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    Canada, Quebec
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    For now, trying to get well..!

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  1. Thanks all for the responses, i appreciate it. My PCP diagnosed me today when i showed her my TTT. I even printed the diagnosis criteria from dysautonomia international etc. I think she was annoyed a little bit with me. I'm still sad that i have to "twist arms" at doctors. They make me feel like im looking for drugs or something, while the only thing i want is to know what i have and feel better, thats all. Anyway, now that i have pots, im not sure where i should start. Guess ill read the stickies. Water, salt and exercise is the basic, right?
  2. Grrr im sorry you're having the same response as i do. I have an appointment with my GP tomorrow and intend to defend my point with the results from the TTT and diagnosis criteria that i printed off of websites. I hope she believes me. I hope as well that you find a doctor who believes you. Nothing is worse than feeling like trash and no one listen to you
  3. Hello all. Sorry for not being here a lot lately, I've been busy with life problems. Ill keep this short. Ive been feeling off for 3 years with on and off symptoms. 4 months ago, i was put on medical leave because my symptoms increased and i couldnt drive anymore. Ive known POTS for about 2 years now and really pushed for more testing that way after the cardiologue ruled out heart problems. My problem, is that i had a TTT yesterday and it was negative according to the autonomist specialist. But he gave me 2 bad reasons for not believing him : 1) You dont have POTS because your blood pressure did not decrease. And even if i (the specialist) would diagnose you with it, i cant really help you because you dont faint and the only thing i prescribe is fludrocortisone, salt and water. 2) Your heart rate didn't really increase that much during the test like my other POTS patients, and when i reclined the table, your heart rate stayed high. Therefore, you dont have POTS since you didnt recover However, this is false. First, the criteria for a POTS diagnosis (as far as i know) is either a rise of more than 30bpm upright, or an increase higher than 120bpm, WITHOUT blood pressure change. (Dysautonomia International, Vanderbilt, Johns Hopkins). And second, there ARE treatments for POTS even if your blood pressure doesn't decrease. I asked for a copy of my TTT and got it. Here are the results : Before tilt (30 minutes laying down) : 90 bpm, 155/83 1 minute after tilt : 129 bpm, 158/90 2 minute after tilt : 121 bpm, 164/101 3 minute after tilt : 123 bpm, 171/86 7 minute after tilt : 112 bpm, 163/92 10 minute after tilt : 113 bpm, 157/100 12 minute after tilt : 119 bpm, 156/96 15 minute after tilt : 118 bpm, 160/95 17 minute after tilt : 125 bpm, 154/98 19 minute after tilt : 125 bpm, 171/97 After tilt laying on the table : 121bpm, 159/87 What are your thoughts on all this? He suggested i have anxiety and "anticipate" me standing. This is false. Im not scared of frickin standing, i feel out of breath after a flight of stairs, exercising is possible but hard, im dizzy all day, i have shortness of breath, im cold then hot 1 minute after the other, sometimes eating cause me to have nausea etc... Im not creating all this. I had the best possible life before all this happened. Why would i ruin it and be anxious about it?? Should i just contest and be my own advocate or just quietly stay in a corner and suffer in silence?
  4. What type of magnesium is used in the product? Usually there's a compound with it, right? Like citrate.
  5. @JaneEyre9 I think its a matter of philosophy then. I have severe food/medication allergies and i consider that to already be a criteria to not have children. If you add dysautonomia to the mix, thats a 100% clear no from my end. But again, my opinion and my philosophy. I'm just not sugar coating it.
  6. Without an ssri right now, id pretty much be in a corner of my room fearing I'd die. It helps a lot, in my case.
  7. Maybe this will be an unpopular opinion, but i think that if you're affected by something as bad as dysautonomia, you shouldn't have children. But thats my opinion, and ultimately it is your choice.
  8. I do the same as pistol. I do have left arm pains too. But ive been checked a billion times so no heart attack or anything.
  9. Makes sense. Thanks again for the info, i'll make sure to bring it to my doctor on my next appointment :).
  10. The only thing scaring me away from trying cbd or thc right now is my clonazepalm that i was forced to take daily while waiting for my specialist. I just simply can't function without it atm and my anxiety is at an all time high.
  11. I know its going to be a classic, but have you tried ginger?
  12. To the best of my hypochondria knowledge, i had this since my teens and my father had this for a very long time. Its probably genetic but not something to really worry about in absence of pain, etc.
  13. “am I going to die?” types of feeling describe me 24/7
  14. Except this is normal in many healthy patients with no dysautonomia? My father included and he does just fine. I do the same (for example, if i put my cellphone on my belly it will pulsate with it) but never really thought anything of it...
  15. I do not recommend the cc charge back way if you want to hold a relationship with that doctor.
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