Shaun brearley Posted August 10, 2021 Share Posted August 10, 2021 Need help . Sorry im new on here im from uk im 52 years old we are a bit behind on treatment in uk for CH . I have suffered since i was 21 with CH but only got med when i was 42 so had to suffer without till then now on Topiramate . Home oxygen plus samitriptan injections . Ive gone in to a cycle thats really intense im getting 5 to 6 attacks aday at present . Any ideas please , Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 10, 2021 Share Posted August 10, 2021 Having the home oxygen is a huge plus. Make sure your using it correctly up around 20 lps with a non rebreather mask. Be careful with the sumatriptan injections you may be causing yourself more headaches if you are using them a lot. You can look on this site how to split them and maybe cut back on the amount your using. Look into the vitamin D3 that alone can hep some get pain free. Energy drinks like a 5hr can also help at the onset of the cluster to give the oxygen a head start. Click on the blue banner above for a rundown on what this site is about, you will find a tun of information here and everyone iw here to help each other out. Poke around and ask questions. Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted August 11, 2021 Author Share Posted August 11, 2021 Thanks alot . Whats this vitamin D3 every1 talks about ? Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 11, 2021 Share Posted August 11, 2021 The Vitamin d regimen is a hand full of different vitamins taken daily to raise you Vitamin D levels in your system to reduce or eliminate cluster headaches and also has other health benefits. It was created by a member on this site Batch who now goes by the name XXX. If you type vitamin D in the search bar you will find all kinds of post with people who are using this to fight clusters. Here is also a link that will take you to information about it. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people XXX is on this site just about every day and is so helpful to everyone. If you do want to give this a try and have any questions I am sure he would answer them for you. 1 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted August 11, 2021 Author Share Posted August 11, 2021 Thanks so much . Will try anything Quote Link to comment Share on other sites More sharing options...
kat_92 Posted August 20, 2021 Share Posted August 20, 2021 Hey Shaun. Try purchasing ginger capsules. I have a really good organic brand that I get at a store here in the states. I usually take 2 capsules a day. I’m also on the d3 regimen all year around. I would look into that ASAP 1 Quote Link to comment Share on other sites More sharing options...
devonrex Posted August 21, 2021 Share Posted August 21, 2021 Out of curiosity, have you or had you stopped the topiramate recently? Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted August 23, 2021 Author Share Posted August 23, 2021 Yea id stopped the topiramate when id come out of my cycle . But back on it know . Dont like being on it as it slows me down Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted August 23, 2021 Author Share Posted August 23, 2021 Thanks Kat gonna give the Ginger a go with everything else im gonna try 1 Quote Link to comment Share on other sites More sharing options...
devonrex Posted August 25, 2021 Share Posted August 25, 2021 I feel that, my pharmacist called it "The California drug" because it can make you skinny and stupid. I was only asking, as anecdotally, I and I know several others here have had our cycles go into overdrive after stopping it. I had to stop it because I got a kidney stone and within a few weeks had gone from 3-4 a week to up to 6 or more a day with an increased intensity. Though, I am chronic and not episodic. All that aside, the advice here is solid. You can also try meditation, or guided. I used to think it was hooey, but it does help to relieve that anxiety and other feelings that come after a bad hit etc. The other thing not mentioned here is energy drinks, many swear by the 5 hr energy, chugged at the start, the same with like rockstar or monster. I stick to the sugar free options and might want to talk to a doc before spiking caffeine and other intake with them. 2 Quote Link to comment Share on other sites More sharing options...
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