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Posted

Recently I started having MCAS symptoms and hyperpots episodes, and my doctor is starting me on clonidine. The thing is that I'm not always hyper-- often my blood pressure is actually too low. I suspect getting my MCAS under control will stop a lot of the hyper symptoms.

Would it be appropriate to take the clonidine just when I'm in a hyper crisis? I would take beta blockers instead but I react poorly to them and they make my MCAS worse. Happy for anyone's advice, especially if you also Have MCAS

Posted

I take Clonidine as I had adverse effects to beta blockers. I was told by my physician to never stop taking it abruptly as this can cause rebound hypertension - sometimes at dangerous levels. If your doctor started you on it I would assume he/she wants you to take it as directed on the prescription label. If you find the dose is too strong for you, I’d advise going back and asking to either lower the dose or try something different (perhaps a calcium channel blocker).

Best wishes!!

Posted

I second the advice on rebound hypertension.  It can lead to hypertensive crisis, even in those with low BP normally.  I occasionally take an extra 1/4 tablet if I know I am going to be doing something that raises my BP but don’t stop it entirely.  The rebound can be anywhere from 8-24 hours later so don’t think it isn’t happening a day later.  You have to check.  I am extremely sensitive to it and only take 1/4 tablet three times daily and a half at bedtime (I have supine hypertension).  Methyldopa  is another option which i *think* doesn’t have the extreme rebound effect but is on back order in pharmacies until March in the states.  You should ask your dr or pharmacist about rebound with methyldopa.  

Posted

@lamp_girl - I took clonidine years ago and was told to take 1/2 tab twice daily. I could only tolerate 1 week of it due to it making me so tired. Then I was told to stop the evening dose for a week then the am dose. The first night I stopped the pm dose my BP sky-rocketed and I had a full blown panic attack - I tought I was dying. Be careful with this medication, it is very powerful and nothing to fool around with. Best to check with your doc. 

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