TXPOTS Posted May 25, 2010 Report Share Posted May 25, 2010 For those on clonidine, how long did it take before you saw an improvement in POTS symptoms?I have noticed my adrenaline surges are gone, and my blood pressure, which was running high when upright, is back to normal, along with my heart rate. Unfortunately, I have not seen an improvement in my main orthostatic symptoms (coat hanger pain, headaches, dizziness, and fatigue). As a blood pressure medication, clonidine works within 30 minutes, but I realize there may be a different timeline for POTS. Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted May 25, 2010 Report Share Posted May 25, 2010 I had benefit within a couple of days, I believe three days. The one thing you have to watch out for is hypnogogic hallucinations. When I went on it, it was very distressing. I posted the topic and found that some of us replied that they would see very disturbing images that were severe enough to warrant ending the medication. I am at peace now with the hallucinations- some are pretty funny (South Park Kids, LOL!) The best was a Coral color biblical type angel. You have to pay attention to what you think about or watch on TV right before you fall asleep. Another common symptom is to semi wake up and feel like your entire body is vibrating, there is a taste and smell associated with this. Another symptom is to actually see the hallucination and then feel it as well. I caution you because I think this might not only be distressing, but potentially dangerous as well. I can see someone bolt out of bed and smack their head with the fast orthostatic change. That said, the drug has worked a miracle for me. It has cut my nausea in half. Although it is supposed to lower BP for many POTS patients, it does not touch the BP because of the dysfunction that we have. It is one that you have to taper. You cannot end it suddenly. There are some very bold warnings online about this. This is probably more than you wanted to know, but I hope it helps, Kits Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 25, 2010 Report Share Posted May 25, 2010 Id love to give it a try - if the aus docs would let me - but i wouldnt be surprised if it made the dizziness worse (as beta blockers did this for me despite my hyper presentation). Quote Link to comment Share on other sites More sharing options...
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