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lauralulu

I'm Scared To Take The Calcium Channel Blocker...

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Well, I guess SCARED isn't the right word. More like reluctant. For these reasons:

Don't like the idea of something working directly on my heart. Worried about the long term effects of changing what my heart is doing 'naturally' to compensate for whatever is wrong in my body due to dysautonomia. Feel uneasy about the fact that so little is known about long term prognosis for POTS and these drugs to treat the symptoms, worried that taking them when it's not strictly necessary (since I can and have done for many years, manage without) could end up worsening my symptoms somehow (e.g. masking them when they aren't that bad, then if they got worse, I'd need more drugs to have the same effect and would just end up worse off).

I suppose I feel like as I don't strictly NEED them to go about my daily life, maybe I should just keep going as I am and 'save' them in case I do end up NEEDING them...

Though I suppose equal to those concerns could be that it might help improve my quality of life and the long term effects be good because it's giving my heart a break from working so hard and decreasing the hearts oxygen consumption.

Really can't decide.

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I'm afraid to take everything so I can relate.

Even that last dose of claritin and I only took 1/2 of a tab hit me like a ton of bricks as it got into my system I felt it right away and I had a mini episode.

I can't really offer any advice but just know that I understand how scary drugs can be.

None of my sensations feel right any more-everything is off.

I just want to put of a life preserver and hang onto something for dear life.

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Thanks for adding in a positive, that could sway the decision for me as I'm wanting to get back into studying soon so can be doing without brain fog!

Thanks Lieze for showing understanding, I'm sorry you feel as thought everything is off, it makes the adding in drugs even more scary when you are worried your body will react badly. xx

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I can understand your concerns. I have never been very willing to take medication. I am one of those people who just refuses the thought of medications being pumped into my system. I have been on Effexor xr for 10 years on and off. I was experiencing such bad dizzy spells that totally ruined my life and had me in the ER all the time. Before I figured out what was really going on... my doctor prescribed me Effexor and tossed it up as anxiety. I didn't want to take it though but I just couldn't live like that so I guess I had no choice either deal with the dreadful symptoms or take the medication. Lucky for me the Effexor did control the dizziness and I was able to live a half way normal life again. So I guess what I am trying to say is if the medication is going to help and your symptoms are very disturbing that it's preventing you from functioning you should at least give it a try and see if it helps. Ultimately though it's your health and know one knows your body like you do. But I understand your fear I hate medications and I am really stubborn when it comes to taking them because I don't know what these drugs are doing to my body long term that's my greatest fear anyway. But sometimes with a life altering illness we are left with no choice. I hope you are able to make the right choice for you! Sometimes it can be hard to decide.

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I have been taking a small dosis calcium channel blocker (2mg of a combination of Candesartan und Hydrochlorothiazid) for over 6 years now. I wasnt diagnosed back in 2004 when i first got them prescriped. Back then i was in hospital because of a major POTS flare up but all they could meassure was my high BP. In order to lower my BP they made me take a small dosis of BB plus a calcium channel blocker. After i got diagnosed with POTS in 2007 i noticed that everything that dilates Bloodvessels (like carbohydrates, garlic, diuretics and so on) makes me feel very sick. Then i recently found out that my calcium channel blocker also dilates blood vessels. Iam planning to ask my doctor if i can try to get off them to see if it makes me feel better overall. My BP is still on the high side and my BB on its own might not lower it enough.

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Carinara- that's why I am extra worried. My BP is low so I worry it'll just make me feel worse, plus most people with POTS need vasoconstrictors, not dilators...

:angry:

HopefulLady, I too fear the long term effects. I manage okay without medication which is why I get more reluctant to take them- if I was really struggling or my quality of life was severely impaired like many people's is with POTS then I wouldn't hesitate.

I'm booked in at the doctors in just over half an hour to get this script and I still don't really know if I want it! :unsure:

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Carinara- that's why I am extra worried. My BP is low so I worry it'll just make me feel worse, plus most people with POTS need vasoconstrictors, not dilators...

:angry:

HopefulLady, I too fear the long term effects. I manage okay without medication which is why I get more reluctant to take them- if I was really struggling or my quality of life was severely impaired like many people's is with POTS then I wouldn't hesitate.

I'm booked in at the doctors in just over half an hour to get this script and I still don't really know if I want it! :unsure:

If your doing well without the meds than IMO I don't feel you should take it. The only thing is if your heart is over working itself overtime that in itself can cause problems from what my cardio told me. You don't want to walk around with elevated heart rates all the time either. So I guess it really depends on how hard your heart is working all day long. I hope your able to make the best choice for you. Good luck :)

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i would agree that living with a high heart rate isnt good. can you take midodrine to up your blood pressure if your worried it will dip to low?

its worked for me and im a little balanced with my bp now, although by no way perfect!

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That's good to know Emma!

Yeah, my hr can be high a lot of the time as I also have inappropriate sinus tachycardia. I am currently taking liquorice root in the hopes of boosting my bp and so far it seems to be working reasonably well and I've only been taking it two days. It's meant to work in the same sort of way as florinef. I got my diltiazem from the Dr but haven't taken one yet, but I've got them ready so I can start taking them if I feel my hr is staying problematic, although there have been times since taking the liquorice that it's gone normal, which I'm amazed at. (Like 60 resting and 80 standing!!!! I could have fainted from the shock at that, LOL!).

It would be nice if I didn't end up needing it, but it is there if I do. :-)

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I was on Cardizem for a couple days and it made my POTS much worse. HR in the 180's, dizziness and nausea. My doctor said that calcium channel blockers can make POTS worse.

I do okay on Toprol XL which is a beta blocker. So I guess we are all different. Good luck with what you decide to do.

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I certainly understand your hesitancy...I hate taking new drugs. But, I have been on a calcium channel blocker for over two years now and it's been the one drug that has helped me the most. The beta blockers put me in a perpetual brain fog and lowered my bp way too much as well as my heart rate (even at the tiny doses). The anti-arrythmics (I have afib and svt as well as POTS) started causing neuro issues. So, we resorted to a CCB and it's been fine. It doesn't completely control my symptoms, especially the afib stuff, but it does make the heartrate issues manageable. My bp can run low or high but on the low days it hasn't made it too low. I do, of course, still have days where nothing seems to help but overall I am happy with the CCB. Didn't cause any side effects for me......good luck!

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I take 2 of them a day and if I don't I'm freezing cold. I can't take BB's and I also have raynauds and that is the drug that they use for that.The doc said it may cause my HR to go up a little but I do need it for circulation reasons. I tried to go to one a day recently and it didn't work out. I have been so tired, but they found out my ferritin levels are low again, and are continuing to drop since last month.

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I took Verapamil to try and treat my migraines (still unresolved) and I didn't have any adverse side effects aside from annoying constipation. It seemed to reduce my POTS symptoms significantly, though I tend to have high resting heart rate. When going OFF the Verapamil I have experienced a dramatic increase in POTS symptoms, back to where I was before taking the drug; this is sort of counter intuitive and one of the known side effects of calcium channel blockers is orthostatic hypotension lol... but for some reason it seemed to help me!

It has been my experience that being afraid to take new medicines does nothing but make things worse! You have to keep your head up and remember that if it doesn't work, or if you have some side effects, you can STOP TAKING IT! If a drug doesn't agree with you, stop it; some of the best doctors I've had over the years have repeated to me not to worry about stopping a drug and trying something else.

That's my $.02 at least :D - Good luck!!!

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Benny is right, there is nothing to fear, but fear it's self.

We need to learn to live in no fear... fear and worry makes our condition worse.

I hope you can let go and just give it a try, best of luck.

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I have been on CCB for some years now, I was put on them due to massive BP highs, I tried most BB but they made my BP low's way too low and I would also get a lot of bradycardia. So I was put on CCB they have oddly helped reduce my angina type spells, (so it seems my angina type attacks were probably a rare form of angina!!!! ) I find if I do not take the CCB I get my Migraines with avengance, I realise why now, the cerebral spasms makes! so much sence! Infact it is leading me to think that many of my symptoms are due to spasams here there and every where.

Laura you know your body best and we all react difrantly to meds, I can say for me CCB's seem to be helping, I do have CEDS so I think my blood vesscels are affected, I guess that is why the CCB's might help me. I do not think CCB's have the same rebound thing as BB's so you can stop taking them any time, also CCB's do not react with so many other meds.

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Yes, I forgot to mention how much the esophageal spasms have been controlled on the ccb along with body temperature.

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Thanks for the positive input from those of you who've found taking CCB a help. I've decided to try it after the bank holiday weekend, as I'm not working much so if I have any 'bad' effects, it won't matter so much or 'spoil' anything.

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I have been on CCB for some years now, I was put on them due to massive BP highs, I tried most BB but they made my BP low's way too low and I would also get a lot of bradycardia. So I was put on CCB they have oddly helped reduce my angina type spells, (so it seems my angina type attacks were probably a rare form of angina!!!! ) I find if I do not take the CCB I get my Migraines with avengance, I realise why now, the cerebral spasms makes! so much sence! Infact it is leading me to think that many of my symptoms are due to spasams here there and every where.

Laura you know your body best and we all react difrantly to meds, I can say for me CCB's seem to be helping, I do have CEDS so I think my blood vesscels are affected, I guess that is why the CCB's might help me. I do not think CCB's have the same rebound thing as BB's so you can stop taking them any time, also CCB's do not react with so many other meds.

Hi Anna,

I read your post and wanted to know which CCB you are on. I also have super high b/p readings and possible variant angina. (Prinzmetal's). I've tried both the Norvasc and Cardizem CD in the past. I get spasms all the time not just in the chest area. If you wouldn't mind sharing your info that would be great. I was just concerned for myself since I read a study (I know they are all biased and not reliable) that women over 50 have a higher risk of heart attack and breast cancer on them but at this point I know I need something to control the b/p ,tachy and spasms.

Thanks again!

Rene

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I am in the EXACT same boat. Just last week I was prescribed a CCB for the first time, and I haven't taken it yet. I am very nervous.

I am on propranolol which helps at lowering the heart rate, and also stopping the overall "revved" up feeling I would otherwise have constantly, but unfortunately, the propranolol doesn't do enough for my inappropriate sinus tachycardia. And I can't take more because of the massive fatigue it causes.

I am wondering if anyone has problems with facial flushing on a CCB? When I first got sick, sudden flushing of my face was the first and worst symptom. It went on horribly for about a year, completely devastating me because I was young and very appalled by my red face. Fortunately, it has subsided almost entirely, so I am absolutely 100% unwilling to do anything to cause flushing.

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Hi Anna,

I read your post and wanted to know which CCB you are on. I also have super high b/p readings and possible variant angina. (Prinzmetal's). I've tried both the Norvasc and Cardizem CD in the past. I get spasms all the time not just in the chest area. If you wouldn't mind sharing your info that would be great. I was just concerned for myself since I read a study (I know they are all biased and not reliable) that women over 50 have a higher risk of heart attack and breast cancer on them but at this point I know I need something to control the b/p ,tachy and spasms.

Hi Rene

I am on Amlodipine 5mg :

GENERIC NAME: amlodipine

BRAND NAME: Norvasc

So it looks like the same med you have had before! To be honest I think taking any meds come with a down side, but I was getting to the point that I felt like I was having a heart atact most days, the CCB have stopped that. I did not read the study on CCB's and higher risk of breast cancer and heart attack in the over 50's females. will look into this.

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