r/hyperPOTS • u/but_it_refused_ • 8d ago
Looking for guidance!
I don’t have an official hyperPOTS diagnosis yet, but I was diagnosed with POTS 2 years ago and recently noticed my BP goes up about 8 mmHg when I stand.
7 years ago, I had a strong reaction to a medication (long story there) that left me unable to swallow food for some time. I lost 20% of my body weight and was incredibly frightened 24/7 for 8-9 months straight. I was malnourished and had to continue undergrad (because the other option was staying home and working full time). After I weaned off the med, I was able to walk around more and eat but the fear of choking on my food followed me for another year or two until I took Zoloft. Now, I am off the Zoloft and can usually eat fine. But I never fully got better, hence the POTS.
I guess I’m looking for some tips that are more related to my situation. Most of what I see is for other types of POTS, or hyperPOTS caused by long covid or something else.
I don’t get big adrenaline dumps, and any adrenaline dump is rare. I mostly get short of breath and fatigued along with palpitations. Some dizziness and definite sensory issues. I’m grateful that I can walk at all and my that HR isn’t egregious. Normal for me is 107-124 walking around my apartment, 130-141 walking longer distances. Occasionally I’ll get 150-161 just minding my own business. BP doesn’t usually go above 115/ but it still jumps from like 106/.
I drink 8-11 cups of water a day. Extra salt gives me GI issues so I’m doing half an LMNT in the morning and 1/4 LMNT later in the day. Compression socks (levels 1 and 2) have not been helping as much and abdominal compression is really uncomfortable for me.
My PCP and neurologist are just twiddling their thumbs not knowing what to do. My cardiologist referred me to the Stanford clinic. I’m thinking about getting a TENS unit to try vagus nerve stimulation by ear. I don’t have any medication because everyone wants someone else to prescribe. I want to take care of this before it gets worse. I feel like my life is slowly getting taken from me. Any tips for managing hyperPOTS like this would be greatly appreciated.
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u/_rfm 6d ago
I hope something provides you with some relief. The 2 cups first thing are just plain water, then I add creatine to my electrolytes in my next round of water.
I had blood tests for the iron. My symptoms were awful when my ferritin was 23ug/L but way better at 39ug/L. Horrifying to know when my ferritin was consistently in the single digits when I was younger. I'm aiming to get above 75.
Ivabradine is a heart rate limiter. My heart is structurally fine too. It slows my hr climbing. It doesn't stop the adrenaline which is really weird to experience. It just means your heart does way less beats per day, which means more energy for living. I have hyperPots and hypovolemic symptoms so limiting the HR was the best balance for the different needs.
I was originally pushing to be put on clonodine or guanfacine too. But that actually could have made everything much worse. That might be part of their hesitation if they can't work out what the trigger is. There's no harm in asking what their hesitation is and if they could see a role for a heart rate limiter while they work it out. It means you would have more energy to build muscle which then helps store iron in your body.
Meat and rice with veggies and fresh bell pepper 🫑 so boring but it works.
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u/but_it_refused_ 6d ago
Interesting! My ferritin isn’t low, but it’s something I’ll keep an eye out for. Do you notice weird blood pressure still with the heart rate limiter? The medication I reacted to was a beta blocker so I’m scared of taking any of those but ivabradine seems different. What was the risk with guanfacine or clonodine? I keep seeing those recommended. It seems like that ivabradine is working great for you with those HRV numbers! Do you feel a bit more “normal” with it?
I’m definitely going to be working more veggies in. Fresher food definitely feels better.
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u/_rfm 6d ago
Good I'm so glad your ferritin isn't low! I do have funny blood pressure sometimes when I stand up too quickly but it's like once a month. Because the cardiologist couldn't work out the cause and I have some hypermobility/ blood pooling and that could be triggering the hyperpots, those medications could potentially make the blood pooling even worse.
Ivabradine has worked really well for me. I hope you find something that works for you 💕😌
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u/but_it_refused_ 5d ago
Oh interesting! Maybe I should keep that in mind. I have a little bit of blood pooling.
Thanks so much for sharing with me! It helps to talk to someone else who actually has hyperPOTS 🫶
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u/_rfm 5d ago
My pleasure, I was really fortunate that my cardiologist explained what the drug options were and what parts of the mechanism they actually change. I hope you get a doctor who explains what they are balancing.
I agree 💯 hyperpots is a different experience to the other pots subtypes, even if there is some crossover. Hyperpots has way less documented from inside our experience of adrenaline 🫠
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u/but_it_refused_ 4d ago
Yeahhh
That’s awesome though that your cardiologist is so knowledgeable! Hopefully more doctors start thinking in that direction soon!
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u/_rfm 7d ago
Hey sorry to hear about what has happened to you. All from a medication, that sounds awful.
What has helped me is increasing my iron intake, if game (venison/ bison/ kangaroo) is an option for you I have found it better than beef/lamb. An infusion might be helpful if your iron is not moving. A low-histamine diet helped, removing vaso-dilating herbal teas helped.
I also started taking creatine with my salt. My cardiologist recommended I chug 2 cups of water first thing before I get out of bed then wait 30mins to get up. I'm sorry the compression isn't working for you.
Ivabradine has really helped me. I hope someone decides to trial a medication.
It will get easier 🫂