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Luis

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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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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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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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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.

Edited by CHfather

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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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To Louis and CHFather, who mentioned MAXALT, then discussed Rizatriptan. I assume they are one and the same.  My PCP, and NOT my Neurologist prescribed it for me at my request several years ago when I was having really bad days and nights with 4 plus attacks a day, and not always able to access my O2.  I showed him what I had found on Rizatriptan for Migraine, and he agreed to give it to me for that malady.   CHF mentioned that it is NOT used for CH, but it certainly should be.  My DR gave me RX for 7 sublingual tablets.  I think they were 10 mg but they were tiny at less than 3/16 inch diameter.  In the past I had used Zomig nasal sprays and though they did work, they left me with terrible "hangover" for hours, so I decided not to try a whole Rizatriptan tab at first, but to cut one into 4 tiny little pieces.  I dissolved that tiny thing under my tongue, and in 5 to 10 minutes my CH was completely gone, with no hangover.  I continued to use that formula (each tablet - only one at a time - cut into 4 pieces with a razor blade and kept in sealed container, pack of 7 is good for 28 headaches) with total success and NO side effects for the next several years until my headaches just magically ended a while back as I have discussed elsewhere, which by the way I posted on about an hour ago.

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I am not sure if insurance covers oxygen. I have to find out. I’m just in a pain fog most of the day. I hope my cycle ends soon so I can actually prepare for the next. :( 

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