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Faithd

PLEASE help me, I need ideas!

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Hello all, 

 

I am a 26yo female, 10+ year episodic cluster headache sufferer. With this new cluster starting early in the week I have started getting about 3 clusters a night and I’m struggling so bad! They are worse than they have ever been. I use welding oxygen which I am now critically low on supply till Tuesday when I can get it refilled, I have 2 doses left of Naratriptan (Amerge) and that’s it. I don’t know what to do to treat this, I just got kicked off my parents insurance a couple weeks ago so no coverage. I will try anything to help the pain! The oxygen had been working very well for me but now it seems to work great for the first cluster of the night but does nothing for any after that so I don’t even know why that’s happening. I’m happy to go out and buy anything that might help me get thru this, I’ll call my PCP on Monday to see if he can give me something more, any suggestions? I’m basically at my max for the month on the triptans so it needs to be something else. 

 

Any sugestions you have are are greatly appreciated! I know I’m not alone in this but it sure feels like it, no one I know truly understands what it’s like and how desperate I am for any help. 

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Hi, well I don't have the same clusters as you do, but I do have chronic migraine and narcolepsy with cataplexy. The cataplexy is new, scary. But we do have some things in common lol, I once had a migraine last 3 month's. I would have ate my own hand to make the pain stop. My neurologist said in order to avoid the migraine or in your case headache is obey the rules. Eat regularly, most of the time its set off by low blood sugar, avoid harsh light like florescents avoid using the computer or your phone for long periods of time. Avoid harsh chemicals, cleaners and perfumes, anything that may aggravate your headache. Unfortunately this is something you would have to do regularly. Also avoid caffeine, alcohol and anything else that my irritate your conditions. And for natural remedies it helps to use rosemary and lavender as aroma therapy. I use two drops of each in a roller with liquid coconut oil and rub it on my temples, or you could put a drop of each on a cotten ball and just smell it. It helps. I hope this helps you.

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SORRY!  Some thoughts:

Energy shots (5-Hour Energy) at first sign of attack (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue)   Stay hydrated -- lots and lots of water.  You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help.  Wish I could think of more.

When O2 in tanks gets low, it seems to lose its effectiveness.  Hopefully this problem might be solved (if it is a problem) with your new tank.  At some point, you might be better off inhaling cold air from an air conditioner (or vigorously exercising outside if it's cold where you are).  You want to start the D3 regimen as soon as possible, but it isn't going to help you in the next couple of days.  (See the ClusterBuster Files section for info.) Triptan tablets are next to useless, but of course the other stuff is ridiculously expensive.  You can get three injections from one autoinjector, though, so that makes it a little more tolerable (info about how to do that is also in the ClusterBuster Files section, in the post "Extending Imitrex," which is on the second or third page.  Check the list of triggers (also in the CB Files section) to be sure that not doing anything that makes it worse (MSG, chocolate, aged cheeses, etc.)

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Welcome! Sorry you need to be here though.

Nocturnal hits suck. In my opinion because you don't realize they are there until they jack up a good bit. As a 'nocturnal' myself, I will address that. Grab some caffeine as you head for the O2 and down it fast. Cold seems to work best. I use iced coffee or V8 Energy. The shots make me vomit. O2 will kill a hit, but not prevent the next one coming behind it. If you are getting hit every two hours at night, you will kill the first, fall asleep, get the next one on time. Your O2 will not prevent the next one. Are you hyperventilating on the O2? Do that till the pain recedes. Then stay on for another 5 minutes with a normal breathing rate and the O2 turned down to support that.

Many people think that if they get another hit in an hour or two, the O2 is not working. Well, it is. It is an abortive, not a preventative. So, the next hit is going to come!

Sleep in a recliner partially reclined but with your head above your heart. It helps a lot and you will wake sooner if you get another hit. Pile pillows around until you are comfy and secure.

Start hyperventilating when you first get up. It really helps even with just plain air. And you will use less O2 when you get there.

Eat regular if possible and schedule your sleep. Naps can bring on a hit and having screwy times to go to bed is just aggravating the dragon. Set a time to sleep and a time to get up. Stick to it. Really tough with night time hits, but very helpful.

You do not mention a preventative, are you on one? Verapamil perhaps? That is normally the best one to take and the first one you should try. It is a cheap med to take. With CH, you likely will need a pretty high dose. Likely he will start you with 240 a day and step up from there. Insist on the Short Acting vs the Extended Release- it works much better for us. And you can tailor when you take your pills based on when you get your hits. At three times a day, I took my first one at noon, then dinner, then late at bedtime. Just keep them at least 4 hours apart. Unless you have other health issues that get in the way or have low blood pressure, you will up your dose till you get relief.

If you get hit with no O2 around, then grab some caffeine while running really hot water in the tub. I get in and let it fill with water as hot as I can stand it. Often I have a full normal tub full by the time I get out. I just keep adding more hot as it cools off.

 

ATB and I hope this helps a bit. Hugs!!!

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To reply to Spiny; I also take verapamil and have low blood pressure but I take effortil (Etilefrine) with every dose, keeping my pressure to normal, otherwise I could not take it. 

If you can, use ginger, celery, carrots and cucumber to make a smoothy or drink alot of ginger ale. I use the combo of Red Bull, caffeine shots and ginger if I maxed out the triptans for both chronic cluster and migrains. 

Also thanks @spiny for the tips on the O2 usage. It's very helpful ! 

Good luck faithd, I don't know anyone who understands or has this pain either, I feel your pain. This forum is the only place I can turn to. If you have more questions or feel alone in your struggle, we are here for you.

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