Celtic Cluster Posted September 7, 2021 Share Posted September 7, 2021 Guys please help. I’m 12 years into Clusters but this period has been so long and so intense and I am all out of energy, methods and will power. I have access to everything that is recommended on here (never had any success with verapamil and prednisone). I just can’t find the right balance to get any relief. Plus I can’t manage the 5 day gap with no sumatriptan as the oxygen isn’t able to fight it alone. My period/season bizarrely jumped to summer for the first time and my current headache schedule is 2 during the night and 1 in the morning (with other less concerning sporadically triggered attacks). I need to get some rest so if anyone has a trick for the attacks that occur in the middle of the night that would be a start please. I’m using taking one whole tank of oxygen most nights and it can’t be good for me. I even have Emgality here that I’ve never tried along with a Sphenopalatine Ganglion Block which may have to be my next move if you guys recommend it. Thanks a lot guys. Quote Link to comment Share on other sites More sharing options...
spiny Posted September 7, 2021 Share Posted September 7, 2021 Hi Celtic! Welcome to the club! Have you read the blue banner at the top of this page? It will give you a lot of basic info. I would not worry about the O2 usage. The main thing is to have your system optimized with high flow pure O2 at 15 to 25LPM and a non-rebreather mask. The Cluster mask is what most of us use. You have to work at your breathing, not just breathe. As in exhale with force, till you wheeze a bit, then inhale deeply. hold a few seconds and repeat. You can begin this on your way to the O2. With nocturnal hits, you want to get there ASAP too. You will find your own pace and way for each hit. It likely will not be the same for each, so try different paces and when one begins to ease the pain, stick with that method for that hit. May will down a caffeine drink with the O2 or just prior. As in hit the fridge, grab it and go. You can chug as you go. You must stay on about 5 or 10 minutes after all the pain is gone. Otherwise, you risk the hit returning. 'Post' breathing is very important. For daytime hits, do the same. On occasion, you may find that the caffeine is sufficient and O2 is not needed. Pred is a bridging med that you take for a week or 3 and your Verap kicks in for lasting relief. Pred is not a safe drug to take for a long time. It causes your hips and maybe shoulders to lose the ball part of the joint - it dies. Then you need a hip replacement. So, use, but sparingly. Verapamil is one that CHers tend to take very high doses of compared to other patients. As in up to about 960mg/day. Some can't take those levels of it due to low blood pressure. It is great for many when it works. For shadows, use ginger: tea, candy, etc. It kills them. As will caffeine. But caffeine gets tiring. There is a lot more to share, but this will get you going!! ATB ! 1 Quote Link to comment Share on other sites More sharing options...
Celtic Cluster Posted September 7, 2021 Author Share Posted September 7, 2021 Spiny, I can’t thank you enough for taking the time out to respond in such detail. I’ve only had access to oxygen for around 4 or 5 years now and have loved the purity and effectiveness of it as a medication but have noticed the headaches return sooner alright. I’ve often read about staying on for 5-10 mins after but always feared running out of oxygen. I will focus more on this as well as the rest of your info. I can’t help but notice that the oxygen seems to bring the headache on stronger/quicker but does help relieve it quicker too. I often wondered was that common with others. Are energy drinks a good source of caffeine or would you recommend coffee? And what’s the idea with the candy? Thanks so much. Quote Link to comment Share on other sites More sharing options...
spiny Posted September 7, 2021 Share Posted September 7, 2021 Energy drinks or shots are what most people use. I am for coffee as the energy stuff comes right back up for me. I do use V8 Energy during the day a good bit and always have a cup-a-joe at 5pm. Just for my head. Ginger is for shadows. Light hits that are a minimal bother, but still drag you down. Don't know why it works. Don't really care. Just know that it does work very well. And who will give you a hard time for eating it? No one I would not think, so no awkward questions to answer. 2 Quote Link to comment Share on other sites More sharing options...
Celtic Cluster Posted September 7, 2021 Author Share Posted September 7, 2021 Great, thanks a lot. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 8, 2021 Share Posted September 8, 2021 7 hours ago, Celtic Cluster said: Guys please help. I’m 12 years into Clusters but this period has been so long and so intense and I am all out of energy, methods and will power. I have access to everything that is recommended on here (never had any success with verapamil and prednisone). I just can’t find the right balance to get any relief. Plus I can’t manage the 5 day gap with no sumatriptan as the oxygen isn’t able to fight it alone. My period/season bizarrely jumped to summer for the first time and my current headache schedule is 2 during the night and 1 in the morning (with other less concerning sporadically triggered attacks). I need to get some rest so if anyone has a trick for the attacks that occur in the middle of the night that would be a start please. I’m using taking one whole tank of oxygen most nights and it can’t be good for me. I even have Emgality here that I’ve never tried along with a Sphenopalatine Ganglion Block which may have to be my next move if you guys recommend it. Thanks a lot guys. Hi Celtic, I wish I could be more helpful I just wanted to hop on here and say at the very least that it sounds like Spiny gave you some good info. (Never heard of the ginger thing so I'm going to try that) There is a good video on here that goes over different breathing techniques with the 02 that maybe you could check out (if you haven't already). Just learned myself that these lovely headaches like to change things up so maybe you need to change something up too? I know that's not much help.. Just don't want you to feel alone. Feel better soon! 2 Quote Link to comment Share on other sites More sharing options...
Hoodoo Posted September 8, 2021 Share Posted September 8, 2021 Sorry to hear the struggle. My cycle jumped to summer as well about 3 weeks ago. There must be something in the air. 1 Quote Link to comment Share on other sites More sharing options...
xBoss Posted September 8, 2021 Share Posted September 8, 2021 Try out busting. Sorry it's been a mess for you. It's been a mess lately for many of us. GL! 4 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted September 8, 2021 Share Posted September 8, 2021 What they said (including xBoss!), and an odd thing about the practice of aborting a wake up hit with the addition of an energy shot/drink/caffeine that the great and wonderful Spiny mentioned, is that many of us have noted we can still go back to sleep right after??!! Why? How? It's one of history's great mysteries. 3 Quote Link to comment Share on other sites More sharing options...
Celtic Cluster Posted September 8, 2021 Author Share Posted September 8, 2021 Thanks so much guys. You are a great bunch of people and very generous with your time. Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted September 8, 2021 Share Posted September 8, 2021 These guys on here will tell you. Ive just come out of a rouge cycle and thanks to their advise about how to use 02 properly i managed the pain alot better. Plus managed to get off the triptan injections you need to stick with the 02 watch the o2 video on here . But ask around about other things that can help with your CH attacks . Like i said the guys on here are sent from GOD 2 Quote Link to comment Share on other sites More sharing options...
Celtic Cluster Posted September 9, 2021 Author Share Posted September 9, 2021 They really are, Shaun. After further reading it could very well have been slapbacks that I was suffering from. I couldn’t manage the 5 days in between doses and fell back to the odd injection as the pain and amount of headaches were too much. I’m taking it day by day now but have finally managed some good sleep the last 2 nights. I too am a huge advocate of O2 and announce that at every opportunity. Do you have a link to this O2 video you guys speak of please? I can’t seem to find it. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 9, 2021 Share Posted September 9, 2021 3 hours ago, Celtic Cluster said: They really are, Shaun. After further reading it could very well have been slapbacks that I was suffering from. I couldn’t manage the 5 days in between doses and fell back to the odd injection as the pain and amount of headaches were too much. I’m taking it day by day now but have finally managed some good sleep the last 2 nights. I too am a huge advocate of O2 and announce that at every opportunity. Do you have a link to this O2 video you guys speak of please? I can’t seem to find it. I messaged you the video. Hope you are doing better... 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted September 10, 2021 Share Posted September 10, 2021 On 9/8/2021 at 10:27 AM, Shaun brearley said: the guys on here are sent from GOD ...and some of the gals on here (like Spiny) are Gods . (Me: guy) 2 1 Quote Link to comment Share on other sites More sharing options...
Celtic Cluster Posted September 14, 2021 Author Share Posted September 14, 2021 So people, I’ve got some relief over here. Not completely clear but good/welcomed relief. I’m definitely putting it down to this newly discovered phrase “slap backs”!! They really are a thing and they’re horrible! Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 14, 2021 Share Posted September 14, 2021 40 minutes ago, Celtic Cluster said: So people, I’ve got some relief over here. Not completely clear but good/welcomed relief. I’m definitely putting it down to this newly discovered phrase “slap backs”!! They really are a thing and they’re horrible! I'm really glad you have found some relief! I can't recall if you had said that you were taking D3? If not I think you should give it a try it can't hurt? I recently started it and it hasn't eliminated my bangers but it has cut down the intensity and that's something.. 1 Quote Link to comment Share on other sites More sharing options...
Celtic Cluster Posted September 14, 2021 Author Share Posted September 14, 2021 Just yesterday I started taking 1 x D3 (50 mcg) per day. Is that what’s recommended?! Quote Link to comment Share on other sites More sharing options...
FunTimes Posted September 15, 2021 Share Posted September 15, 2021 Celtic you will want to take all the other vitamins along with the D3. Here is a link and you can always reach out to Batch (XXX) on this site, he is the one who invented this regimen https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people 1 Quote Link to comment Share on other sites More sharing options...
Celtic Cluster Posted September 15, 2021 Author Share Posted September 15, 2021 Great, thanks very much! Quote Link to comment Share on other sites More sharing options...
stella Posted September 20, 2021 Share Posted September 20, 2021 Ηello!I don't know if it will give you strength I have been in pain since the beginning of June! I am waiting for benadryl and mm are hard to find here in Greece! I would recommend you try the D3 shape or benadryl with keto diet to see what helps you and if you can not relieve try mm! Quote Link to comment Share on other sites More sharing options...
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