jbk103 Posted March 29, 2022 Share Posted March 29, 2022 Good Morning! For those of you taking Verapamil I was wondering if any of you used it just during cluster periods. I am episodic usually about 1 month or the year with the bad years stretching to 3 months. I went to the doctor yesterday who gave be a steroid (massive headache this morning, do they cause bad bounce backs?) and verapamil once a day 120mg. He said I could take it all year around or could just try it out for a month. Didn’t know if others just took it around cluster time or if only effective year around. Quote Link to comment Share on other sites More sharing options...
jbk103 Posted March 29, 2022 Author Share Posted March 29, 2022 Before I was only 5 hour energy for pain but he didn’t like that and said it would cause more. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 29, 2022 Share Posted March 29, 2022 Hi jbk, I am also an episodic and take extended release verapamil 480mg split in two doses (240 am 240 pm). I take it year-round although I have read that some only start it when knowing a cycle is coming. 120 mg is a very low dosage and I doubt it will help at that mg. I am unsure if that is true of rapid release as I have never taken it however it seems to be preferred over the extended release. Quote Link to comment Share on other sites More sharing options...
jbk103 Posted March 29, 2022 Author Share Posted March 29, 2022 This is extended release that he gave me Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted March 29, 2022 Share Posted March 29, 2022 120 mg is a low dose for CH . Normally between 480 and 960 mg a day . If your doctor knows anything about CH he really should be prescribing you o2 as first line to abort attacks . Have you been given o2 . Plus if your doctor decides to increase your varapamil you really need to get an ECG , as it is a blood pressure medication and can play around with your heart 1 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted March 31, 2022 Share Posted March 31, 2022 Verapamil.. I currently take 360mg a day, 120 3 times a day, I have taken up to 1020 a day. The more I took the more side effects I had. When I was up around the 1020 it was the extended release. Now I take the standard (quick) release and can get good results with a lower dose. I am chronic so I take it all year round and I do play with my dose even though it is bad for you like Shaun said. You should have your doctor monitor you with ekg when making any changes to your does. I have read about some of our ECH friends here only taking it when in cycle and others all year round. I have also heard that it has stopped working after then stop and restart taking it again. That is the nature of the beast, what works today may not work tomorrow. I do not know how much harm the 5hr drinks can do, I have drank upwards of 8 to 10 a day at times when things got bad. The verapamil will also take some time to get into your system before you start to see any results. A lot of times you will get a prednisone dose pack to hold you over for about a week for the verapamil to kick in. Alos not the best for you to use prednisone to often but we do what we gotta do.. Other things to read up on that will help you are the vitamin D3, just vitamins that you should also monitor with occasional blood work to check your levels OXYGEN!! No harm to your body at all and works as the best abortive. Good clean fun! 1 Quote Link to comment Share on other sites More sharing options...
jbk103 Posted March 31, 2022 Author Share Posted March 31, 2022 Thanks guys. Started the steroid and had one bad the next day but then nothing the next two days other than light shadow. This is my first day off the steroid and second day on verapamil 120 extended. Light shadow this afternoon but nothing else yet. Have a follow up with doctor in 10 days for blood work Quote Link to comment Share on other sites More sharing options...
Tim Hogge Posted July 23, 2022 Share Posted July 23, 2022 I only take Verapamil during CH period. I feel like a lot of people have good results with oxygen but it never worked for me as an abortive. My best and lasting results came from strick dieting. Neuro- inflammation from foods is my biggest trigger. Gluten in particular for me. I've been able to control CH for years by avoiding foods that cause bloating essentially. And you can't sneak a cheat meal in their. I'm just not a fan of pills and being tethered to therapeutics. Good luck Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 23, 2022 Share Posted July 23, 2022 Tim, I just have to ask whether you have done oxygen with a fully optimized system -- O2 from a cylinder, not a machine (not a concentrator); a non-rebreather mask or better yet the mask designed for people with CH (called the "ClusterO2 Kit"); and a flow rate that can be increased to 25 lpm or more (the key here being that you can inhale fully each time without having to wait for the reservoir bag on the mask to refill). So many people have found that they really didn't have an optimized system, and that oxygen that hadn't worked for them without such a system, worked well when they had one). Quote Link to comment Share on other sites More sharing options...
Tim Hogge Posted July 26, 2022 Share Posted July 26, 2022 On 7/23/2022 at 10:44 AM, CHfather said: Tim, I just have to ask whether you have done oxygen with a fully optimized system Honestly I don't know! I have been in remission for years but I'm going through it now. The ERs O2 mask doesn't sound like what you describe. Before, I used O2 concentration machine. There wasn't cylinders at all. Hell, am an aircraft mechanic so I even tried on board O2 that didn't seem to do anything as an abortive. My guess I haven't use the coreect set up. I appreciate the insight for sure. I am doing a lot of catching up on CH info. Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 26, 2022 Share Posted July 26, 2022 Tim', there is a pretty long discussion about O2 here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. Concentrator isn't good, because there's still room air mixed with the O2 it delivers, and the flow rate on a concentrator is too low. This video shows you the basics. He is using the fancy mask (the O2ptimask or "ClusterO2 Kit"), but the principle is the same with a standard non-rebreather -- the bag fills and you empty it as you inhale. https://www.youtube.com/watch?v=PtFHRIQN17s&t=617s In the ER, they probably used a standard oxygen mask, with no bag. That's much less efficient than a non-rebreather. In the first link I gave you, there are some other tips. 1 Quote Link to comment Share on other sites More sharing options...
CaptChaos Posted August 9, 2022 Share Posted August 9, 2022 My neurologist prescribed Verapamil (120mg 2x/day) at the onset of a cluster period when I first saw him five or six years ago. Now that we know my body handles it well I still take the same dosage but I start it in the spring before any sings of a cluster since my CH usually stats in April. This seems to help a lot since it takes a while for verapamil to start working effectively. I saw a new headache specialist this year and she prescribed a tapered prednisone treatment on top of verapamil at the first sign of oncoming CH. I have had pretty good success with limiting the frequency, severity and duration of my headaches when using one or both. I seem to get much less of the teary eye, runny nose symptoms during attacks when I am on these drugs. Hopefully you found success with your treatment. 1 Quote Link to comment Share on other sites More sharing options...
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