CJ65 Posted July 27, 2021 Report Share Posted July 27, 2021 Hello Im enrolled in a POTS exercise study and had to be off meds (Guanfacine and Propranolol) for the assessment. It has been a while since I’ve done that and I felt so sick. My BP was up to 220/126 and HR in 150s, couldn’t sleep, the “buzzing” and pain were rough. How do you all get through situations like that? Ill have to repeat it again and would love some tips. Thank you Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 27, 2021 Report Share Posted July 27, 2021 Hi @CJ65 - that is a tough one. Guanfacine and Propranolol both should not be stopped abruptly or you can get those extremely high BP's. I was on guanfacine for years and luckily my BP improved so I could go off it but I had to do this EXTREMELY slow. I would never do this suddenly! Once I had to stop my beta blocker for 3 days before a TTT and I was sooo sick! Personally I would not be able to partake in a study that requires me to stop my meds, but I applaud you for doing it! Quote Link to comment Share on other sites More sharing options...
CJ65 Posted July 28, 2021 Author Report Share Posted July 28, 2021 Thanks @Pistol. Yes not ideal, I did wean a bit. Interestingly this is the 3rd major POTS center that had me hold meds for testing. Now I need to know your secret to getting off Guanfacine! Quote Link to comment Share on other sites More sharing options...
Chiara Posted July 28, 2021 Report Share Posted July 28, 2021 Be careful with reducing Guanfacin. I take only 1mg in the morning and tried to reduce it two times and every time I've gotten very serious BP-crisis with cerebral symptoms (non-stop vomiting, heavy headache, tremors and intestinal cramps,...) So in my case I can only stop Guanfacin for 24h. Now I will try to change extended release to regular and reduce it weekly very moderate. The regular form apparently works for 4 hours (3x1mg), so maybe it's a chance to change Guanfacin some weeks before you will have this examinations? Please be careful and let your doctors know the danger of cerebral BP-Crisis!!! Quote Link to comment Share on other sites More sharing options...
CJ65 Posted July 29, 2021 Author Report Share Posted July 29, 2021 Thank you @Chiara. Yes I’m aware of the dangers and I won’t do that again 😬 Quote Link to comment Share on other sites More sharing options...
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