jpjd59 Posted March 13, 2012 Report Share Posted March 13, 2012 I am new to this site (diagnosed with POTS in November 2011). I just saw a specialist today who wants me to start taking Verapamil (a calcium channel blocker). (I have previously had adverse reactions to beta blockers and fludrocortisone). Has anyone tried this drug and, if so, have you had good or bad reactions to it?Thanks!! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 14, 2012 Report Share Posted March 14, 2012 I take large amounts of one. I take it for my Raynauds, chest pain, and for Blood pressure. Cardizem CD 240 morning 240 noon even though my bp is low in the morning, my other meds bring up my BP along with my body position. Sure beats popping nitro ~ I can't tolerate betta blockers and fludrocrortisone either. I started slow and worked my way up. Only problem is when in the hospital, none of the pharmacies want to give it to me the way it is prescribed for me and i leave all messed up. I can't take generic, it messes me all up. it's not the same. Good Luck ~ Welcome Aboard ~Bellamia ~ Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 14, 2012 Report Share Posted March 14, 2012 I was treated with Verapimil for my migraines with good success and no side effects back in 2008. I stopped because we were trying to see what would happen. I was good for a while. When all my symptoms flared again my POTS neuro wouldn't put me on it again because it can increase some people's heart rate. But, I would have been willing to try it again. Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 14, 2012 Report Share Posted March 14, 2012 I was on Cardizem for a while, which unfortunately did not work for me. It made me very hypotensive and actually MORE tachycardic (the doctors were scratching their head at this one). It was not the worst drug I ever took though, and I found it far preferable to beta blockers which I could not tolerate at all. Everyone is different though, and it might really work for some people! You never know until you try it . Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 15, 2012 Report Share Posted March 15, 2012 Some say it helps with brain fog but increases hypotension and feelings of faintness. Quote Link to comment Share on other sites More sharing options...
peregrine Posted March 15, 2012 Report Share Posted March 15, 2012 I was on diltiazem for three months for what my cardiologist said was just atrial tachycardia but probably also something autonomic; it made my symptoms worse, though not severely so (although it did slow the heart rate) but the big issue was that it caused edema, so I stopped taking it. I'll note that in my case simply slowing the heart rate down didn't cause it to worsen my issues, since the beta blockers I'm on now do slow the heart, but also make me feel much better! YMMV. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 15, 2012 Report Share Posted March 15, 2012 My ankles do swell, but as long as it is it not pitting edema and I'm watched closely that is OK. I was told it can tend to give me tachy (more) but, I seem to think I stay about the same. I get more benefits taking it. Where as before I used to be freezing all of the time. I'm still cold, but I now don't have to keep my mitten on at our visits and he doesn't have to turn up the heat just for my visit. We do what we have to do in this illness and it's not always easy.Bellamia ~ Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted March 16, 2012 Author Report Share Posted March 16, 2012 Well I started the Verapamil yesterday and by last night I was feeling awful (skin felt like it was burning and I just felt generally worse). I woke up this morning still feeling awful and really dizzy. I have a call into the doctor's office to see if these are normal side effects that will go away. I am soooo tired of trying new meds and having reactions to everyone of them!!!Anyone else have symptoms like these on a calcium channel blocker?? Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 16, 2012 Report Share Posted March 16, 2012 Are u starting out slow? Headaches are always worse with me with any "NEW" med and I'm a dizzy dame always ~ Hope it gets better soon. Think positive and happy thoughts, especially if u don't have many choices like myself. ; ) What color is the pill? There is a belief if the pill is a color u like ( color therapy ) it will magically make you feel better ~ I love the color of mine. I'll see if I can find the article. I DO KNOW HOW YOU FEEL, as I can't take beta blockers. ( @ least all I tried) They were all blah white. I love color and not nightmares that they gave me ~ But I LOVE M & M'S ~ http://www.colormatters.com/color-symbolism/the-color-of-medications Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted March 17, 2012 Report Share Posted March 17, 2012 From the first part of the article (not the latter part), it sounds to me like I need a blue pill. In fact, and not in accordance with what the article suggests, the best results I've had are on red and white pills and sometimes, an orange pill; other times a green or black pill. Does anyone care about taste? As far as taste, I like bitter so when it's a bitter pill to swallow, I do just fine!Not sure I'd like Verapamil. I have some idea that they do in fact work on people with problems with the cold as someone mentioned above. Guess they should be red ... Quote Link to comment Share on other sites More sharing options...
issie Posted March 17, 2012 Report Share Posted March 17, 2012 I think color does make a difference. I used to do home interior decorating (one of my many jobs/hobbies) and there is a chart with colors in relationship to people's personalities. I wish I knew what I did with it. It was really pretty "right on", with describing people and their favorite color. Purple in regard to health - is supposed to speed healing. That's why I'm always talking about finding my "purple band-aid". LOL Quote Link to comment Share on other sites More sharing options...
Gracefulprincess Posted March 17, 2012 Report Share Posted March 17, 2012 to reply to your original question about being put on a calcium channel blocker.....I've been on one for years...probably like 4 or so. I can't remember exactly but my original cardiologist put me on Cardizem 24hr, when i told him i was i having alot of severe chest pain. And he said i was having coronary artery spasms. I can't remember what dose he started me on, but i'm sure it was low, but eventually it ended up being increased to 300mg once at night. Then i started seeing another cardioloigst (a partner of his), and he didn't like me being on such a high dose...so he tried to lower it. He even tried lowering it to 120mg, but the chest pain got much worse and i couldnt' tolerate it. So we settled on 240mg. Which i've been on till recently.I had to switch drs again, because of how i was being treated. And my current one i see now, thinks that the Cardizem is what is making my heartrate go too low. So he had me slowly go off of Cardizem and go on Norvasc (another calcium channel blocker). He said that Norvasc shouldn't lower my heart rate, but could cause more low blood pressure issues for me. Low blood pressure is one of the side effects. So for the past few months i've been trying the norvasc and it's been making my bp too low most of the time. And my heartrate is still going to low.. We've tried cutting the dose in half and that hasn't helped much at all. At least i know that the Cardizem isn't what' causing the low heart rate. Now we just have to figure out what to do about the Norvasc, I'll probably go back on the Cardizem. I'll find out in a few weeks...till then i just have to tough it out. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 17, 2012 Report Share Posted March 17, 2012 jpjd59,Have you looked into Mast Cell Diseases? Your reactions to this many classes of meds is odd and the burning skin in reaction to this med sounds like a possible mast cell reaction. There are others on this forum that know more about mast cell issues than I do but it might be worth the research and testing. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 18, 2012 Report Share Posted March 18, 2012 Something I found out that no one ever told me was don't take with Grapfruit juice ~ My PC, advised me to stay away from citrus in general when taking my CCB when I brought it up. Anyway, did youcheck out this. http://www.nlm.nih.g...ml#side-effectsI WAS TOLD, to always give it a chance unless my throat was closing up, a itching welting rash was erupting, I was falling down like a drunk, or having triple vision. When it's the weekend I call the pharmacy and ask them, as they have a better PDR than what they send you home with when you pick up the med. IF they are concerned, they will say it's time to call your doctor or once get to the nearest ER..I DO HAVE MAST CELL. It's an ITCH! lol ~ Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted March 18, 2012 Author Report Share Posted March 18, 2012 What is "mast cell"? Is that part of POTS or a different condition? How is it treated? I Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 19, 2012 Report Share Posted March 19, 2012 The following was copied from The Mastocytosis Society website Home Page: (http://www.tmsforacure.org/welcome.php)So... What are Mast Cell Diseases??? Mast cell diseases include mastocytosis, where the body produces too many mast cells, and mast cell activation syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers, and leukotriene inhibitors, while anaphylaxis is a medical emergency requiring epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver, and spleen. Most patients with mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur, which may require chemotherapy. A diagnosis of mastocytosis is confirmed by a bone marrow or skin biopsy. MCAS patients do not fulfill all criteria for mastocytosis but exhibit symptoms, may or may not have increased measurable mast cell mediators (commonly tryptase, histamine or its metabolites) during or shortly after an attack and do respond to the same medications that patients with mastocytosis do. For more detailed information on Mastocytosis and Mast Cell Diseases please refer to our Research Page (Coming Soon!!!) Quote Link to comment Share on other sites More sharing options...
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