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        Cluster Headache Help and Support >> Cluster Headache Specific >> Fear of Sleep
        
(Message started by: Garys_Girl on Apr 7^th, 2006, 12:15pm)

Title: Fear of Sleep
Post by Garys_Girl on Apr 7^th, 2006, 12:15pm

Found this site earlier this week. Hubby has had Cluster Headaches sporadically for over a decade (didn't know they were clusters until we found this site. "Linking" the episodes, he now remembers having these as far back as when he was 17, when he thinks they began).

HOWEVER/ANWAY.... this is the first time he's had obvious, regular clustered attacks. It's been going on since early March. Episodes minimum of 3/day: one in afternoon, one in evening, and one in mid-am. Average of K9. He's always had trouble with sleep: didn't need much more than 4 hours/night when he was younger; has trouble with insomnia now that he's middle-aged. (He also has sleep apnea).

He started Kudzu Root (and melatonin) three days ago, and it appears (knock wood) to SERIOUSLY be helping - to cut down the frequency of attacks, the length of attacks, and most importantly, the pain level of the attacks.

The highest level of pain he's had during an episode this past 2 1/2 days is a K6 (actually, I just checked the chart again. He's been ranking them from 0 - 10. He called it a "6", but in the "K" scale, I guess it should be a K7, sorry). Anyway, he woke up into it during a nap late yesterday afternoon.

He is developing a HUGE anxiety about falling asleep now, and became so anxious about it he didn't sleep at all last night.

...And that is on the heels of Wednesday night, where he got four straight hours of sleep for the first time in a long, long time (CH or no) - and did NOT wake up into an episode.

How do you deal with the anxiety about falling asleep?

Title: Re: Fear of Sleep
Post by TxBasslady on Apr 7^th, 2006, 12:37pm

This is a normal reaction.

I have stayed awake literally for 3 days without sleeping because I was afraid. When I did go to sleep, the beast bout kicked the hell outta me.

So...I slept sitting up...I propped pillows on the sofa, and slept there for more than a year. A recliner works very well also. There was just something about lying flat in a bed that scared the hell outta me.

Now I do sleep in the bed....but I have added about 3 pillows to my arsenal. You know....you do what you gotta do...in order to cope.

Lots of vibes....and best wishes for some more painfree time.

Jean

Title: Re: Fear of Sleep
Post by marlinsfan on Apr 7^th, 2006, 12:42pm

I learned by taking my cycles one headache at a time. I KNOW I'll get hit when I sleep, but I also KNOW that not sleeping is not an option if I want to keep my job. While in cycle, I KNOW I have to dance with the f..n beast every day and night.

So, I go to sleep ready for battle. I take my melatonin, and leave the O2 tank in the other room ready to go. I get hit, sneak out of the room (don't want to wake my wife) suck on O2 for 10 minutes, go back to sleep, then do it again, night after night.

Sadly, you just get used to it.

When the melatonin is really working and my first hit comes at 4 or 5 am, I simply stay awake. It's a great time to pay bills, do chores, clean the pool, wash the car, etc.

Get Gary over here, will you? It'll be good for him to meet us.

Title: Re: Fear of Sleep
Post by Richr8 on Apr 7^th, 2006, 12:59pm

I experience the same fear and use the recliner approach as well. Based largely on advice from here, in my next cycle I am going to push past the fear and just try to get as much sleep as possible and take the hits as they come. They seem to come regardless, so sleep has to be the priority since sleep deprivation is probably the top side effect of my bouts leading to additional physical and psychological side effects.

Title: Re: Fear of Sleep
Post by Garys_Girl on Apr 7^th, 2006, 1:57pm

Marlin's Fan - he's a lurker. Doubt he'll register or post (though you never know), but I've started recording his experiences with Kudzu and Melatonin (for now) here. :)

Laurie

P.S. He was reclining while napping when he woke up into the episode. Oh well.

I guess when he's sleep deprived enough he'll get over the fear....

Title: Re: Fear of Sleep
Post by burnt-toast on Apr 7^th, 2006, 8:31pm

Fear of sleep & even fear of rest has been a real problem.
This is one issue I've never found a really good way to deal with - 9mg Melatonin 30 - 45 min. before bed really helped me become drowsy and doze off but it's a one shot deal - when I would get hit falling asleep again (regardless of the Melatonin). was difficult.

Tom

Title: The Litany Against Fear. (Bene Gesserit)
Post by Mr. Happy on Apr 7^th, 2006, 10:00pm

I will not fear
Fear is the mindkiller,
Fear is the little death
That brings total Oblivion
I will permit my fear to pass
Over me and through me
And where it has gone
I will turn the inner eye
Nothing will be there
Only I will remain.

Sometimes, SciFi has the answer to all kinds of cool stuff.
Sleep tight.
RJ

Title: Re: Fear of Sleep
Post by sandie99 on Apr 8^th, 2006, 5:27am

When I'm scared to go to sleep, I stay up. I know I can't stay up the whole night, but at least few hours later... even if the beast didn't appear, I'll pay in the morning: I'm tired.

Usually I dread evenings more than night. My beast likes to hit me then.

Sanna

Title: Re: Fear of Sleep
Post by thenucman on Apr 8^th, 2006, 7:04pm

I really understand the dread and fear of going to sleep. The beast has trained me well to sleep lightly and listen to my symtoms. I hit the O2 ASAP, as do many here.

Title: Re: Fear of Sleep
Post by Jasmyn on Apr 10^th, 2006, 4:59am

Like Jean said it is a normal reaction, I think we've all been there.

I still battle to sleep as I'm also a born insomniac.

Quote:

Posted by: Richr8 Posted on: Apr 7th, 2006, 8:02pm
I They seem to come regardless, so sleep has to be the priority since sleep deprivation is probably the top side effect of my bouts leading to additional physical and psychological side effects.

I totally agree with what Rich said here, it is a vicious circle but hang in there with the knowledge that he is not alone.

The problem with the hits during sleep are, that when you wake up from them, the pain is already so intense that it is more of a nightmare to stop them.

Wishing your hubby some PF time.

Title: Re: Fear of Sleep
Post by Kevin_M on Apr 10^th, 2006, 7:27am

Sleep is fertile ground for hits to arise. You mention kudzu and melatonin but as some have mentioned here, adding a further weapon to fight, an abortive like oxygen.
Being awoken in the night can be a given without preventatives or an effective amount of them but with an abortive handy to use it is not hard afterwards to fall right back to sleep.
Pain and lack of sleep was one reason I pursued a preventative more, once an effective abortive was on hand.

on 04/07/06 at 12:15:57, Garys_Girl wrote:

He started Kudzu Root (and melatonin) three days ago, and it appears (knock wood) to SERIOUSLY be helping - to cut down the frequency of attacks, the length of attacks, and most importantly, the pain level of the attacks.

This is a portion of what an effective preventative can do but keep working on it. Glad that what he's been using above has been helping. An additional abortive like oxygen would further assist, which has been pretty essential to manage better. Just knowing the breakthroughs can be cut short and arrested before reaching a higher level of pain helps too, as previously mentioned.

Title: Re: Fear of Sleep
Post by BarbaraD on Apr 10^th, 2006, 8:04am

You didn't say how much melatonin he's taking. I take 12mg at night (it takes a couple of weeks to get in your system - or it did mine to start working well), and it helps me get the sleep I need at night. When I wake in the morning with a shadow - I get up immediately and get some coffee down (don't wait - get some caffine at the first twinge). O2 is great with the coffee to help stop the attack before it reves up.

Red Bull is good - it has a punch to it.

Don't lay flat in bed - this just encourages the beast. Use pillows to almost sit up or sleep in a recliner.

Hugs BD

Title: Re: Fear of Sleep
Post by kcopelin on Apr 10^th, 2006, 11:17am

I agree with the above...before I found my nighttime cocktail of melatonin, benadryl and elavil-I would only sleep one hour a night-the night hits are the worst-I would get hit within 45 minutes of going to sleep-be up with the beast for an hour or more-dose off exhausted on my recliner then get hit again within 45 minutes. We are all different concerning what works-melatonin plus benadryl works well for me-the evail is something my Dr wanted to throw in because of its effect on serotonin levels. I only take 10 mg of that at night-and I never take any of the above during the day...also I never relax-I mean never-if I sit for too long I get hit-haven't been able to watch an entire movie, sit through a long meeting or do any lengthy reading or crocheting for a year now. I do believe alot of us have the "no nap, sllep in recliner" thing going on.
PFDAN y'all
kathy

Title: Re: Fear of Sleep
Post by NotH20 on Apr 10^th, 2006, 12:32pm

As with everyone else here - the fear of sleep is awful.....but for the first time this past weekend I actually got a nap in ;;D

I fell asleep sitting upright on the couch - and it was about a 2 hour nap! YIKES....I just knew when I started waking up what I was in store for. But I never got hit until many, many hours later. I was pretty darn excited.

We all need our sleep and since the beast messes with us during the night, we need to take our rest while we can. Don't allow the beast to make you afraid any more than we already are - we don't want him to win! >:(

Mia

Title: Re: Fear of Sleep
Post by thomas on Apr 10^th, 2006, 2:48pm

Before I started using melatonin, I used to literally shudder when I looked at my pillow. This cycle, the melatonin hasn't helped much, last night was the first night I can remember that I got more than 2 hours of uninterupted sleep. But you just keep on dealing. Yeah, it fucking sucks and yes it hurts like a m*th*rf**k*r, but sometimes all you can do is hold on and ride the bitch out.

Title: Re: The Litany Against Fear. (Bene Gesserit)
Post by Garys_Girl on Apr 10^th, 2006, 2:57pm

on 04/07/06 at 22:00:19, Mr. Happy wrote:

Always was a Frank Herbert fan.

What a viscious damn beast! My heart really goes out to all of you.

Thankfully, although we don't have the greatest equipment (yet), we do have 02, and it (often) really helps.

Gary's taking 10mg of Melatonin now. Last night was... Day 5?

He's so exhausted he's been falling asleep pretty regularly after 1:00am. He does wake up at 5:00am with shadows, but this sleep comes without a visit from the beast! We're not going to complain about 3 - 4 hours of sleep a night, it's much better than he was doing.

The biggest problem is that he seems to need much more sleep than he used to - battling the beast seems to really take it out of you.

...and waking up and falling back to sleep has always been an elusive thing for Gary.

Thanks for the tips.

Title: Re: The Litany Against Fear. (Bene Gesserit)
Post by marlinsfan on Apr 10^th, 2006, 3:00pm

on 04/10/06 at 14:57:48, Garys_Girl wrote:

The biggest problem is that he seems to need much more sleep than he used to - battling the beast seems to really take it out of you.

Yep, battling the beast is hard work, and does leave one exhausted. Some of his greater need for sleep may be the melatonin itself. It's pretty powerful stuff, and leaves many with a good hangover the morning after.

Title: Re: Fear of Sleep
Post by thomas on Apr 10^th, 2006, 4:17pm

What time is he taking the melatonin?

Title: Re: Fear of Sleep
Post by Garys_Girl on Apr 10^th, 2006, 8:24pm

He takes 10mg of Melatonin at 10:15pm. He slept from 1:30am to 5:30pm last night.

He feels no difference in "grogginess" with or without Melatonin. In fact, despite the day I started this thread, he's actually been getting more sleep than he had been.

We did add 1200mg of calcium that he takes with the Melatonin. And he takes 500mg of magnesium in the morning.

He was always an insomniac before - and getting four straight hours of sleep, CH or no CH, is unusual for him, so right now we're pretty happy.

Laurie

Title: Re: Fear of Sleep
Post by Roxy on Apr 10^th, 2006, 10:54pm

Glad he is getting a little rest in there.

I'm one of those that melatonin does not work for. It lights my head up like a firecracker. I have missed a few night hits with Nyquil and sometimes Dramamine, but those will usually only work for one or two nights.

I have learned over the years to look forward to going to bed.....I'm going to get hit whether I sleep or stay up, so I grab the sleep when I can.

One really weird thing is that once or twice a week, I will be dreaming, and I dream that I am getting hit....only to wake up being hit. It's really bizarre.

Sleeping upright doesn't seem to make a difference with my head either. The damn things are going to hit me come hell or high water.

Roxy

Title: Re: Fear of Sleep
Post by thomas on Apr 11^th, 2006, 9:29am

on 04/10/06 at 22:54:00, Roxy wrote:

I'm one of those that melatonin does not work for.

Sigh......... I might be joining that club now, myself. >:(

Title: Re: Fear of Sleep
Post by Kevin_M on Apr 11^th, 2006, 11:14am

Good post Roxy ;)

I agree with all of that, it's been the same here too, including the dreams. :)

Title: Re: Fear of Sleep
Post by imnotbub on Apr 11^th, 2006, 1:28pm

Tell him fear is counter productive. (Easy to say) Sleep sitting up as much as he can and roll with the punches. (Again, easy to say) I feared sleep as much as the next guy until I realized the teabagger is going to come whether I fear it or not. I have said it before, a little sleep is better than no sleep, as I see from your latest posts your husband will agree. Stay in charge, don't give in to fear, and get him to post. Always room for a new family member.

Steve