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Clusters when falling asleep (Read 2670 times)
venuto
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Clusters when falling asleep
Feb 3rd, 2009 at 6:15pm
 
Hello.  I'm new here.  I am a 52 year old female that has had cluster since I was 19.  I had a two year break, but now they are back again.  After many years of different drugs I've found that the best is oxygen and imitrex when I can't stand the pain any longer.  In this past cluster I have 6-7 hits at night when I fall asleep.  I use the oxygen and it almost always works after 15 minutes.  I fall asleep and within an hour or little more, I awake with another headache.  This goes on all night.  I feel lucky that I have not had too many during the day, usually at night.   I have tried melotonin but find that it doesn't work.  Does anyone have any other ideas?  This sight is a so wonderful.  Thank you.
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Guiseppi
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Re: Clusters when falling asleep
Reply #1 - Feb 3rd, 2009 at 6:22pm
 
Great to hear the 02 and imitrex are working for you. Have you ever tried any preventative medications? A preventative med being one you take daily, while on cycle, to reduce frequency and intensity of your hits. I use lithium, other popular prevents are verapamil and topomax. Definitely something to talk with your doc about. Lithium blocks about 70% of my hits, oxygen deals with most of the rest.

Glad you found us, hoping we can help you out!

Joe
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Ellick
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Re: Clusters when falling asleep
Reply #2 - Feb 3rd, 2009 at 6:31pm
 
O2 doesn't completely abort my hits. It keeps them at bay. I use sumatriptan on early shadows before sleeping. That way I get a few hours sleep which always helps the next day. Psychologically if nothing else.

Have you checked the O2 information to check if you getting the best out of it?

Good luck.

Ellick.
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venuto
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Re: Clusters when falling asleep
Reply #3 - Feb 3rd, 2009 at 6:40pm
 
Hello and thank you for your replies.  After so many years I have tried just about everything except lithium.  I've either gotten bad reactions to the drugs or they just did not work.   I found out about oxygen from reading this sight and I thank God for it.  I'll look into the lithium and again, thank you.
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barry_sword
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Re: Clusters when falling asleep
Reply #4 - Feb 3rd, 2009 at 6:44pm
 
Hi venuto and welcome. You kicked the beasts ass!!!

The after falling asleep hits were the worse for me. It took longer for the o2 to work and the hit was already well underway Smiley What a way to wake up after just falling asleep Tongue

Does your o2 regulator go up to 15 LPM? It aborts the CH quicker at the higher rate for most. Good on the ice packs and sounds like you are armed and ready.

 Barry Smiley
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venuto
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Re: Clusters when falling asleep
Reply #5 - Feb 3rd, 2009 at 6:53pm
 
Hi Barry.  Yes, my regulator goes up to 15 and it does take the headache away most times.  But the headache comes right back when I fall asleep.  I read that these headaches sometimes go away when you get older and that sounded like one of the few benefits to aging.  Ah, well.  Thank you all.  I'll keep reading.
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Jennifer
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Re: Clusters when falling asleep
Reply #6 - Feb 3rd, 2009 at 8:14pm
 
I may be completely off base on this, but could the "comes right back" part be a rebound from the triptan?   I ask that only because I gave up on the them because of the rebounds from hell. Can someone pipe in on this with some additional input?

Definitely look into a good abortive. Verapamil works pretty good to lessen the severity, and Joe and others often extol the virtues of Lithium... well worth looking into if you haven't tried it.

Stay strong Venuto.  You are taking charge of  your ch, and there is strength and POWER in doing so.   Kudos to you, and welcome!
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Re: Clusters when falling asleep
Reply #7 - Feb 3rd, 2009 at 8:17pm
 
I had the exact problem my last cycle.  Hardly any hits during the day.

I had night hits every hour after falling asleep until about 6:30am.  Seems I could get a good two hours sleep then.  Unfortunately work was getting in the way of doing that every day.

You can try messin around with melatonin.  Works for some. Not for me though.

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Re: Clusters when falling asleep
Reply #8 - Feb 3rd, 2009 at 8:53pm
 
If you aren't taking any meds try an energy drink before hitting the O2 on the 2nd attack.  Just down anything with 1000mg of Taurine in it.  That may hold things off and let you get some much needed rest. 

Don't worry about the energy drink keeping you up.  If you are getting that many attacks a night I'm sure you are exhausted.

Good luck...

-Dennis-
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snickers
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Re: Clusters when falling asleep
Reply #9 - Feb 3rd, 2009 at 10:24pm
 
Hola....that happens to me a lot too. I go to sleep and shortly after i'm sucking air. Takes about 15 min, I go back to sleep...back again. It's like the CH is telling you "I WASN"T FRIGGIN FINISHED WITH YOU AN HOUR AGO!!! Angry" Sometimes if I wake up suddenly I get hit. 02 and Imitrex injection (when I'm not near my 02) work best for me.
Im just glad I'm having a break now. I can actually down my vino and not have to worry. Hope I never see CH's again! (yeh)
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Re: Clusters when falling asleep
Reply #10 - Feb 4th, 2009 at 11:10pm
 
I get the night hits as well-

Some people swear by the use of Melatonin- an over the counter herbal medicine.   People have success taking anywhere between 6-12 mg  before falling asleep and have reported skipping the night hits altogether.   You may want to check it out- 

Kelly
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Re: Clusters when falling asleep
Reply #11 - Feb 5th, 2009 at 9:40pm
 
Hi venuto, welcome

I see by your post that the worst time is while you are trying to sleep & it goes on all night.
I am guessing that imitrex is the equilivent to the Aussie Imigran (used for migraines), if this is the case then something that may be worth giving a try is while you are huffing on the o2 & you have killed the initial hit is to take an imitrex & then continue with the huffing.

Below is a cut & paste from the oxygen info tab & is the method I use for o2.

"My preferred method is to count the number of breaths I take to get rid of the hit & then stay on the O2 for the same amount of breaths, I can usually abort a hit with about 80 to 100 breaths but I breathe straight from the bag as I have a beard & can’t get a proper seal with the mask.
The most important thing is to be absolutely sure that you have killed the hit, no "maybe’s" or "nearly", if you don’t ensure its gone before you do the follow up breathing there’s a good chance of getting a rebound hit & that will be even harder to get rid of than the original one."


By taking the Imigran while huffing I can get 6-8 hours PF & is usually enough time to get some rest even if I cant actually go back to sleep; I stumbled across this purely by trial & error, if you take the Imigran before or after the o2 huffing they wont do J.S., why it works this way I really don’t know but it works well for me & a couple of others here.

Cheers
Barry
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Re: Clusters when falling asleep
Reply #12 - Feb 5th, 2009 at 10:37pm
 
an imitrex tablet almost always guaranteed me a full night of sleep
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Re: Clusters when falling asleep
Reply #13 - Feb 6th, 2009 at 8:08am
 
Im the same as snickers although not used my injections yet as 02 has worked without fail!!

PFD To ALL Wink
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Re: Clusters when falling asleep
Reply #14 - Feb 6th, 2009 at 11:23am
 
Your message implies that you delay taking imitrex until it is well developed and the pain has worn you down. If I'm reading correctly, this is part of the problem: Imitrex should be taken at the first sign of an attack; delaying until the attack has been going on for a time makes the Imi. less/not effective.

An old timers trick that may be worth trying: taking an ergomar tab (form of ergotamine) juss before bed. This often prevents an attack during sleep.

However, mixing it with Imitrex is something you need to discuss with your doc.
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Re: Clusters when falling asleep
Reply #15 - Feb 6th, 2009 at 10:29pm
 
That's actually a good point Bob. I had learned the hard way, it definately has to be taken at the onset, the earlier the better.
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venuto
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Re: Clusters when falling asleep
Reply #16 - Feb 9th, 2009 at 5:24pm
 
First, I just want to say thank you all so much.  You are amazing.  All of your responses are so appreciated.  

I do wait to take my imitrex shot.  When I was first prescribed imitrex shots, probably 10 years ago, I thought they were a God send.  I did find that I got myself into deep trouble by using them so frequently.  I went from have headaches 2-3 times a day to nearly round the clock.  Also, my clusters lasted for 3 months.  I seem to have a very low resistance to drugs and have had many bad side effects.  The oxygen does work, but it just doesn't seem to last.  I have read a good deal on this site.   I have been taking melotonin along with the synergy mix that I read about.  I have been getting some sleep in.  Don't know if it's the mix, but I seem to be cutting down on the hits.

Again, a heartfelt thank you.
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Re: Clusters when falling asleep
Reply #17 - Feb 10th, 2009 at 1:56pm
 
I used to do an imitrex tab before bed and that did the trick.  I will occasionally use an imitrex injection f I wake up with a really bad one, but Oxygen is usually the go to abortive for night time hits.  Verapamil as a preventative keeps those at bay though.
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