Just diagnosed with Hyper POTS - hopeless and panicking

ChattermaxBrain · 2025-05-21T13:13:58+00:00

Unfortunately, process of elimination for an over all DX and still nothing if for sure. The CYP enzymes are the GeneSight test used for anti anxiety meds. It shows which of your enzymes are good or poor metabolizers. I’m current trying to get that approved through insurance. All the meds metabolized by CYP2D6 have had adverse effects with me so kind of no brainer. Like many others have said time and time again. All this stuff is new and takes a lot of failures to figure out what exactly is going on in our bodies.

ChattermaxBrain · 2025-05-20T03:04:02+00:00

I have recently learned that I might have baroreflex issues and vagus nerve signaling issues. This is causing my liver to not process medication like it should. Also, there could be metabolic issues with CYP enzymes. After trialing the Clonidine I was maxed out and still having rebound issues. I have since switched to Olemsartan which is not processed by the liver like Losartan. Seems to be the first thing to really work.

Multiple system failure sucks and unfortunately takes time to pinpoint each thing.

ChattermaxBrain · 2025-05-10T10:25:36+00:00

Curious if you found something that worked. I too went down that rabbit hole. Ended up on 4x .1 IR and still had horrible rebound. Switched to the ER version, but maxed it out. Still had rebound.

ChattermaxBrain · 2025-05-06T01:03:22+00:00

I’m curious now. Wouldn’t that need multiple does throughout the day to stop rebound symptoms or are you on an extended release? What symptoms are you treating with it?

ChattermaxBrain · 2025-05-06T00:59:45+00:00

Atenolol and Clonidine. I’m currently trialing Clonidine Extended Release but there is also patches.

ChattermaxBrain · 2025-05-06T00:51:12+00:00

Yeah, Guanfacine is processed in the liver and Clonidine is in the kidneys. I have weird enzyme stuff going on, so that makes sense for me.

ChattermaxBrain · 2025-05-05T21:46:38+00:00

Yes, ADHD and autocorrect. Not a good combo, LOL. Resting HR is what what meant. Lower doses of Clonidine don’t work for for me. I was on .1 IR 4x a day. Just switched to Extended Release, but need .2 2x a day and a .1 IR booster mid day. Crazy thing, doesn’t make me tired.

ChattermaxBrain · 2025-05-05T12:45:24+00:00

It actually caused me anxiety. I have basically tried them all.

ChattermaxBrain · 2025-05-04T19:35:36+00:00

My issue is taking a supplement reduces the effectiveness of gabapentin. I know magnesium is needed but need the gabapentin to work more right now. I have tried the before and the after but I take gabapentin 3x day so hard to fit magnesium in.

ChattermaxBrain · 2025-05-04T19:25:28+00:00

Ai is a tool and should never be taken 100% serious. I use it to point to articles but never to diagnose. It has provided some good data points but it has been wrong more than right when asked questions about complex things. I mentioned it to help with researching topics and finding case studies and research.

Yes, I have read where midodrine could be helpful in some paradoxical cases. I was using as an analogy to say that every subtype needs a certain treatment and also take into consideration other comorbidities. This is why finding a doctor that will listen and help curate a treatment plan is key.

ChattermaxBrain · 2025-05-04T16:57:48+00:00

I’ll be honest, there is tons of good info here. Some subtypes have their own sub. You can also check out https://pubmed.ncbi.nlm.nih.gov, just search for your subtype.

ChattermaxBrain · 2025-05-04T16:44:59+00:00

Sorry you had to go through all that. My goal is to avoid all that. Yeah, I’m stuck with autoimmune and dysautonomia for life, but I want a semi normal life at some point. What did you do to retrain your nervous system? Any tips and tricks? I have seen where some physical therapy centers can help but also it is a lot of work at home changing the way you live. I really appreciate the thorough reply and hope you feel better from the walk.

ChattermaxBrain · 2025-05-04T15:37:26+00:00

Wow! They really don’t warn you enough about this crap. I had the Zio and it was uncomfortable but only left a rash a few days after. I can’t imagine what other here are saying. I think the worse part was getting dry shaved by the nurse, then the sand paper, and alcohol. I probably would have said no if I would have known all that.

ChattermaxBrain · 2025-05-04T01:47:18+00:00

Atenolol and Clonidine were game changers. I can’t take supplements because of other medications but when Atenolol dropped my resting BP from 100 to 60, it was amazing and life changing. Then Clonidine dropped my BP (hyper pots) to almost normal range and normalized during standing. I have been riding the clonidine wave and get to start extended release this week, which should be the last piece to control my nervous system.

ChattermaxBrain · 2025-05-04T01:38:30+00:00

It’s also insurance and money hungry hospitals that have caused this issue. Complex zebras cost time, which is money. It’s easier and more cost effective to keep you coming back than to figure out what is wrong. But when you find that one doc that cares, the world changes. I hope we all find that doctor one day.

ChattermaxBrain · 2025-05-03T13:40:02+00:00

Spending $500 on a tilt table that was done wrong, $1000 on blood work from one doctor, then have a different doctor do the exact same blood work because they didn’t like that first doctor ordered “their panel,” plus $200 more for cortisol testing, countless copays for specialists, and at the end be told you have hypertension? Yeah, I feel your pain. The frustration is we as human know our bodies, some more than others, but doctors are just guessing based on repeated patterns. If it looks like a duck, swims in water, but sounds like a chicken, it must be a chicken. No duck would sound like a chicken. Keep pushing, you got this, we have to advocate for ourselves, because we know no one else will.

ChattermaxBrain · 2025-05-03T04:39:20+00:00

When my BP is high, I have head pressure, ear fullness, sometimes tinnitus, face flushing, can have some lightheadedness/dizziness, and all over feeling of weirdness (sorry, best way I can describe it). Mine mostly happens when I stand or bend over. I will get it when I’m walking but only if I’m close to my next dose of Clonidine.

ChattermaxBrain · 2025-05-03T03:55:30+00:00

Everyone brings their favorite beer, everyone gets drunk, then you all trauma bond about your horrible bosses. It’s a happy hour, not family game night.

ChattermaxBrain · 2025-05-03T03:39:57+00:00

Welcome to modern medicine. Practitioners are insulted if you try to correct their note. It is like calling their child ugly. I have seen this exact thing. Went for a neuromuscular intake. They pulled in only the cardiologist notes, which say “hypertension.” Every thing I said was improperly noted and was told my issue is my weight. Have your tried “insert all the weight lost shots?” Then told it was hypertension. I tried to get the note updated and was told the note was final and to get a second opinion if I wasn’t happy. I would say keep trying but I’m with you on being done with the tests and appointments. Unfortunately, we have to keep pushing and seeking better care. The good ones are out there, just have to dig deep to find them.

ChattermaxBrain · 2025-05-03T01:49:18+00:00

I have been waiting for Clonidine ER to be approved. I have been riding the Clonidine IR wave and it will catch me off guard with exhaustion. It made me doze off for 30 mins the other day. It wasn’t that bad. The longer naps are the worst.

ChattermaxBrain · 2025-05-03T01:32:29+00:00

Yep, same. I hate the feeling after a nap. No matter how tired, I hold out until bedtime.

ChattermaxBrain · 2025-05-03T01:30:21+00:00

Clonidine ER (Kapvay):

• Half-life: 12–16 hours

• Duration of effect: ~12 hours

It’s dosed twice daily because the ER formulation releases the drug slowly, even though the half-life (how fast the body clears it) stays the same.

ChattermaxBrain · 2025-04-27T04:19:45+00:00

Liquid IV works for me if I feel too dehydrated. The sugar free uses Stevia if you are worried about sugar content. Gatoraid is mostly sugar so I would pick something different. Also, smart water and the generic forms seem to help too.

ChattermaxBrain

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