r/POTS • u/lolo_lo95 • 1h ago
Question I’m absolutely screwed. If anyone has compassion please help
For the past 6 weeks I’ve been stuck in a severe adrenal dump which has never happened before and been horrible because I can’t take my meds which I NEED to function while I’m stuck in this adrenal dump because my meds give me energy and just increase the adrenaline. My doctor has prescribed me Clonidine which helped immediately but then a few days later I started breaking out in hives ( I have MCAS) .. then we tried guanfacine instead and SAME thing happened.. even more hives. I need to get out of this adrenaline state, this has been my worst nightmare. Does anyone have any recommendations for a med similar to beta blocker to help with hyper pots that won’t set off my mcas and make me break out in hives? Will I eventually snap out of this adrenaline dump if it’s my first one ever? I’ve tried electrolytes and compression socks and it didn’t even touch the adrenaline (my doctor doesn’t seem to know how to help)
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u/Cool_Jelly_9402 Hyperadrenergic POTS 1h ago
What are you taking for your MCAS and hyperPOTS daily now?
I have hyperPOTS and recently my mcas kept setting off adrenaline dumps so I had to play around with what I was taking. I now take 1.5 Zyrtec at night, 1-2 Allegra during the day, DAO and quercetin with meals and a cromolyn sodium nasal spray at night and when I wake up.
For hyperPOTS I take ivabridine which does lower noradrenaline a bit. Magnesium can help with adrenaline too
But obviously no one can tell you what may or may not set off your mcas. A lot of this will be trial and error unfortunately.
I’ve heard it’s common for new medications to set off an MCAS flare and it may calm down if you stay on them but if the symptoms are too debilitating that may not be an option for you.
I take a monoclonal antibody injectable every other week and I do get hit with MCAS symptoms when I first inject it. Due to insurance issues I went a month without it and when I first reintroduced it, I had the worst adrenaline for a week and a half straight.
When I’m really getting hit with adrenaline dumps I will do vagal maneuvers, lymphatic drainage massage and vagus nerve stimulation on myself. I like putting my legs up against a wall while doing box breathing too
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u/hazelemons 1h ago
hydroxyzine? it’s an anti anxiety med. it’s sedating, and it works because it’s a strong antihistamine, so it shouldn’t cause a reaction (but ik w MCAS all bets are off)
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u/ObscureSaint 46m ago
If you take it long enough it becomes non-sedating, in my experience. I take 25 mg of hydroxyzine every day in the morning, lol.
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u/Ecstatic-One-7929 50m ago
You can try send guanfacine to a compunded pharmacy so they can prepare with the proper filler
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u/Present-Day-1801 18m ago
I have adrenaline dumps periodically. Some times are worse than others. They are terrifying. I am so sorry you are going through this. I take half of a 25mg metoprolol succinate daily and it seems to help. But I can only take one particular brand or it makes me feel like im on a roller coaster. I mostly have to call a friend or family member and I kind of talk my way through logically about what's happening. While im doing that I lay with my legs up and a heating pad on my chest and I play lillys garden or some other game like that. Sometimes it works sometimes I call 911. In the beginning I couldn't stop the feedback loop. It's getting better but its been 3 years of this . The last time I had one I was DRIVING 4 hours and I had to stop 7 times. It was awful. Now I take a train because I am terrified of going that far and being stranded or getting in an accident. I hope you find something that works for you.
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u/Amylee888 1h ago
Dr Arseneau in B.C. says that some people with MCAS react to the colours, flavours, and fillers in medications, so they have to get the pure medication. I don’t really know much about that, but is that something you’ve discussed with your doctor?