that I don't have the hyperadrenergic type as that is a very good indicator. Like you I feel bad when my pulse is in the normal range (low for us, but 80 moving around is normal for normal people). It's too bad D-r Zia didn't bother to categorize my dysautonomia, he seemed so happy wit
  12. I had a food allergy blood test, not sure how reliable it is, but from experience I have narrowed it down to this: * Chocolate (or sweets) - instant vertigo and nausea attack. Rarely fails to hit me * Soy - I was a soy nut for years, but after the blood test I thought back and found that some bad spells I've had were after ingesting large quantities of soy, so.... * Nuts - the test only showed moderate reaction to those, but I know almonds make me dizzy * MSG - that is a no brainer. The Chinese place next door claims they don't use MSG, but I got two vertigo/nausea spells right after eating t
  13. Thank you for your replies!!!! @sue1234 My insurance allows me to see any specialist that is in the network. All the tests that I have had done so far were requested and paid by me in Europe based on my research. The Euro doctor didn't even want to perform the first TTT because he thought I had nothing and after I begged for it (on top of paying out of pocket for it), he did it and 5 minutes into it, he was telling his med students that they are now witnessing POTS . So, in Europe, I found out I had Mitral Valve Prolapse and POTS, plus I developed irregular heart beat to go with my body jerks.
  14. Hello Everyone! It's been a long time since my last post. I was on my way to Europe for some tests. Basically, they ruled out anything autoimmune going on and re-confirmed my POTS with a new TTT, 24hr blood pressure and heart rate holter. On my way out of a d-r's appointment, I had severe chest pain and was rushed to the ER with suspected pneumothorax, which was never confirmed, since my X-rays came out clear. I was kept in the hospital for 3 days for observation. I was very stressed and in the middle of all this started getting body jerks when trying to relax and sleep. I literally moved the
  15. It is normal for your heart rate to initially go up upon standing. The problem is if it stays that way. You seem borderlining. I guess a specialist will be able to tell you more based on your symptoms, etc. Also depending on the activity you are doing and your level of fitness the heart rate may vary considerably from person to person. Someone very fit will have a totally different HR when walking than somebody who isn't. That is why the diagnosis of POTS is based on TTT where you stand absolutely still for a long period of time. I was instructed to not even talk on mine. I hope you get answe
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