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fattestfoot joined the community
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Oxygen is the first thing I would get my hands on. It seems to be the hardest thing to get but works the best. You will need to call and get your neurologist to give you a prescription for it and find a vendor to deliver it to your house. you will want to order your own regulator that will allow the flow rate to be at least 25lps. You can find them on Amazon, you will also want to get the cluster mask that is designed for lucky people like us who need to get as much O2 into our system as fast as we can. If you can not get your doctor to give you a script you can get your own welding setup. you can find all kinds of information from the search box up top and we will help you out with anything you need. here are the links to the regulators. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
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uux joined the community
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@CHfather we are all blessed to have you. Luis this is just a taste of the support you'll find here.
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So, here's the first line of a long page of pharmaceutical information about Maxalt: "Rizatriptan is used to treat acute migraine headaches in adults and children 6 years of age and older. It is not used to prevent migraine headaches and is not used for cluster headaches." I can't think of an injectable preventive (as you mention) that is typically used for CH, except for the new drug Emgality. Sumatriptan (Imitrex) is an injectable abortive. Verapamil is not likely to have any significant effect after a week (it takes time to get into your system), particularly at that very low dosage. With your relatively short cycle, I would think that a course of corticosteroids (prednisone, usually) would be the best way to handle it for now. In the long run, D3 and oxygen (and perhaps other things, including busting) will be the best preventive and abortive strategies. I would urge you to read this post and the related links in the post so you have a better sense of standard treatments and other options, including busting: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It's a little puzzling to me that your experience seems to have been that energy shots and melatonin have possibly made it worse. A small percentage of people have reported here that one or another of them seemed to make their attacks worse, so it's not impossible at all that they both would have that effect for you. Like I say, it's just a little puzzling to me. Edited to add: Just saw BOF's latest post. The information at the blue banner, about busting, is reproduced verbatim at the post I linked you to, so you can read it there.
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Thanks, other's will be along shortly with links for you. I'm not great with links & it is late. Be sure to read the New User's blue banner, it is packed with info. Read, ask lots of questions. You are not alone.
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Thank you! Ok, sure any help is appreciated. I do not have oxygen or have any idea where to get. I have been on verapamil for about a week now. Before that I was on zonegran and it was working well..until it didn’t. I have not tried d3 regimen but have read things somewhere. If there’s any information about it that yall can provide that would be awesome. That’s the only preventative medication I’ve tried. I have tried melatonin and energy drinks and it only seemed to make my headaches worse. I have episodic headaches. They come roughly at the end of the year. They last for about a month with my first week being an intro and my second week being the worst week of my life. During the second week I get clusters maybe twice or three times a day but they last sometimes the entire day. It just depends. My clusters are at night, and early morning when I wake up. I’ve had clusters Around noon which for this cycle that’s the most common. I see a neurologist here in Houston. Again any help and support will be appreciated.
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Wecome Luis, sorry you need us happy you found us. It helps if you can share a bit more. First (most importantly) do you have oxygen to abort your attacks? How long have you been on Verapamil? Is it immediate release? Have you considered trying the D3 regimen? It helps a lot of people. What other preventatives etc. have you tried? How often do you get attacks? How long do they last? Are they only at night? Have you tried melatonin? Are yours episodic or chronic? Do you see a headache specialist? I know it seems like a lot of questions but your answers will help us help you and in the process help other's.
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Santa has a demand valve!
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Hello my name is Luis. I just got diagnosed with cluster headaches one week ago but have been suffering from clusters since I was about 13 or so. I remember the first one starting when I was like 8, maybe. Anyway, I am kinda depressed due to my headaches. My cycle started nov. 16 and is still going. The second week was horrible. I went to the hospital 3 times in this cycle. One because I had a panic attack due to too much steroids and worrying about my headaches. I still feel really crappy cause I just started a new job and have been absent twice now. I also crashed my car due to the feeling of shadows, luckily my car can be repaired. I just wanted to reach out since I am feeling very alone and depressed. Sometimes I think that I don’t want to deal with this pain every year. I am on verapamil 120 and maxalt. it is semi working but may be thinking about another injectable preventative. I just don’t want to be in pain.
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Luis joined the community
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Thanks all
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@Bass1802 congrats on your 1st oxygen abort! Yay!
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I have to agree with BOF, I was just recently diagnosed CH after 9 yrs without anything that oxygen does work. I’ve been taking the Imitrex 100mg pills for last month almost 4-6 of them within 24hrs. I used the info given here above on CHfather’s post and can say after getting the rig figured out I aborted my 1st earlier today. The Redneck Reservoir was what I ended up getting best results until I can purchase a proper rig. Definitely worth it if your up to the task.
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Blue light of death... Ha ha ha ha ha!
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Okay - I watch LSU games! Must helping them. Go Tigers! I refer to the TV as the Blue Light of Death. Husband does not get it!!
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Just diagnosed clusterhead in need of a oxygen mask
Brain on fire replied to Bass1802's topic in General Board
You'll find a lot of helpful folks here. -
When traveling there is a big difference between medical oxygen & welding oxygen. You can have medical oxygen waiting in your hotel or on a cruise ship.
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I still can’t believe Daniel Radcliffe has Cluster headaches
Brain on fire replied to Dana129's topic in General Board
All the slobbering, the runny nose & eye would keep hair & make-up on their toes too. - Yesterday
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I still can’t believe Daniel Radcliffe has Cluster headaches
Brain on fire replied to Dana129's topic in General Board
Studios go from ice cold to blazing hot as soon as they turn the lights on, filming on location is a whole different ball game. I can see me now (before controlled)... Cut cut cut, cut the lights & bring my oxygen now! -
Jlands, Allergic reactions to CHers are like Kryptonite to Superman. I had a huge allergic reaction to mold spores in June of 2018 that kicked me out of a CH remission that had lasted nearly two years and my 25(OH)D3 was ~140 ng/mL at the time. It took a week of loading vitamin D3 at 50,000 IU/day, extra magnesium and Benadryl (Diphenhydramine HCL) at 25 mg every four hours to stop the CH beast from jumping ugly... I switched to the Bio-Tech D3-50 and did a taper from 50,000 IU/day down to 50,000 IU/week over a two week period. I've been CH pain free ever since. Hope this helps. Take care and please keep us posted. V/R, Batch
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Only in the States, in other Countries they use a Soccer ball, rarely stop, wear little protection & no helmets.
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Thanks for sharing kat! How are you?
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You can use the magnifying glass to search for CBD & see lots of results. It is a helpful tool.
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35 years without oxygen, even with your 2015 to recent remission that is awful, oxygen will change your life!
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Brain freeze is free & worth a shot. Fail for me, but that's just me.
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Thank you for the knowledge Racer1_NC
