DNM4684 Posted April 8, 2016 Share Posted April 8, 2016 Long time ch sufferer with a recent diagnosis. I have so much to say but mainly I'm just so happy to have found people whom understand not the "oh I get migraines, I know the pain". I just got my diagnosis (finally received to know but scared for the future) and I'm starting imitrex tabs but I'm not sure if they made things worse yesterday morning when I had a nightmare of a nightmare of a night/morning. Any advice to a newly diagnosed individual? I am certainly going to get oxygen. I'm from Connecticut, anyone else around me? Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 8, 2016 Share Posted April 8, 2016 Well, here's what Peter Goadsby, who is an expert in the pharmaceutical treatment of CH, says about imitrex tabs: >>>Sumatriptan 6 mg subcutaneous, sumatriptan 20mg intranasal, and zolmitriptan 5 mg intranasal are effective in the acute treatment of cluster headache (RCT). Three doses of zolmitriptanin twenty-four hours are acceptable. There is no evidence to support the use of oral triptans in CH.<<< So your doc is not off to a good start. (Google [Goadsby cluster headache] to find that article, "Treatment of Cluster Headache."] Get that oxygen ASAP. You have a prescription? Typically, some preventive is prescribed along with an abortive. Most often, that's verapamil. For now, I would think you'd want a preventive pharma med, too. In the long run, most people here are not pharma enthusiasts. Start the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Try an energy shot (such as 5-Hour Energy) at the first sign of an attack. Read the numbered files in the ClusterBuster Files section here. You might want to check the "Recommended Doctor" list here to see if there's one near you: https://clusterbusters.org/cluster-resources/ Get back to us! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted April 8, 2016 Share Posted April 8, 2016 Hi DN, What CHf said. It's well known among headache specialists and CH'ers who hang around theses forums that imitrex oral tabs are too slow acting for the vast majority of CH'ers, whereas if you're going to use imitrex, injections tend to be very effective for aborting attacks (watch out for potential rebounds and other side effects though). Unfortunately issuing a tab prescription is still a common mistake made by GPs and so forth who don't have much or any clinical experience or training regarding CH. Understood why you'd feel terror regarding the future, but good news: LOTS of us CH'ers have actually beaten this affliction back very significantly, preventing entire cycles even, with the non pharma approaches CHf has mentioned, and there's a good chance you will be able to also. Besides being non-toxic, the non pharma actually turns out to be more effective for most of us. Meantime, if you continue with imitrex and switch to injections, the extending your imitrex tip that outlines how to conserve supply with partial doses could save your hiney. Quote Link to comment Share on other sites More sharing options...
DNM4684 Posted April 8, 2016 Author Share Posted April 8, 2016 My gp was the one who wrote the tablet script but she wanted to write it for spray but she wanted to make sure I'd get medication that evening without insurance Hassell. I'm pretty sure it didn't help. About 2 hours after I took it and my first attack receded, a second more powerful attack crippled me for about half an hour and then gone. I called my insurance to see if they cover oxygen for ch but I think I got a moron rep because I'm pretty sure she marked it as equipment because she they would cover 50% after I hit my 4k deductible. This cluster that started 2 weeks is relentless and causing stress and fear. My boss didn't get what the fuss about a headache was all about when I was aggressive, barely able to talk and inconpactitated during a phone call to find out why I was late with a delivery. I had to instead of hiding during an attack have my gI'll friend drive me in so he could see first hand what the fuss is all about. The good news is he has seen what the fuss is about and is off my case. I am planning on getting an welding oxygen setup asap. Any advice? I know they sell a specific mask to use, a non-rebreather. Quote Link to comment Share on other sites More sharing options...
DNM4684 Posted April 8, 2016 Author Share Posted April 8, 2016 My gp was the one who wrote the tablet script but she wanted to write it for spray but she wanted to make sure I'd get medication that evening without insurance Hassell. I'm pretty sure it didn't help. About 2 hours after I took it and my first attack receded, a second more powerful attack crippled me for about half an hour and then gone. I called my insurance to see if they cover oxygen for ch but I think I got a moron rep because I'm pretty sure she marked it as equipment because she they would cover 50% after I hit my 4k deductible. This cluster that started 2 weeks is relentless and causing stress and fear. My boss didn't get what the fuss about a headache was all about when I was aggressive, barely able to talk and inconpactitated during a phone call to find out why I was late with a delivery. I had to instead of hiding during an attack have my gI'll friend drive me in so he could see first hand what the fuss is all about. The good news is he has seen what the fuss is about and is off my case. I am planning on getting an welding oxygen setup asap. Any advice? I know they sell a specific mask to use, a non-rebreather. Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 8, 2016 Share Posted April 8, 2016 Yes, you want a non-rebreather mask. The best one, by far, is this one: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit But I don't think they have a fast delivery option. I'd look at amazon.com and see how fast you can get a basic mask. This is the regulator you want: http://www.harborfreight.com/oxygen-regulator-94846.html It's sold at Harbor Freight. There are a lot of Harbor Freight stores in CT; check the store locator at the website. Many people use welding oxygen without any problems. I have to add the disclaimer that I'm not recommending it -- again, saying that I have seen no issues with it in the six years I've been here and in some very close-up situations. In many places, it's hard to find welding-oxygen suppliers that are open on the weekend. The standard advice is that when you go to buy it, do not mention that you want it for medical use. A sixty-cubic-foot tank will be good for a while, but if you can handle a big tank, 80 or 100 or 120 cu ft is preferable. These are big, heavy, and unwieldy, and you have to schlep them back to get them refilled/exchanged. You will want a rolling cart, and you might also want a smaller tank, say 40 cu ft, that you could take in your car, to work, etc. Don't buy a regulator there: they're very expensive and they don't come with the adapter you need to attach the tubing from your mask. Some Harbor Freight stores sell oxygen tanks. I've never seen anything larger than 20 cu ft there, and I've never seen them sold with the O2 in them. You might check to see what they have if you go there. Quote Link to comment Share on other sites More sharing options...
aneurysmalex Posted April 8, 2016 Share Posted April 8, 2016 Welcome DNM4684 I am glad you are here! Now you can meet all kinds of folks that share your struggle. Quote Link to comment Share on other sites More sharing options...
spiny Posted April 9, 2016 Share Posted April 9, 2016 I just ordered a CH mask from our sister site and it was overnighted to me. So, it likely would be faster than Amazon for sure.You could try calling today, but Monday should be a sure bet. It ran about $30.00 total if I recall correctly. Welcome aboard DNM. Lots of great info here and kind folks to share it. Clusterbuster Files are loaded with good reading. At the top of this board is a list of doctors you might want to check out if you want a specialist. Quote Link to comment Share on other sites More sharing options...
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