Besides the obvious, the intense pain, what bothers me the most with these CH's is the correlation of sleep and CH's.  For me, the worst time of the day is night time.  I am long enough into this episode this season that I have now come to fear sleep and will do almost anything to keep from going to sleep because I KNOW what is going to happen as soon as I close my eyes.  During the day, as Ive read with others on this site, the shadows seem to be the worst thing I deal with and compared to the full hits I get at night, these shadows are not that bad to deal with.  On the RARE occasion I do get a full hit in the day time hours, it doesn't seem to be as severe as the ones I get at night.  Ive have probably had 6 hours sleep in the last 48 due to night time hits and just plain not wanting to go to sleep.

So, what do others think this could be?  A lower O2 rate during sleep that is triggering the hits?  Something to do with the electrical stimuli be disrupted during sleep?  Has there been any research findings on sleep and CH hits?  IMHO, there is DIRECT correlation with sleep and this condition we all suffer from in some way.

I yearn for uninterrupted sleep ALMOST as much as I want these hits to stop forever at this point.  Thoughts?

Have you tried melatonin yet? Many can avoid the night time terrors by using melatonin, an OTC sleep aid available at pharmacies, vitamin and health food stores. Start with 9 mg about 30 minutes before you go to bed. It's a personal dosing thing, some have to go as high as 18 mg to get relief. Some split the dose in half, half standard release melatonin, half extended release. The standard will get you to sleep, the extended will get you through the night.

There was a thread awhile back that went into the differences between types of melatonin.

It was generally agreed that the "good stuff" is

n-Acetyl-5-Methoxytryptamine.

As to the trigger aspect, it has something to do with your REM sleep cycles but that's as far as I can recall on the mechanism. One of the more research minded souls will hopefully pipe up on this.

Joe

Im on Paxil and have been for 30 years or more.  It is supposed to be treating me for a deficiency in melatonin and anxiety.  I know if I miss it, I can sure tell (no relation to CH's).

When you are resting and specifically sleeping, your CO2 blood levels increase.  Too much CO2 buildup will cause CH's.  This is why hyperventilating O2 at onset of attack is so helpful aborting attacks, to balance out the blood levels; reducing the CO2 blood levels.

-Gregg in Las Vegas

Guis, did you just buy the pure stuff on the internet, or get it from pills? I've tried a couple supplement companies and only two have really worked for me Natrol and I don't remember the other name.

anyway, Melatonin is the shizz, use it. I started with 5s, didn't work. 10s, didn't work. 15 was the sweet spot for me.

Here is another strange thing that is just grinds my nerves.  I lay down in the bed or on the couch to watch some TV and with 5 mins, I can feel the shadows coming.  Knowing all the while that if I continue to lay there, the pain S L O W L Y increases the entire time.  So, if CO2 increases while in REM, then what in the world is it with just plain laying down??  Its like I cant catch a break at all unless the sun is shining and Im constantly moving about doing something.  I AM going back to the Doctor Tuesday to get my script refilled for Verap!!  I cant take this any longer.  I have gone as far as I can go trying to fight this on my own with no meds.  The last 48 hours have wore me out to the point of breaking.

It didn't work for me........but some have posted that if they sleep in a recliner, instead of laying down, the hits decrease. I cannot begin to explain WHY it works, but it's worked for some. :-/

Joe

Thanks Guiseppi, was actually thinking the same thing.  Going to try it tonight.

Genisis,
Hang in there!  It is tough!  The toughest challenge you probably will ever experience in life.  CH's are a living nightmare anot easy for any of us.  To each his own as for how much one can endure.  Nobody can tell you what you feel.  You are unique and will just have to trial and error what you can.  The beast morphs every cycle.  What worked in the past, may work again, however may not and therefor may require some changes.  Laying down isa trigger for many of us.  Sleep is a trigger for most if not all of us.  Eventually you will physically require sleep, so becoming sleep deprived really may not be the answer.  There are plenty of preventaive treatments that do help most of us and you will learn, hopefully sooner than later, what works for you this cycle.  You are not alone.  We all understand what you are going through.  Hang in there.  You will get through this.  Read as much as you can, ask questions, educate yourself, chances are you will possibly have to educate your neurologist on Tuesday.  One thing is for sure, somebody will be on this site within minutes of you posting to be emotionally supportive. 

-Gregg in Las Vegas

LasVegas wrote on May 26^th, 2013 at 12:50am:

Sleep is a trigger for most if not all of us.

Not for all of us. I've seen a few people post over the years that they rarely get nighttime CHs, just like myself as I've only ever had a handful at the most when sleeping. Which just makes figuring out CH a bit harder.

Like Mike, over the past years my attacks came mainly during
the day with the odd one or two waking me at night. To late
for meds to work, so the normal thing for most of us, crouch
on the bed head in pillow and scream. My last episode was
entirerly different though. Shadows all through the day plus
a couple of kip 5-7 attacks, then hitting me two or three times
during the night. My wife was at her witsend as i refused to
go too hospital, and being over the Christmas period my GP
was unavailable.So one night when i was storming around
the house. My wife got some ice blocks from the freezer
and soaked my whole head and neck with them, and bingo
headache gone in 15 minutes. I continued with this routine
for the rest of my cycle, and not needing to go to my GP
for Med's. I've also read some folk use hot packs on there
head and neck for pain relief, and helps them get some sleep
at night.
Cheers, Hoppy.

As I read through more and more postings it is truly amazing how unique CH is for each of us.
I personally do not have Sleeping attacks.  During my cycle my shadows and general right side pressure/pain are constant even with preventative treatments (Topamax) though they do prevent the screaming beasts.  My eye is droopy and closed more often than not, even between attacks.  At the peak of my my cycles I have about 6 Short but intense HA per day prior to Prednisone kicking in which is my go to option. 
I do not respond to triptans and have only been provided with O2 at medical facilities   As my CH are not extremely long in duration at the moment the jury is still out on O2 effectiveness for me.
I am feeling a bit better the past few days.  Still not must sleep from the steroids.  Hoping the beast remains at bay at the end of this taper .

ClusterMike80 wrote on May 26^th, 2013 at 4:28am:

As I read through more and more postings it is truly amazing how unique CH is for each of us.

There is a lot of variation between different people with CH which really makes me think that there are really several different underlying conditions which result in CH. This can help account for things like daytime / night differences, how some drugs work for some people and not for others, some being resistant to all the drugs, etc.. However doing the research on this will be non-trivial since CH is pretty rare, fairly low profile and has limited funding.

Its all about the money Mike.  If 10% of the population suffered from this, they would be scrambling to find a medication to cure this or a drug to make the pain easier to deal with at the very least so they could make Billions from it.  Since we are in a group of about 0.01%...there no money in the R&D for a cure.

I was just wondering, have you tried Imigran.They have worked
for me, if you take them with a strong cup of coffee or Red Bull
at the first sign of a CH.


Hoppy.

PS, you could replace the Red Bull with a Pepsi, they also have
a good record with CH in some folk.

I had my first nocturnal attack around the age of 24, which was some 13 years after my first attack. I'm 42 now and in the past 7-8 years all my cycles but one was at list 80/20 in favor of night time attacks.

As for the idea that CH "has to do something with sleep". It may be true for some of us, but it certainly isn't true for all.

I believe everyone has different thresholds for different triggers, and they also change over time. Some of us are more sensitive if we don't sleep enough or eat on time. I had these two sensitivities myself for years while being able to consume alcohol with little noticeable effect on my CH.

Today, my sleeping and eating habits are less a trigger and I can't even smell alcohol from a distance while in cycle without feeling an attack coming. 

I think the right approach to understand this, is that a CH'er weakest link in a certain point in time is what serves as the triggering mechanism which drives the hypothalamus into malfunction. This may explain also why people often respond differently to the same prophylactic treatment.

Danallan - can you use oxygen to abort your CHs? This might work more effectively than using narcotic pain killers.

However do work with the appropriate medical professionals on anything like this since only they will be able to determine what can be safely used with your medical history.

Sounds like the same as I go through. Sleep is my trigger. Too much relaxation during the daytime can and usually will cause an attack or at least a bad shadow until I get up and start moving. Sleep deprivation will only make things worse too. It's a horrible thing to fear sleep, but I know exactly how that feels.

There is something out there that will help you with these night time attacks ... it's different for a lot of us ... you just got to find out what works for you.

Good Luck

I4B

I fully relate to this post.  Sleep is it for me.  (at least on this cycle).  Every night this week, strong shadows wake me up at 2 am like clockwork.  By 5 am the pain is too intense and I have to get up and let the beast do its thing.  At which point I start my "dance"  I am exhausted and worn out from this.  Dealing with the pain itself is so tiring.  Then I have to go do construction work all day... same as today... after dealing with intense pain all morning.  I am really worn out.  Hang in there.  At least we know that the cycle will end.

I know that everyone says it is not allergy related... But I can't help but think that while laying down, fluid is building up in my head and is creating the pressure. (during the day I am upright and fluid is draining out my nose and not building up in my head?)  When I get an attack, large amounts of clear fluid pass out of my nose.  It seems that the more the fluid drains the more the pressure decreases.  But this may be all in my head.... no pun intended lol.  That and, it always happens in the spring/early summer for me.  This cylce started about 2 months later than usual.

In my last episode, melatonin before bedtime seemed to help (about three 3-mg pills), but not this time. Also Red Bull not a big help this time. I want to hug and thank the inventor or inventors of Imigran (sumatriptan). I get excrutiating pain until it takes hold, but then there's wonderful relief. Have you all noticed how when you emerge from an attack and are PF that you feel....high?

I call it "euphoric" ! I get that same absolute high when I abort an attack, whether with trex or oxygen. It's like I've never felt better. :D

Joe

Genisis wrote on May 26^th, 2013 at 11:44pm:

Its all about the money Mike.  If 10% of the population suffered from this, they would be scrambling to find a medication to cure this or a drug to make the pain easier to deal with at the very least so they could make Billions from it.  Since we are in a group of about 0.01%...there no money in the R&D for a cure.

If that many suffered from this the drug companies would be scrambling for a treatment, not a cure. There's no money in a cure. One dose and you're done, as opposed to a lifetime of cash rolling in. It's the same with stomach ulcers. A doc came up with the Pepto Bismol and antibiotic cure for some stomach ulcers. Drug companies fought kicking and screaming to hush it up. Some docs still think it's bunkum because of the propaganda, even though people have been given ulcers and been cured over and over. There's almost never an impetus for a cure when a treatment will sustain life, at least for drug companies looking to maximize profits.

I can see why Genisis is afraid to go to sleep. It seems that this episode I get a CH one hour after I fall asleep, whether I fall asleep at 10 pm or midnight. The monster comes calling about an hour later. Last night I was in agony until my little injection of Imitrex told hold. The Imitrex costs $28 per dose so I try to stretch them out to three doses. And yes that seems ridiculously expensive for a tiny amount of liquid! Though, again, I love the person that invented the stuff. A life-saver.

Is it weird this cycle for the last 2 and a 1/2 months I've never been woken up with a headache during the night, but for the last 5 years every cycle 1 or 2 hours after sleep I wake up with a banger

CHsRtheDeviL wrote on Aug 10^th, 2013 at 5:52pm:

Is it weird this cycle for the last 2 and a 1/2 months I've never been woken up with a headache during the night, but for the last 5 years every cycle 1 or 2 hours after sleep I wake up with a banger

That is weird, but not unheard of; enjoy your sleep ;)

-Gregg in Las Vegas

I got through my teens, 20's and 30's without ever having a nocturnal wake up hit. I didn't discover those until my 40's.

Joe

I'd say 90% of my attacks have come during the day. I guess that can be seen as both a blessing and a curse. I get more sleep, but my work gets interrupted.

Mine are completely random. Day, night, cold, hot, asleep, awake, winter, summer - makes no difference. I wish I did have a pattern, at least then I could try to work out what to avoid. That said, the night time hits are always 2am and 4am regardless of what time I go to sleep.