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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> What is sleep?
        
(Message started by: Jill on Aug 27^th, 2005, 12:44pm)

Title: What is sleep?
Post by Jill on Aug 27^th, 2005, 12:44pm

Hey there...

I am having trouble writing this, cant seem to get my head and hands working together... ::)

Sleep - what is that? I dont know anymore. I am wondering if there are any other tricks of the trade for getting some sleep or not being so darn tired... any ideas?

I have been chronic now for a little over three years now - you would think that I would be used to not getting sleep but that doesnt seem to be the case. Especially recently... :-/ I have noticed, as has others, that my mood sucks and I dont have the energy to even deal with just our two puppies.. I lose my temper easily and just cant get going. The pain is one thing to deal with but the not sleeping is a whole nother thing.. you know?

Anyways, the melatonin isnt doing anything for me. I have tried the benedryl and have taken ambien and though they make me tired, I still cant sleep. No matter what I seem to do, those hits at night are viscious.. and each time that I get hit, it seems it is harder to get through as I am so tired....

Right now I am taking some meds for depression and for my thyroid and pain meds.. I dont know what I am going to try next besides the LSA seeds again though they havent done anything yet... :-/

I am rambling and I am sorry for that, like I said, I cant think straight. I appreciate the help and any ideas are great... just one night would be so nice but such a distant dream..

Thanks
Jill

Title: Re: What is sleep?
Post by kcopelin on Aug 27^th, 2005, 1:04pm

what about O2?

Title: Re: What is sleep?
Post by maffumatt on Aug 27^th, 2005, 2:30pm

I know how you feel Jill. Try cat napping, find out how long it takes after you get to sleep that you get hit. For me it is an hour and a half. I set my alarm for 45 min, catch a little sleep, then get up for around 30 min. Then set the alarm for 45 min again and do it again. Works sometimes, sometimes not, but when it does I can at least get enough sleep to function the next day.
Matt

Title: Re: What is sleep?
Post by Jill on Aug 27^th, 2005, 2:36pm

Hey..

I have not had good luck with O2 - it worked real well for about a month or so and then just didnt work so well. The attack would come back after I stopped breathing it, no matter how long I kept it on and now it seems that the cold air makes it worse... I am assuming it is the cold as things like ice or ice cream are a trigger..

I want to try it again, cant hurt but I have to wait until I see my new doctor which I cant see until the beginning of September.. we shall see.

Matt, thanks. I will have to pay closer attention to when I do get hit at night and try to do that. I have such trouble falling asleep for fear of getting it and it seems as soon as I do relax enough, the beast comes knocking. I have found that sometimes I can get a nap during the day but there has to be something going on like the television. It seems that I dont fall asleep all of the way - I am still kinda aware of what is going on.. hard to explain. I can only do this once in awhile though - get what you can get I guess.

Thanks for the help.. caffeine is my best friend right now!

Thanks
Jill

Title: Re: What is sleep?
Post by nani on Aug 27^th, 2005, 2:43pm

Hey Jill, sorry you're having a bad time. :( I know that caffeine helps the CH, but it will interfere with the quality of any sleep you may get, and it will also keep you from falling asleep. Perhaps you should consider cutting it off at least 6 hours before your bedtime?
hugs and pf wishes, nani

Title: Re: What is sleep?
Post by cheNY on Aug 27^th, 2005, 8:11pm

I have a really hard time sleeping as well, I've had luck with taking Zomig right before I go to sleep, by the time it disolves & gets absorbed it will usually abort the first one, which I usually get within the hr. Sometimes I have even slept through the night!!! hope you find something.......

Title: Re: What is sleep?
Post by lionsound on Aug 27^th, 2005, 8:59pm

on 08/27/05 at 14:36:20, Jill wrote:

Hey..
I have found that sometimes I can get a nap during the day but there has to be something going on like the television. It seems that I dont fall asleep all of the way - I am still kinda aware of what is going on.. hard to explain.

this I get. this is how I nap.

I'm so sorry you are not sleeping....it's so hard. CH or not I stink at sleeping.

Have you tried taking some of your meds at night when they might help you snooze?
I have an ocean (sound machine) next to my bed ..kind of like the TV and gives me something else to listen to.
Have you tried relaxation things?.. yoga, mediation, relaxing breathing, visualization..all can be a little hokey, but a lot of fun and if you are not sleping it gives you something to do rather than be anxious about not sleeping. ;;D.

I'd give you med suggestions, but I haven't found those very useful either too much..trazadone, remeron.. or too little....ambien. Melatonin OTC worked better than all of those for me.it didn't for you I read.

Wishing you some PF sleep,
Rori

Title: Re: What is sleep?
Post by Jill on Aug 27^th, 2005, 9:29pm

Thanks for the suggestions, everyone... I appreciate the help!

I have tried everything - well to me it seems like everything - and nothing seems to help too much.. I have to be careful with the relaxation like biofeedback, acupuncture or there was another one.. because everytime they have been a trigger... go figure. I do have a CD with nature music on it that I like to listen to at night, keeps my mind from being too busy if anything.

I have also tried the sleep medications that you mentioneed - they gave me trazadone when I was in the hospital and it worked pretty good.. most of the time. But, when we moved to Texas, my new doctor wouldnt prescribe it.. I have to get a new doctor anyways since this one knows nothing about CH and is too far away, will see if the new one can help with this.. I hate to take more meds but I need sleep! :-/

I think that the problem is not necessarily wanting to sleep but trying to cope with it.. I mean I am used to the idea of not sleeping, been doing this over three years every dang on day. But when it comes to dealing with the headaches, the tiredness and so forth... well I suck at it.. especially when I get too tired.. How do you do it?

I feel bad for my dogs and for Marty - I am so cranky, get mad easily and just cant tolerate much. I hate this for everyone.. you know?

Anyways, thanks for the help..

Jill

Title: Re: What is sleep?
Post by ClusterChuck on Aug 27^th, 2005, 11:08pm

on 08/27/05 at 14:36:20, Jill wrote:

I have not had good luck with O2 - it worked real well for about a month or so and then just didnt work so well.

Make sure you use it properly. I have found that many were not (including ME!). I posted the following in the medication section. Maybe it will help you:

on 08/08/05 at 10:09:11, ClusterChuck wrote:

There seems to be a lot of questions about usage and effectiveness. Here are some ideas that seem to work for me. BTW, I am NOT a doctor nor a respiratory therapist. I am just a clusterhead who has tried various methods, and found some that work, for me.

If you don’t have a non-rebreathing mask
The nose canula CAN work, if used this way: Do not put it in your nose. Put it in your mouth, close your lips around it, and inhale. Open your mouth to exhale, and then close your lips around it to inhale. Breath only through your mouth. Do not inhale any “room air” only the O₂.

If you can’t get a moisturizer
Make your own. Take an empty (and cleaned) mayonnaise jar (or something like that), drill two small holes in the lid, the size of the O₂ air line. Cut your hose, a foot or so from where it hooks to the tank. Stick the hose from the tank into the lid, and far enough down so that it touches the bottom of the jar. Take the hose that goes to the mask, and stick it into the other hole, but just far enough to stick through the lid. Seal around both hoses with a silicon type sealant. Put an inch or two of water into the jar. I attached mine to the tank with a bungee cord. BTW, if you put ice cubes into the water, it will cool the O₂ somewhat. Many feel this helps it to work.

If you are using a non-rebreathing mask
I hold the mask to my face with my right hand. I hold it firmly to my face with the palm of my hand. When I inhale, my index finger goes over and covers the holes on the left side of the mask (the ones with the rubber valve over them), this is to make sure the valve seals fully. I place my thumb over the holes on the right side of the mask (the ones without the valve on them). I use my right hand, so that my thumb covers the holes on the right side. My thumb is larger than my fingers, so it does cover the holes completely. When I exhale, I just lift the finger and thumb (keeping the mask to my face by the palm of my hand), and let the air out of those holes. Some people tape over them. It works better for me, the way I describe it, as you don’t have to lift the mask, when you exhale.

When and how long to use the O₂
Grab the O₂ as SOON as you feel it coming on. Speed is the name of the game. The sooner you get on the O₂, the better the success rate. Stay on it for 15 to 20 minutes. If it has not killed the hit, stop using it. Bear through 10 minutes without the O₂, and then hit it again. If the O₂ does not work the first time, the second time is almost always the charm for me. Something about that 10 minute break seems to do it, for me.
You don’t need to stay on it for the full 20 minutes, if it stops the hit well before that time. BUT, stay on it for 5 minutes AFTER the last of the pain is gone. The first and last place I have pain is just above my cheek bone, at my temple. I press my finger into that spot, and if I still feel some pain, I stay on the O₂.

If O₂ does not or stopped working for you
Try it again. I have gone through periods where it did not work at all. There have been other periods, where it only worked about 20% of the time. Keep trying it. Even if it only works a few of the times, those are hits that you did not have to take imitrex or suffer though a full hit. It has far fewer side effects than any other medication. It is worth it to keep trying.

I hope some of these ideas will help you deal with the beast. O₂ is the only abortive I can use. It has saved my life and sanity. I hope you get good results from it.

Chuck

Title: Re: What is sleep?
Post by Jasmyn on Aug 28^th, 2005, 2:48am

Jill

Quote:

But when it comes to dealing with the headaches, the tiredness and so forth... well I suck at it.. especially when I get too tired.. How do you do it?

this rings so true. I still don't have the answer to that myself. Goodluck, hang tough and just know that you are not alone with this.

Hoping you get a lot of little bits of sleep or a bloody long goodnight's sleep soon! ;)

Title: Re: What is sleep?
Post by Kim Y. on Aug 28^th, 2005, 9:09am

Jill [smiley=hug.gif]

Sorry you are having a ruff time these days.

Do you take Verap.??? I take it at night and sleep relatively well. I have my bad times but usually the BP med I pass out. Course I run low BP so this is the only way I can take it is at night.

Just another suggestion....I know how frustrating it can be to not get relief from much of anything. Don't be afraid to try something again. I did it with Verap. You should try the o2 everytime because sometimes it takes it away and others it might not. :-/

PF wishes to you.............................Kim

Title: Re: What is sleep?
Post by Jill on Aug 28^th, 2005, 2:56pm

It is amazing how exhausted just going out becomes - I went to church this morning and stayed a while afterwards, just got home and am totally wiped.. man I hate this.

Anyways, sorry. I am going to try and see about the oxygen again, like I said, it cant hurt. I was using it the right way, it is just that the air is so cold and that is what seems to be the problem.. but these headaches seem to have a mind of their own so maybe that wont be a problem. Who knows. :-/

I have been on so many meds over the years that I am not sure what else is left.. which is a scary thought since life feels like it is on hold right now, you know? I have tried the verap three times and the pred taper twice but nothing.. I dont get it at all. I am thinking about doing the occipital nerve thing - where they numb it temporarily - but it is hard to find a doc who will do it.

Anyways, thanks for the help. And thanks for letting me vent some - I know that there are things that have been said in the past about me but these headaches are real and are having a huge impact on my daily life, even on just functioning normally. So thanks...

Jill

Title: Re: What is sleep?
Post by brainfreeze on Aug 29^th, 2005, 3:05pm

Girl, do I know where you are at! When I reached this point, I slept upright in a recliner. And woke up in breaks every 30-45 min. I had my REM sleep pinpointed and awoke on first swing of the eyes. And I was a miserable piece of work.
Headache has serotonin involvement just like depression does and I'm wondering at this point if you need to beat the depression or the headache? When I was in my sleep deprived, pain ridden state, I decided to beat the headache since it was HA that put me in this condition in the first place. I figured if I could deal with repeated kip7-10's for over 3 yrs, getting rid of the depression part would be like eating cotton-candy. ;;D

I slowly backed off of all the meds I was taking (because they didn't help) and found an ENT that 'scratched that itch' for me. Once the surgery was over, it was amazing how the depression left and sleep returned.

If you are considering surgery, do it. I'm not familiar with the one you mentioned but the sinus surgery focusing on pulling tissue away from the ( trigeminal or occipital) nerve helped me. I just know it's the nerve closest to the inside corner on your eye, and bridge of your nose. And it stretches over the cheek and to top of the ear. I didn't get the name of it at the time.

Take care - PF vibes to you.