SaltLife Posted February 8, 2022 Share Posted February 8, 2022 Been dealing with cluster headaches for over 20 years and the last cycle was two years ago. At that time I requested to be put on verapamil for prevention. My doc prescribed me 40mg twice a day. My cycle ended but I believe I was already at the end of the cycle when I started the verapamil. The cluster headaches have come back recently and I have been reading about the dosage MG’s and came across an article that people used 40mg’s in the morning then 80mg’s in the afternoon and another 80mg’s before bed with success. So my question is how much mg’s is everyone taking for prevention? Quote Link to comment Share on other sites More sharing options...
Cast Iron Posted February 8, 2022 Share Posted February 8, 2022 Hey SaltLife, My daily dose is 720 divided over three intakes of 240 in the morning, before lunch and after dinner. I have been increasing my dosage since my first diagnosis (was 240mg) as many will tell that one needs increasingly more to prevent the beast coming out. I've been up to 940mg at times, and some have had 1100mg a day, but this can not be done without consulting a cardiologist, in fact with every increase it is good to have your heart checked first (ECG) to see if it technically capable to deal with an increase. Besides this i am in the 'chronic camp' and have more meds as preventive (triptans). 1 Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted February 8, 2022 Share Posted February 8, 2022 This is the management suggestion from UP To Date, a widely used physician reference: Verapamil is the agent of choice for the initial preventive therapy of cluster headache. Glucocorticoids may be used adjunctively to help suppress attacks during the initial titration of verapamil or alone when cluster attacks are infrequent and short. (See 'Verapamil' below and 'Glucocorticoids' below.) Other agents that may be effective include galcanezumab, lithium, and topiramate. Verapamil — Verapamil is the drug of choice for prophylaxis of episodic and chronic cluster headache [3,43]. Verapamil is usually started at a total daily dose of 240 mg. Both the regular- and sustained-release formulations are useful, but no direct comparative studies are available. Patients treated with regular-release verapamil should receive the total dose in three divided doses a day, while those treated with the sustained-release formulation should receive two divided doses a day. There are multiple titration methods when treating cluster headache with verapamil: ●We suggest starting at 80 mg three times daily and increasing the total daily dose by 80 mg every 10 to 14 days as tolerated. ●As an alternate titration regimen, verapamil may be initiated with a short course of prednisone. In a short-term treatment trial [44], patients started verapamil at 40 mg three times daily and increased every three days up to a total daily dose of 360 mg. Those additionally assigned to daily prednisone 100 mg for five days and tapering by 20 mg every three days had fewer cluster attacks in the first week than those assigned to placebo (difference -2.4 attacks; 95% CI -4.8 to -0.03). Most patients respond to a total daily dose of 240 to 480 mg. However, clinical experience suggests that some patients require a total daily dose of up to 960 mg to obtain full prophylactic benefit [1,45]. In an early open label trial, titration up to a total daily verapamil dose of 1200 mg was employed [46]. Thus, an adequate verapamil trial for most patients entails use of a total daily dose of 480 mg to 960 mg before the medication is regarded as a failure. The benefit of verapamil is usually seen within two to three weeks. When the bout is ended, verapamil must not be ended abruptly but should be gradually reduced over two to four weeks depending on the dose and finally stopped. The use of high-dose verapamil is associated with an increased incidence of electrocardiographic (ECG) abnormalities, including heart block and bradycardia [47,48]. Therefore, an ECG should be obtained after each dose increment above a total daily dose of 480 mg. Some experts recommend getting a pretreatment ECG to screen for baseline cardiac arrhythmia [49]. Other side effects of verapamil include edema, gastrointestinal discomfort, constipation, dull headache, and gingival hyperplasia. However, verapamil is usually well tolerated and can be used safely in conjunction with sumatriptan, ergotamine, glucocorticoids, and other preventive agents. The efficacy of verapamil for prevention in cluster headache comes from observational experience and some trial data [3,46,50,51]. In one trial of 30 patients, daily verapamil at 360 mg in three divided doses reduced cluster headache attack frequency and analgesic consumption [43]. During the first week of treatment, the median number of daily attacks, the primary outcome measure, was similar for patients treated with verapamil and placebo (1.1 versus 1.7). However, in the second week, the median number of daily attacks was significantly lower for patients treated with verapamil (0.6 versus 1.7). Additionally, only those assigned to verapamil reported a reduction in headache frequency of >50 percent at two weeks (12 of 15 [80 percent] versus 0 of 15) 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 8, 2022 Share Posted February 8, 2022 (edited) Salt', you really should be considering the Vitamin D3 regimen for prevention. Just as effective as verapamil (probably consideably better, actually) , and a whole lot better for you! I think this is an up-to-date reference -- https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+and+cofactors+in+80+percent+of+people -- but I'm never really sure. Edited February 8, 2022 by CHfather 3 Quote Link to comment Share on other sites More sharing options...
SaltLife Posted February 9, 2022 Author Share Posted February 9, 2022 Thank you so much for the suggestions. I will make an appointment with a cardiologist ASAP. Chfather, I will start the D3 regime again. I tried it years ago with no success but I’m willing to try anything at this point. My doc also prescribed me nurtec because I have been using a sumatriptan shot daily for the last week and he was concerned about the side effects/ rebound headaches. Thanks again for the replies, this forum is a wealth of information. Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 9, 2022 Share Posted February 9, 2022 I and others will be interested to hear how helpful the nurtec is. You can split those sumatriptan shots so you're using only 1/3 to 1/2 as much. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ I thought I remembered from your previous posts that you have oxygen. No?? Quote Link to comment Share on other sites More sharing options...
EmpiresBurn Posted February 9, 2022 Share Posted February 9, 2022 I just started Verapamil and was prescribed 120mg once a day. Quote Link to comment Share on other sites More sharing options...
spiny Posted February 10, 2022 Share Posted February 10, 2022 I wonder about that script Empires. Long acting or extended relief is twice a day, Short acting - better for us type - is three times a day. Are you taking one pill once a day? Was it prescribed by a Neuro or Headache Specialist? Is it one 120mg pill? Quote Link to comment Share on other sites More sharing options...
EmpiresBurn Posted February 10, 2022 Share Posted February 10, 2022 8 hours ago, spiny said: I wonder about that script Empires. Long acting or extended relief is twice a day, Short acting - better for us type - is three times a day. Are you taking one pill once a day? Was it prescribed by a Neuro or Headache Specialist? Is it one 120mg pill? After seeing my Nero I originally got Topomax. That had little effect so I was proscribed Verapamil through my family doctor who is aware of my CH. However he only prescribed me 120mg once a day. Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted February 11, 2022 Share Posted February 11, 2022 13 hours ago, EmpiresBurn said: After seeing my Nero I originally got Topomax. That had little effect so I was proscribed Verapamil through my family doctor who is aware of my CH. However he only prescribed me 120mg once a day. Seems a low dose to have any affect on your CH to me but I'm no doctor ,and as spiny has said once a day doesn't seem right . Your dose should really be spread out over the day Quote Link to comment Share on other sites More sharing options...
SaltLife Posted February 11, 2022 Author Share Posted February 11, 2022 On 2/9/2022 at 8:45 AM, CHfather said: I and others will be interested to hear how helpful the nurtec is. You can split those sumatriptan shots so you're using only 1/3 to 1/2 as much. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ I thought I remembered from your previous posts that you have oxygen. No?? An update on the Nurtec. I was prescribed 75mg’s and eight tablets for the month. I took one Tuesday because the website said it’s a abortive and preventative medication. When I got a ch later that night it felt much more manageable 4/10 and felt similar to when I received a nerve block years ago. I could still feel it but much duller than before. The next day I got another attack like the one before(manageable) and took a nurtec and was back to normal within thirty minutes. Thursday I felt fine all day long until when I was going to bed, I felt it coming but it wasn’t that bad. I took some migraine medicine and fell right asleep. Today I felt fine until midday and got a bad attack 8/10. Took the Nurtec but I think it was already to late as it didn’t help and ended up using another shot. I’m not sure if the Nurtec has worn off because I didn’t take anything Thursday and that’s why I got another bad ch. My insurance only covers eight pills of the Nurtec a month so I don’t know how much longer I will be on it but I feel like it did take the edge off for a couple days and gave me a break for the shots. Hope this helps anyone that had questions. 3 Quote Link to comment Share on other sites More sharing options...
charles87sf Posted February 14, 2022 Share Posted February 14, 2022 I am on Verapamil 120mg once a day. I take it at night along with the rest of my meds. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.