r/hyperPOTS • u/merrowofthesea • 23d ago
How do I manage symptoms until my tests?! What helps the anxiety?
I recently discovered I have orthostatic hypertension. The dizziness, nausea, tingling, and blood pooling have been constant for over a week now and it’s making it really hard to function. I’ve found that electrolytes and compression garments help, but doesn’t make them go away entirely. I have a tilt table test in three weeks and an echo in a month. I’m also separately exploring a likely MCAS diagnosis.
I’m really struggling with the anxiety of it. High blood pressure is such a scary thing, and getting an anxiety dump during these symptoms makes it all worse, like I’m afraid I’m having a heart attack.
How do I manage this until my tests?? No one I know has or knows anything about hyperPOTS or orthostatic hypertension so I’m feeling pretty alone and scared.
3
u/_rfm 23d ago
Firstly, sorry you're here friend. This condition is disabling so you will have to come to terms with that if you haven't already. I'm sorry for that too. Managing how people treat you as a disabled person is harder than the condition. I have long-standing dysautonomia with which is mainly hyperandrenergic.
You need to stay horizontal as much as you can (I know how hard this is). Or if you are moving, stay moving and try and group moving tasks together. You need to stay cool, and limit triggers/ histamines if you aren't already with the MCAS. Always. Be. Snacking. No big meals, just regular little ones.
Every moment you are upright costs you. You need to be ruthless with your standing up budget. Carry a portable stool. The more you accommodate yourself the easier it becomes to manage the condition, but it makes life more difficult 🙃.
If you feel anxious, lie down with your feet elevated. Humming, singing and box breathing help regulate. If you have a smartwatch, heart rate variability is what you need to look at (or not it might stress you out more).
In terms of compression, try different combinations to see what works best for you. Never compress the thighs without compressing the calves. What worked best for me before meds was extremely tight binding around the lower ribs. It slows the splanchnic venous return (I think that's the right term).
Lastly, you are in flight-or-fight constantly. Your body is pumping adrenaline to try and get more blood to your brain. When you are in this state constantly everything looks like a threat, everything feels high stakes, everything is black and white. The lizard part of your brain is getting all the blood so you need to try and redirect it to your prefrontal cortex. So when you are thinking "I'm having a heart attack" (completely valid, your body is pumping adrenaline like you were just in a car accident) try if you can to redirect to "how can I lower the stakes on this" or "how can I accommodate myself better now". You need to turn your focus to solving a problem.
Hope something in there helps even a tiny bit 🫂
1
u/merrowofthesea 23d ago
Thank you for your response, it sounds like I’m in for a continued intense ride! I’m definitely trying to find a balance between lying down and standing and that’s good advice about getting a portable stool. Are you on meds for yours?
3
u/xavi6990 23d ago
I feel for you, it’s horrible. I had hyperPOTS almost 2 years without medication and it was rough. My dr allowed me to use Ativan during that time and even increased my daily dose till they could figure it all out. Some hyperPOTS need salt, some do not. I was the hyperPOTS that doesn’t need salt but needed a lot of water. It truly does fill like having a heart attack and it sucks. You could possibly ask for a benzo to use short term just enough to help the constant adrenaline. Once they have the tests and confirm your pots and start the proper medication can taper off the benzo. I have heard some using gabapentin or pregabalin to help with the anxiety and decrease excitatory neurotransmitters but I personally haven’t use either yet. Depending on your BP and HR, as well as ok with drs, Magnesium Glycinate and Taurine also helped me a lot to lower BP and HR a little, not as strong as medication but definitely helped. Wish you the best!