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This has never happened


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So for some reason I can't lay down and try to go to sleep, because if I do I automatically wake up within 30 to 45 minutes and get a attack about 15 minutes after waking.  This has repeated over 12 times since midnight last night.  I don't get 12 attacks in a day that's just insane.  It's happened before, but not more then 3 days in a week like this week.  Anyways, after about 4pm and the 12th attack I couldn't handle another I was wiped out that last one was super intense.  So I've just been walking around and trying to keep busy and moving.  If I sit down or lay down I can feel the shadow start to come for an attack to follow shortly after.  It's been over 24 hours and I still feel like this, I need sleep.  Anyone have any suggestions or has this happened to you?

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Hi Blues!

Well, I can identify with your frustration. Almost all of my hits are nocturnal. For me, they hit 15 minutes after falling asleep and run for 2.25 hours without O2 or an abortive.

If you have a recliner, you can lie back in that to sleep if you keep your head above your heart. Also there is the pile some pillows on a table and sit in a chair with your head pillowed to sleep method. Taking Melatonin at 9mg up to about 20mg at bedtime can buy people some sleep. Trying those should buy you some rest.

For many, a nap will set off a hit. Maintaining a steady sleep schedule is best. I understand being tired after a hit or ten. The idea of maintaining a sleep schedule seems impossible right now.

What abortives do you have? O2? Imitrex? A bit of background can help. Have you tried slamming an energy drink at the first sign of a hit? It can be a big help.

Please let us know what you take for your CH and if you have had a diagnosis and scans done. It will help us help you.

I can tell you for starters that you need O2 and use the proper breathing method to abort those screamers!

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For me attacks during the night are normal as well. One hour after going to sleep I get an attack. It takes me around an our until I go to bed again. One hour later same thing again. I have this all night (and days when I take a nap).

I still doubt if I should go to sleep or stay awake, but its always hard to find the right answer.

Download the app adn keep track of your attacks and other symptoms and maybe it will give you and your specialist more view on how you are doing. I've made the app to keep track of my own attacks and all I do to feel better.

Hopefully I will be able to build a platform so we can share our info and all together we can search for the best treatments, not by experiance but by looking at our data.

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