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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Poor Man's Tilt Table Test

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Poor Man's Tilt Table Test › Reply To: Poor Man's Tilt Table Test

February 8, 2012 at 11:42 am #1730
PalominoMorgan
Participant

Time to find a new cardiologist? Just kidding, sort of. If he doesn’t think that you passing out 3 times while wearing a Holtermis cause for concern… Also the results above are not unlike what a lot of us would get if we did an at home TTT. I would replicate to show you, but I’m at home alone, recovering from a recent concussion, and just not Ina mood to torture myself (although I often am.). You can look up Moxie14082 and see some of my YouTube videos. Especially the one where I kneel and then stand.

I did a full TTT after a friend (now passed) dx me with POTS from 2000 miles away. The heart rate going up is the POTS. What your BP does can be different for lots of folks. I’m the “classic” sense BP would just keep falling. For me, I was dx with neurocardiogenic syncope too so my BP will climb and climb as my heart rate spikes too and they both try to compensate for me being upright. Then, throw in some mast cell degranulation as my body gets stressed, some adrenaline from the hyperadrenic POTS, and after a while I’m light-headed, seeing black spots, sweating, confused, and losing parts of my hearing me cause the whole Jenga stack is about to come tumbling down when the vagus nerve and brain have a key malfunction. At some point the vagus nerve will try to rev the system up again and instead of a response to go higher the heart rate and BP crash and I pass out. Now, I’m the master of ALMOST passing out so this only happened at the TTT that I know of. After being provoked with one grain of nitroglycerin (that they give to heart attack patients) I lasted 4 minutes and fought to stay that long. In an instant my vitals were 150/100somwthing with a heart rate of 134 to BP of 60/40 and heart rate of 50something. I was out for 22 seconds with “seizure like” activity. Scarily, once I came out of it and recovered I felt “normal”. I even recognized the feeling of coming out of the faint on the other side. I researched and apparently it is not impossible to have syncope episodes in your sleep. I suspect that may be an issue for me at times.

Back to you though… POTS is not something every cardiologist gets or sees the big deal. I am fighting with the stress lab to do a simple blood draw for me to confirm my hyperadrenic POTS. It is important because I have EDS, mast cell issues, and POTS. The cardiologists there is telling the nurse who did my test “Big deal. Everyone who has syncope probably has hyperadrenic POTS. So?”. Me thinks I need to find another lab to do my tests and I terpret the results.

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