diamondcut Posted June 4, 2012 Report Share Posted June 4, 2012 I have a new concern I would like to ask if anyone on here has had trouble with or success.I have been advised to try calcium channel blockers to slow my HR and help my Migraines. I have PD form of pots i believe which is related to my EDS. I do also have a lot of traites of H type Pots.I reacted extremely badly to Beta Blockers (worst stabbing chest pain and collapsing after i had a knife like pain through my heart) and Ivabradine also gave me an allergic reaction by itching and a rash on my legs.I wonder if people could let me know how they got on with Calcium blokers, i am very sensitive to small amounts of any drugs, and because these drugs have a direct effect on your heart i am very worried. My instinct tells me they could be very simialar in effect to mess my system.I seem to be fine on Midodrine and i am on a Tricyclic drug. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 4, 2012 Report Share Posted June 4, 2012 My daughter is unable to tolerate many meds also. She cannot tolerate beta blockers. The doctor then prescribed a calcium channel blocker which she also was unable to tolerate.Hopefully, you will be able to find something that works for you! Quote Link to comment Share on other sites More sharing options...
issie Posted June 4, 2012 Report Share Posted June 4, 2012 Diamond,I thought you had high NE (noriepi) levels. That would suggest a trial of clonidine. But, didn't you already try this?Issie Quote Link to comment Share on other sites More sharing options...
E246 Posted June 4, 2012 Report Share Posted June 4, 2012 I tried calcium Channel blockers - wasn't sure if they did much and then had a few uncomfortable short surges within 1/2 hour of taking a tablet. I dropped down the dose to 90mg daily. Finally stopped.Ivabradine gave me even worse chest pain.CCB might work for you - they are easier to stop than say bb or florineff. So could be worth a try. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 4, 2012 Report Share Posted June 4, 2012 When all my issues started almost 5 yrs ago, a neuro put me on a calcium channel blocker, Verapimil, and it helped my migraines a great deal. This was prior to knowing about POTS. My Lyme doc tried getting me off of as many meds as possible when I was feeling better and that's when I stopped the CCB. Now that I am dx'ed *** POTS (even though I am sure I had it back then too) the docs won't put me back on Verapimil because it can cause your HR to increase. I have to say, I had no ill effects from it and it is a much safer drug than Depakote, so I would try it again in a minute if they would let me. You should titrate up from a low dose just to make sure you don't have ill effects with your BP or HR. BUt, when I stopped, they stopped me cold turkey and I was fine. Quote Link to comment Share on other sites More sharing options...
diamondcut Posted June 5, 2012 Author Report Share Posted June 5, 2012 Diamond,I thought you had high NE (noriepi) levels. That would suggest a trial of clonidine. But, didn't you already try this?IssieHi IssieMy NE results came back as normal, but when they did the two blood tests they laid me down for 5 minutes and then stood me up and re took the second blood vial after one minute. Im not confident the results were correct.I have these adrenalin surges as many describe and my hands shake. My resting heart rate never drops below 100bpm either. I feel like i have to much adrenalin, but at the same time i wonder if thats what gets me through the day!! I did indeed go on Clonidine. I didnt have a bad reaction to it like a lot of drugs but it did bring my BP down and it made me feel generally weaker. But was this weak feeling becuase it did cut down the adrenalin.I think it is the same story with the CCB, suck it and see!! Quote Link to comment Share on other sites More sharing options...
issie Posted June 5, 2012 Report Share Posted June 5, 2012 Sounds like a Hyper response to me too. One thing to be aware of - CCB's vasodilate. I know you said you thought midodrine was good for you and it vasoconstricts. So, one thing to keep in mind. Interesting that Rama is now saying he thinks midodrine in time, will lower volume. I haven't seen any studies supporting this. But, an interesting idea. Something to think about. Clonidine lowers the response of the sympathetic system and it will make you feel more tired - as will beta blockers. I was told that with time that feeling of tiredness will get better and I'm hoping they are right about that. Cause, I'm more tired and more dizzy on it. But, it really helps those surge feelings. I have tremors too. Some meds made mine worse. Since I needed for my bp to lower, clonidine has done that. It has leveled out the extreme swings with my bp from high to low and my surges are better. Not completely gone, but much better.Hoping the CCB will help you. That's what we have to do - all these experiements - cause we just don't know how our body will respond without giving it a go. Keep us posted.Issie Quote Link to comment Share on other sites More sharing options...
peregrine Posted June 5, 2012 Report Share Posted June 5, 2012 I was on a calcium channel blocker for a few months - they prescribed it because they were nervous about the effect of beta blockers on mood in my case. Long and short - it lowered my heart rate but didn't do anything else (in contrast to later beta blockers, which increased my standing time and general ability to do things). I finally got off of it two months later after pointing out that it was making things slightly worse (which the cardiology folks didn't seem to care about much) and was causing edema (which they cared about a lot). No major side effects other than slightly worsening things, though. Quote Link to comment Share on other sites More sharing options...
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