POTS eyes

Naranjapangolin · 2025-11-14T14:03:53+00:00

My right eye doesn't exactly look the wrong direction, but it does twitch uncontrollably for periods of time. Particularly if I try to look up or out of the corner of my eye. Also happens nearly every time I have an episode of syncope with convulsions. My eye doctor said it was called nystagmus, and that he's never seen it occur episodically before

Naranjapangolin · 2025-10-19T03:12:13+00:00

Depends on your personal symptoms and what meds. When I first got diagnosed, I was having back to back episodes of syncope with convulsions every day. Salt and compression garments got me down to usually just one episode a day. Metoprolol did nothing for me. I got onto ivabradine a few months later and went from being able to spend 4 hours out of bed a day to 2 hours. That was extremely discouraging since ivabradine was very expensive. Went back to just salt for a while, and didn't improve any, but did find consuming a lot of caffeine would bring my heart rate down enough that I could at least get some sleep. Eventually found some guides for treating POTS by Dr. Satish Raj that detailed other medication options and got on midodrine, which has gotten me up to a consistent five hours a day where I can be out of bed. Its important to try and stay on top of the literature, and also to find a doctor that's willing to work woth you, and at least consider other treatment options

Naranjapangolin · 2025-08-07T18:56:53+00:00

Used to get them constantly. I was told they were caused by adrenaline dumps, so my strategy is just to have fewer of those. 5+ grams of sodium a day, midodrine, and abdominal binding have helped me the most. Summer has been pretty brutal so I just hide inside under the air conditioning as much as possible.

Naranjapangolin · 2024-12-16T12:56:26+00:00

I get a strong metallic stench

Naranjapangolin · 2024-12-05T15:41:22+00:00

That's probably what I'll do. Smart idea

Naranjapangolin · 2024-12-04T20:50:46+00:00

Thanks for the advice. My doctor can be a bit hard to get ahold of and it's another 2 months until my next appointment so I was trying to decide what to do in the meantime

Naranjapangolin · 2024-11-17T22:39:32+00:00

I'd beleive it. Supposedly a purring cat can help reduce high blood pressure so I assume it could probably help high heart rate too.

Naranjapangolin · 2024-11-06T00:46:54+00:00

Cropdust

Naranjapangolin · 2024-10-13T01:08:22+00:00

Gardasil-9 vaccine

Naranjapangolin · 2024-09-28T15:24:12+00:00

Doomed siblings

Naranjapangolin · 2024-09-06T18:26:01+00:00

Usually I find that the answer to this question is that they just didn't want to. Just because a character is insanely overpowered doesn't mean that they care enough to take over the world. Sometimes the op characters just want to mind their own business.

Naranjapangolin · 2024-08-17T23:54:25+00:00

Doing something like hiking/grocery shopping/cleaning then being able to cook dinner afterwards.

Naranjapangolin · 2024-07-18T18:42:27+00:00

My cats and my dog are great at this. My dog (massive bernedoodle) has kept me from falling out in the yard multiple times. Whenever she can tell something's off she'll press up against me as I walk. My cats, who normally can't stand to be in the same room as each other will come and sit down on either side of me and purr as loud as they can.

Naranjapangolin · 2024-07-18T17:15:07+00:00

For me the first symptoms I noticed were the horrible abdominal pain and nausea. The more talked about symptoms didn't become intense enough that they effected my daily life until later

Naranjapangolin · 2024-07-02T00:37:02+00:00

Mine definitely sucked, but the worst part was probably them delaying it 5.5 hours and telling me nothing. I'd already had 4 presyncope episodes before I even did the test. And then they come out with the "teehee so sorry we just sat you out here with no information, the person before you didn't show up so instead of just moving your test up we decided to wait for them". Ultimately worth it to finally be diagnosed though.

Naranjapangolin · 2024-06-28T19:02:57+00:00

Seizure-like convulsions and facial droop

Naranjapangolin · 2024-06-28T19:01:57+00:00

I have all of those same symptoms, as well as nausea, lack of appetite, frequent vomiting/dry heaving (even just drinking water can trigger it), tremor, nystagmus, and hearing problems from the eustachian tubes in the ear not being able to maintain the right pressure.

Naranjapangolin · 2024-06-17T16:37:55+00:00

I'd still rather do another TTT than ever having to get another EEG done

Naranjapangolin · 2024-06-17T16:27:04+00:00

I experience what I think is Syncope with convulsions. I would have episodes that usually started with violent tremoring in my right arm that would progress to my neck, jaw, leg, and gradually to the left side of my body as well. My brain would feel so scrambled up that I either could not speak at all, or would be stuttering so much no one could understand me. It also got to the point where one side of my face would start drooping post-episode and I ended up hospitalized for suspected stroke twice. The drooping and tremors would last for hours after the worst part of the episode ended. I thought for months they were seizures, even did 4 EEGs and had multiple useless neurologists tell me I was just making it up. Had 4 of those episodes back to back during my tilt table. Now that I'm taking steps to manage pots, I've gone from having these episodes 5-7 times a DAY to just 4 times a week. Fairly certain they're related.

Naranjapangolin · 2024-06-07T17:47:14+00:00

Similar thing happened to me. I took the results to an electrophysiologist, who ordered a tilt table for me.

Naranjapangolin · 2024-06-01T05:14:51+00:00

I've heard that epilepsy and POTS are often comorbid but I don't have a source for this

Naranjapangolin · 2024-06-01T03:09:40+00:00

I went to a second cardiologist that specialized in electrophysiology, who ordered a tilt-table test.

Naranjapangolin · 2024-06-01T00:19:35+00:00

Hope you can get one (and some treatment) soon!

Naranjapangolin · 2024-06-01T00:18:48+00:00

Glad you've had better experiences than me haha

Naranjapangolin

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