February 7, 2012 at 1:45 pm #105sarahdionnaParticipant
During this past summer, I started fainting a lot more so my PCP referred me to a new cardiologist. He had me wear a 72 hour holter monitor. I fainted 3 times while wearing it. He said that the first time, I had tachycardia but the other 2 times I had a normal resting heart rate. I actually got the 3rd faint on video and gave him the YouTube link to it. I was doing pull ups and then fainted after the 5th rep. I only got off the bar because I was feeling really POTSy, weak and lightheaded. I actually felt like my heart was racing but he said that it wasn’t in the results. He told me that he didn’t think I had POTS but would continue to work with me to find out what was wrong. He said that he would order a TTT for me but I still have not heard back from him since then. Last night, I decided to do a poor man’s tilt table test using my wrist blood pressure cuff that also tells the heart rate. I got the low heart rate as well. Which is odd to me.
Method: Take a reading and then immediately take another reading as quickly as possible.
10:31pm 115/76 63
10:32pm 108/77 81
10:32pm 111/77 82
10:33pm 107/78 85
10:34pm 103/75 85
10:34pm 105/79 93 within 3 minutes standing an increase of 30 bpm
10:35pm 108/78 96
10:36pm 107/80 97
10:36pm 98/71 109 within 5 minutes of standing
10:37pm 108/82 98
10:37pm 104/78 100
10:38pm 110/81 57 within 7 minutes of standing *irregular heart beat detected*
Then I sat down because I felt faint. My legs and feet were purple, cold, fatigued, and sore. When I realized that I should have taken my BP and HR again after sitting down…
10:41pm 131/83 59
10:47pm 130/81 64
Usually my BP while sitting is about the same as the BP readings during the poor man’s tilt table test. It is really unusual for me to have it above 120/80. My resting heart rate is also usually 90 bpm (although when I started the sitting part of the poor man’s tilt, it was 63).
At about 11pm after laying down to go to sleep, I started have tightness in my throat. My lips, tongue, jaws, ear area, and throat started swelling, tingling, and having pain. I started having cold sweats, a bad headache, and abdominal pain. Here and there it was hard to swallow and my mouth would randomly fill with a lot of saliva. I was also nauseous at different points but not necessarily when my mouth filled with saliva. One of my doctors told me that nausea can cause the excessive saliva production. I was debating using my epipen but ended up just taking one benadryl instead. I fell asleep at about 2:30am and woke up at about noon. My lips were still swollen but have gone down some in the past 2 hours. My jaws still feel tight, though.
The tightness and swelling experience is starting to become a common thing at least once or twice a week. I have no idea what is causing it or how to stop it. During the experience, my BP was alternating between high and low, as well as my heart rate while sitting. I fainted once when going from the bathroom to the couch in my living room. I really don’t know what to do and it scares me.February 8, 2012 at 11:42 am #1730PalominoMorganParticipant
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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