dehabel Posted June 11, 2020 Share Posted June 11, 2020 So, I know so many of you are very familiar with the D3 deal, but for those who aren't I want to give a play by play of what has happened to me thus far. Eight years in remission - cycles typically hit twice a year - spring/fall for 8-10 weeks. Thought they were gone and on May 1st I felt it coming, thought I would die. Very mild at first, until about two weeks in and then it came full force. Imitrex zaps them out right away, I can even take it as a preventative at bed time - I do not like to do it, the drug - all drugs scare me. I started reading about the D3 stuff, so on Friday my husband got me some D3 gummies. I took 20,000 IU of them and on Saturday felt great. Got a headache Sat night after taking 50,000 IU - finally on Monday got all vitamins needed. Sunday - 50,000 UI D3 - headaches did not hit until Monday morning at 5 am Monday - started full regime - no headaches Sunday night until Monday morning at 5 am, hit with three by 8 am - the one at 8 am turned into a two day headache headache from morning still there, goes in and out. Woke up in the night twice by headaches - pretty severe, took an Imitrex injection on second one Tuesday -wake up with same lingering headache so I go to walk-in clinic- gives me Torodol shot and something that sounds like phenigran, come home sleep wake up with cluster headache Imitrex shot and all gone - take second dose of vitamins - go to bed - woken up in middle of the night by cluster, work through it, pretty severe go back to sleep - hit again, take an Imitrex injection, headache gone Weds - no headache in morning or throgh day, just stabbing pains every so often as if my cluster spell is exiting (that is how I know they are going, weird stabbing almost buzzing sometimes pains all throguhout my head) This continues all day take vitamins at night and get woken by two super mild clusters - so mild, I do not even get out of bed just talk it away and both are gone by 15 minutes Today - no pain, only the weird stabbing sensation every so often - no Imitrex in over 36 hours...I hope this is all a good sign. Will take the vitamins again tonight and see what the night holds. Sleep is oh so scary! I hope this helps someone. Quote Link to comment Share on other sites More sharing options...
jon019 Posted June 11, 2020 Share Posted June 11, 2020 OXYGEN.....OXYGEN.....OXYGEN..... .......and in case i forgot to mention: OXYGEN! Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 11, 2020 Author Share Posted June 11, 2020 Jon019 doctor tomorrow, will ask for prescrition Thank you! 2 Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 12, 2020 Share Posted June 12, 2020 I second the oxygen. Also, give the vitamins about two or three weeks for full effect Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 12, 2020 Share Posted June 12, 2020 I second the oxygen. Also, give the vitamins about two or three weeks for full effect Quote Link to comment Share on other sites More sharing options...
FunTimes Posted June 12, 2020 Share Posted June 12, 2020 I have added benadryl to the rest of the D3 I take and that helps me in the sprint time with underlying allergies that I do not show any symptoms of having . 3 25mg a day and then at night I will take Melatonin to help with the ones that wake you up. This could maybe help knock one or 2 more hits off your list for the day. I can not remember if you can use the 5hr drinks but I will drink one of them as well for the harder hitting clusters that wake me up, they do not keep me awake at all. Like Jon siad.. get that oxygen, if the doc will not give you the script we have the welding setup we can help you with. 1 Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 12, 2020 Author Share Posted June 12, 2020 Thanks! I have never tried a five hour drink, but I will take a super strong shot of coffee. I will go grab a few this morning after my appointment. Last night was rough, up six times, but not near as intense as normal. I would not wish these things on my worst enemy. Quote Link to comment Share on other sites More sharing options...
FunTimes Posted June 12, 2020 Share Posted June 12, 2020 I like to use the 5rh drinks for the size but any monster, rockstar and strong cold coffee type should help as long as it has caffeine and taurine. the 5hr drink you can down like a shot, the others are larger cans, some can drink half a can and save it for the next hit, I like the one and done approach. Good luck with the doc today Quote Link to comment Share on other sites More sharing options...
spiny Posted June 12, 2020 Share Posted June 12, 2020 If you can't hack the Energy drinks, I can't, strong coffee works well for me. I keep it in the fridge. Left to its' own devices, I am purely nocturnal. Yes, it makes you hate to go to bed! Scary just thinking about it some days. I wind up sleeping in the mans recliner in high cycle as it wakes me sooner when I get hit and and I can avoid some of them altogether that way if I hold my something just right. Not sure what it is, but some nights I can skip one in the chair and that is nice. It sounds like you are seeing good results here, am I correct? How do you feel about the results? The addition of Benadryl will be a nice help. I take it in the am and at bedtime I take two, as directed. In the am, just one so that I do not feel sleepy. Melatonin can be a big help too for many. Not at the 3mg dose though. I would suggest starting with 10mg. You can work up to 25 -30mg if needed. I do recommend caution when doing both if you are not accustomed to either of them. Just to be safe so you do not find yourself stumbling in the night. With that in mind, if they are new to you, I would suggest starting with 2 Benadryl at bedtime. See how that goes. When you get up with a hit at night and feel fine, not wobbly or such, you could take 10mg of Melatonin. When in cycle, I take 2 Benadryl at bedtime and 10mg Melatonin. After the second hit at 10:30, I will take another Melatonin. Then after the 1am hit, I take another Melatonin. If in high cycle, I may take 20mg at 10:30. It can help avoid the 1am hit. The Melatonin seems to make them more mild hits. 1 Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 12, 2020 Author Share Posted June 12, 2020 I feel like the D3 thing is working, but I have no patience and no pain tolerance, so I want it to stop now - just like all of us do. For years I have just rocked and cried through the pain. I think the hardest part about this time is I thought they were gone. Thank you for all of the input! Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 13, 2020 Share Posted June 13, 2020 @dehabel I can only imagine the depressing feeling you are going through. Thinking they are over only for them to come back. The D3 really helps a lot of people. Some find complete relief with it. Keep us updated kat Quote Link to comment Share on other sites More sharing options...
Rod H Posted June 13, 2020 Share Posted June 13, 2020 Dehabel have you tried the prednisone yet? I find it is a good crutch to get some pain free time. It's not gonna stop your cycle but it will buy you some time for the d3 and verapamil kick in. As far as patience goes I'm sorry but your gonna need it the only thing that I've found that is fast acting with this is oxygen and caffeine. And that doesn't stop the cycle either. Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 13, 2020 Author Share Posted June 13, 2020 I got some disturbing news at the dr yesterday and forgot to ask for oxygen. I will call on Monday. I feel like my spell is leaving, will start the steroids tonight. Last night got two, they were so mild I only had to put a cold coke can on my head and ask forit to go away for about 15 minutes each. Crossing my fingers less than a week left. Quote Link to comment Share on other sites More sharing options...
Rod H Posted June 13, 2020 Share Posted June 13, 2020 You need o2 it is a game changer and life saver. Used properly it will change your outlook on clusters. Quote Link to comment Share on other sites More sharing options...
xxx Posted June 15, 2020 Share Posted June 15, 2020 Dehabel, Off hand it appears you're starting to respond to the anti-inflammatory regimen. Steroids tend to slow the response to vitamin D3 and all the cofactors. That said when push comes to shove, steroids do work... it's a tradeoff. Oxygen and a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours during the day and at bedtime will help. Just be careful and not drive as this much Diphenhydramine will make you drowsy. Many CHers who need to drive during the day have found it's best to wait until you've home for the day then take 50 mg as you walk through the door and another 50 mg at bedtime. Take care and please keep us posted. V/R, Batch 3 Quote Link to comment Share on other sites More sharing options...
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