I have only been on this board for a week and i have learned so much from you guys.  this is my second cycle and it is hitting me pretty hard.  it has been going now since the end of january.  twice during this cycle on sunday afternoons i have taken a nap becasue  of the exhaustion from CH.  the first time i took a sunday afternoon nap was on superbowl sunday.  about an hour after i took the nap i got hit by one that was at least a k9 and it lasted for an hour.  i thought i was actually gonna die.  well, being the idiot i am, i took another nap two weeks ago on sunday afternoon and was hit again.  does this always happen after a nap and why.  i didn't know about this board before i took the naps and some have mentioned not to take a nap in their posts.  can anyone give me some insight.  i get physically exhausted after a while and i feel i have to try to sleep because i only get about 2 hours per night.  can someone help me with this?  this board is wonderful for me.  thanks.  

Randall Morton
Boaz, Alabama

Sadly the nap hit is common. One of the more scientific folks will come along with the REM sleep explanation. Like you don't suffer enough trying to get sleep during the week he's gotta rob you of your afternoon nap on the weekends. >:(

Hang in there.

Joe

thank you Joe, i'm trying.  i'm a school principal and it is tough doing that job without sleep.  

i'm a school principal and it is tough doing that job without sleep.

Sheesh!!! Talk about a job requiring patience! ;)

Joe

WITH THE PARENTS TODAY, YOU ARE SO RIGHT!!

A nap is 1 of 2 activities most likely to bring on an attack for me, drinking alcohol being the other.  As many here have said, it is crucial to get a combination of a decent preventive and a good abortive. so we can get some regular rest.


Dennis

thanks Dennis.  i am currently on indocin, topamax and zomig nasal spray.  it's taking its toll on me right now.  my hits usually occur between 2 am and 3:45 am.  i don't go to bed for for of the beast coming and when i finally do i lonly lie there until i finally doze off.  it's horrible.  thank you so much

Yeah, it kinda sucks; when I'm not in headache season one of my favorite things to do when I get home from work is kick my feet up, put on "How It's Made," and take a nap for about an hour, but now that would kick my tail.  Lately, I've been taking melatonin at night before bed so I've been getting plenty of sleep.  If I need a mid-day pick-me-up, I'll take one of those 5-hour-energy shots and it'll do the trick without dragging me down a couple hours later.  But yeah, mid-day nap is definitely a no-no...fell for that this weekend and paid for it.

It truly sucks!  One thing I've noticed over the years, though, is that the nap-induced attack (and the one that always hits exactly 60 minutes after falling asleep at night) really respond quickly to oxygen.

An attack while wide awake will take a minimum of 8 minutes, sometimes as long as 15, to get under control for me.  The nap-or-sleep ones, though, seem to snap away after 4 minutes almost every time.

Was getting too many 9s and 10s this past week, though -- I'm going the Prednisone route for a bit.  So far, so good.

Bless y'all!!!

Goober Dave

A nap during the day will disturb the circadian clock and set up the scenario for a CH attack to occur.

The changes in the neurotransmitter levels and compositions which occur at the REM stage is very similar to what occur during a CH hit. Its extremely complicated and no one really understands all the pathways yet, but in short serotonin falls and melatonin temporarily raises. Day time nap can also cause a drop in the body's natural steroid : cortisol, and an increase in histamine. All of these changes are bad news for a CHer as they tend to set off the vasodilatation process, leading to an impending CH hit.

The concensus is : keep a strict sleep routine at night but avoid day time nap.

Hope that helps.

Painfree wishes to you.

Randall,

Count me among the can't nap folks, pretty common around here, I am currently getting hit about every 2 hours at night. Three to four hits per night takes it's toll, I can sympathize with you.

Good luck and maybe you'll catch a break soon, I know I'm hoping I do.

Baer

i haven't had too many nights with multiple hits so i suppose i'm fortunate in that sense but the ones i do have are k7-k9.  i'm having a terrible time right now and i'm hoping maybe they are peaking.  thanks for your reply nd i'm out on the naps for now.

Just to add another point of view about the naps. In my season, I tend to get CHs 3x a day, once a night around 1am, once in the morning around 6am, and once in the afternoon around 1pm.  I have lupus so I have been taking afternoon naps for 13 years (I've had CHs for 18 years).  I get hits whether or not I am not napping; I have to rest because of the lupus, hence the daily nap.  Unfortunately, the afternoon hit occurs during my high fatigue time.  Fortunately (!), working with my neurologist, we increased the Verapamil (480mg), overrode the insurance company so I could have more than 4 Imitrix abortives per month, ordered O2, and I supplement when necessary with Rock Star.  I also take 10mg of Melatonin at night- haven't been hit in 2 weeks since we implemented this regimen.  

In short, (I tend to be long-winded and I am sorry), I suspect that "regular" napping is probably okay as long as the other strategies are in place.  Weekend napping or the occasional "eye rest" may not be as okay.  The O2 is really great when I get hits and I am awake!!!

Melatonin at night before bedtime will help get you thru the REM sleep at night and get you the rest you need to get you thru the day hit.

Naps are usually out during a cycle. I've seen a few who could do it, but I'm not one of them...

Hugs BD

Dave,

good job on going the prednisone route. I dont take the prednisone orally.  I get the steroid shots at the doc and that buys me days pf, sometimes it has busted my cycle completely.


I've had the "breakdown" nap every cycle also..BAD BAD BAD IDEA!

I can tell it's springtime for the ECH's. Seems a majority of us are having our cycles now.

I busted mine a few days ago. It went out with a whimper [smiley=cry.gif].

I'm a new clusterbuster though so who knows how long i wouldve been in cycle hadn't i been.

PFD to all of you!

-Kim

Kimmie that's awesome the bustin worked for you, congrats! Here's hoping the remission lasts a life time! ;)

Joe

AMEN!!

Emjay wrote on Mar 12^th, 2009 at 9:49pm:

I have lupus so I have been taking afternoon naps for 13 years (I've had CHs for 18 years).  I get hits whether or not I am not napping; I have to rest because of the lupus, hence the daily nap.

hi Emjay - do you take steroids for your lupus? I've been on steroids for 5 years for my behcets and am on 30mg at the moment as been riding out a neuro flare. Despite the 30mg steroids I am in my 3rd week of a CH cycle and thought things were improving before I had a K9 hit this afternoon (previous few days have been 6 or 7 at most).

I know what you mean about the naps - I've been having an afternoon nap for about 10 years, but during this cycle, the naps are setting off a hit, so I am trying to avoid them, I can manage without a nap due to the high steroids, but when I drop them down I wont be able to as I rely on that nap to get me through the rest of the day.

I get hit everytime I take a nap.  Like everyone else here I'm exhausted after waking in the early hours and a little nap would be appreciated but I try not to, and when I give in I pay for it.  However my son has been recently diagnosed with Asperger's and we're waiting for a possible diagnosis of Dispraxia, he wakes every night with nightmares, toilet and just generally wanting to know I'm there.  It's a pain getting him to go back down but he can't help it.  I'm up with him between 2 and 7 or 8 times per night and I'm exhausted.  I know for me a lack of sleep triggers me but I can't catch up with a nap in the daytime either, aaaggghhhh!
x

have any of you tried sleeping in a recliner or used the breathrite strips that open up your nostrils?

I never have Johnny but I've read several people on the board who sleep sitting up or at least raised for their whole cycle.

Joe

Guiseppi wrote on Mar 26^th, 2009 at 12:18am:

I never have Johnny but I've read several people on the board who sleep sitting up or at least raised for their whole cycle. Joe

i used to stack up pillows and my carharts against the wall in my sleeper. i would prop my head against the interior wall and my head would vibrate with the rhythm of the engine idling. i still got woke up every 45 minutes but it seemed more controllable with o2. sometimes it didn't matter what the hell i did.

the combination of the breathrite strips, 4way, and ice cold air would at least give me a fighting chance.

the only purpose idling the truck served was to keep the fuel from gelling.  

hi Emjay - do you take steroids for your lupus? I've been on steroids for 5 years for my behcets and am on 30mg at the moment as been riding out a neuro flare. Despite the 30mg steroids I am in my 3rd week of a CH cycle and thought things were improving before I had a K9 hit this afternoon (previous few days have been 6 or 7 at most).

I know what you mean about the naps - I've been having an afternoon nap for about 10 years, but during this cycle, the naps are setting off a hit, so I am trying to avoid them, I can manage without a nap due to the high steroids, but when I drop them down I wont be able to as I rely on that nap to get me through the rest of the day.

Steambug! I am not on any steroids for the lupus; it is well managed with Plaquenil and Mobic.  Believe it or not, both are anti-inflammatories and the Plaquenil helps with the fatigue!  I can only imagine what my CH pain would be like without these meds since I tend to be between 8-9.5K!  The lupus knocks me out just about every day so it has been really vital that we bust the CH hits.  480mgs of verapamil seems to have done it this time... with imitrix, O2, and RockStar for breakthroughs. However, when I was on a Prednisone taper to increase the Verapamil, I had breakthrough hits at 30mgs so you may want to talk to your doctor about increasing your steroids and getting on a prophylatic like the Verapamil if you can take it with Behcets.... Wow.  My heart goes out to you to have two rare conditions!   getting on a I know that naps can bring on a hit; my hits would come whether or not I napped...