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Watkins9111

New to Cluster Headaches

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My husband found this site for me so I can talk to other sufferers. For me this all started mid july and I didnt know what was going on. Red eye. Stuffy nose and severe pain behind eye. Went to my primary dr and they said sinus infection. After 1 month and 3 different antibiotics they did not go away. It happened everyday right around dinner time, I even tried not eating to see if that helped. I googled daily to come up with diagnosis and all the symptoms matched CH. I saw a ENT first to check sinuses and was given all clear. Found a neurologist and he looked  at a previous brain mri and said all looked normal. He started me on verapamil and oxygen. Oxygen took forever to get approved by insurance but finally got it. Verapamil did not work for me so they gave me shots of emgality and it's been 3 weeks and no relief yet. I will do next injection December 11.  I get 1 to 4 a day now versus 1 when this started. I have nose sprays for emergencies when I'm out running around and also have 5mg tablets. And to add to all of this just turned 52 and in full blown menopause with numerous hot flashes which I think sometimes triggers a headache. I have not read anything about ch in relation to menopause. My indication it's coming is my upper gums start throbbing then ear and into eye. Also is it normal to just feel crappy all over even when not having a headache. I feel trapped on my own home because of this and at my wits end. Glad to know I'm not the only one.

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Bummer that you have to investigate treatment options for this terrible condition.  Sounds like you have someone who knows how to help you with your care.  Please read through the info on the banner click above as it brings a lot of info together.  Did the O2 work for you to abort headaches?  Proper technique , flow rate and equipment are critical for its success as an abortive.  Emgality has a fair amount of success but needs to be given at the higher dose (300 mg) for cluster headaches.  Stick with it for at least three months before passing judgement. Oral triptans are ineffective for treating acute attacks while nasal has some success.  Subq injections are the best  but have a downside of rebounds and may extend a cycle.  The D3 regimen has much promise, is safe if used as directed and has no downside.  Busting as an option is worth considering but requires research and decision making on your part; it is definitely not for everyone.   This site is a great resource and you will find excellent guidance from our members. 

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Yes o2 works but still learning how to do it right. My neuro told me to turn it to 1 for 20 minutes. I have read 7to12 do I've been doing 6. I bought a non rebreather mask from amazon. I also use a ice pack while using oxygen which helps. My oxygen dial goes to 8 do I'm not sure of the different ones. Any help appreciated. What is d3 I have not heard of that treatment. The zomig nadal sprays work quickly but insurance is very stingy with them so I try not to use them unless absolutely necessary 

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For sure, you're doing O2 all wrong (thanks in large part to your astonishingly misinformed doctor).  The idea is that you want to fill your lungs with O2 as quickly as possible , hold it in for a couple of moments, exhale as much as you can, and immediately fill them again, hold, exhale fully, repeat. In order to do that you need a flow rate that fills your the bag on your mask quickly when you start and that makes sure the bag is full as soon as you exhale, ready for you to inhale.   8 lpm won't do that for most people.  So you need a different regulator, which your O2 supplier should provide (just as the O2 supplier should have provided the mask, for heaven's sake).  You can buy your own regulator, but you have to be sure you're getting one that fits your tanks (different size tanks take different types of regulators).  In a different post I think you said your tank was "tall and skinny."  How tall?  I wish I knew how to insert an image here, so I could just ask you what your regulator looks like.  I would have guessed that you didn't actually have a tank, but a concentrator, a machine that makes O2 from room air, but I feel pretty sure you have mentioned a tank.

There's a lot of info that might help you in this post:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   It includes a link to info about the D3 regimen.  I'd urge you to read that post and get back to us.

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