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About lukgar1

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  1. Hey guys, How were you tested for leaky gut syndrome? My integrative medicine doctor gave me a kit she said with some sort of sugars that shouldn't be in the urine. Did you do the same thing? Hope to hear from you soon.
  2. I'm sorry but this just doesn't sound right to me. From what I understand, you should be off your medication if you are doing a tilt table test and holter. What's the point of testing you if the medication masks your symptoms. Does the SSRI help with the fainting? And pre syncope episodes? In the Changes video on you tube they explain the reason ssri works is not because of an anxiety/depressive disorder but rather it affects the same neurotransmitters that are misfiring. I just saw a neuro on autonomic disorders and he scoffed at the diagnosis of anxiety. In my opinion the anxiety is a natural reaction to your body taking on so much physical stress trying to maintain homeostasis, hence your inability to handle external stresses as you had previously. Well good luck, I hope all goes well!
  3. My experience with lexapro was terrible. I took 20mg on day one and felt nauseas, fever, dilated pupils, elevated heart rate. I was rushed to ER where they were in disbelief my HR would not come down for days. I was admitted and here I am. It's what lead to my diagnosis of POTS. The same medication doesn't work for all of us. My doctor said he suspects serotonin syndrome so SSRIs are out for me.
  4. Hey Ipad, I experience reynauds syndrome and my feet and hands can turn blueish purple. They also get very cold. You might want to have someone check your blood pressure after ten minutes, maybe there's some Orthostatic hypotension coming into play. For POTS you need to have a heart rate increase of 30+ upon standing so you should be checking your pulse right after you stand.
  5. I was curious if anyone who has been mostly in bed or sedentary been tested for this? I've been in bed since last summer. I do get up from time to time but I have never been this sedentary in my entire life. Still not a huge relief in symptoms and everytime I try doing a little more I'm out of it for the next few days. I get pinching pain sometimes so I'd like a little peace of mind in that regard.
  6. My insurance is pretty good too and has payed for everything thus far(knock on wood). I'm wondering whether or not it's because he doesn't deal with POTS much? Do you have another diagnosis? I might ask my electrophysiologist about it and see what he says.
  7. I feel much better knowing this is common amongst us POTSies. It's no fun going to the bathroom so much. Funny story, I went to see Titanic last year with a friend and got into an argument with some pre-teens over blocking their view when I went to the bathroom. I couldn't help it! Couldn't find any end seats. Have any of you had reoccurring bladder infections? I've had a few. Thanks for the responses.
  8. Has anyone been able to do cardiac rehab? My doctor said insurance will not cover it for a diagnosis of POTS. Both he and I feel it would be beneficial but costly. Anyone have experience with this?
  9. Has anyone here seen Dr. Barboi? He works over at Rush hospital in Chicago. I'd like to rule out any neurological diseases associated with dysautonomia as I have some neurological type symptoms that make everyone scratch their head(I see that many of you have some of these symptoms too). Is there anything I should be asking? Any tests that you have done or find helpful? I'm really trying to find out what triggered my POTS. When it started I was sick with what I thought was a long lasting cold for months, was on a low salt diet and to top it off was hit on the back of the head with a metal parking gate.
  10. Thanks everyone for your responses. Yeah I've been going every thirty minutes to an hour. I was thinking of stopping at whole foods for some electrolyte water. Thanks for reminding me of smart water, I almost forgot.
  11. I also found a good snack for some salt is sea salt popcorn. It's healthy, low calorie if you're watching weight, full of antioxidants too.
  12. I find that I've become very sensitive to chemicals. So I like to eat organic prunes, apples, bananas and yogurt with blueberries and flax for some omega-3. I find that when I eat foods with additives my symptoms get worse. Soy was a big no for me. Oh and I used to eat dark chocolate until I realized it was affecting my heart rate more. I don't mind though because it's all delicious.
  13. Thanks everyone for your responses. @ Tobiano and Monstrosity I also had jaw chattering and difficulty speaking, and it was at rest. It is very uncomfortable, have you noticed if anything makes it better? How long have you been dealing with this?
  14. I was curious about how often everyone urinates? My potassium, magnesium, and sodium are slightly low and I'm a little concerned with how often I urinate drinking only 8 cups of water a day that I might be losing too much electrolytes. I eat bananas and prunes. Anyone have the same issues?
  15. I also have issues with nystagmus, imbalance, sensitive hearing, vertigo and central sleep apnea. What was the official diagnosis of your MRI? I know the definition of Chiari says you need to have a tonsillar ectopia of greater than 3mm. Mine is only 2.4mm so not sure that's of any significance.
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