Author |
Topic: night & day reversal?!? (Read 531 times) |
|
cipher_cat
New Board Newbie
miau?
Gender: 
Posts: 24
|
 |
night & day reversal?!?
« on: Apr 6th, 2004, 6:34pm » |
 Quote  Modify
|
hey everyone, i'm just a newbie to all this (November 03) but still learning. so far i've avoided panic, that is until my already terrifying night time beast started taking over the day shift. maybe i just haven't read the thread on this sort of thing yet but is this normal? why are my days suddenly worse than my nights?!? not that the night time thing isn't head-bashing, crying-pain horrible but this is even worse!! at least at night i had the privacy of my own home to suffer in...
what i noticed is that the typical eye watering and nose running signs have been joined by a horrible cough, making it impossible to breath or seek refuge in an o2 mask. i used to have 2-3 really horrible clusters and 2 smaller ones at night. now i have 9 daily + 4 night, each worse than any i've ever had before! anyone else have something like this happen? any strange patterns change mid-cycle?
for a little history, the anti-inflamitories did jack-squat for me, the steroids were a miserable failure and the topamax that i'm on now? i've yet to see anything but tingliness.. i'm presently on Topamax, Verapamil, and o2.
loosing humor... need sleep, stat!!
cipher-cat
|
|
 IP Logged |
|
|
|
joesf
New Board Junior
Gender: 
Posts: 67
|
|
Re: night & day reversal?!?
« Reply #1 on: Apr 6th, 2004, 7:02pm » |
Quote Modify
|
Hey cat,
I notice some sort of "time shifting" for myself too. I was getting hit w/ them between 2 and 3 in the afternoon a couple of days. Then as the cycle progressed they moved to 6 PM for a couple of days and then finally to 8 30 in the evening. These were the first attacks of a day. I could have others after that.
Hope ya feel better cat.
Joe
|
| « Last Edit: Apr 6th, 2004, 7:05pm by joesf » |
IP Logged |
|
|
|
Karla
CH.com Alumnus
New Board Hall of Famer
One of Many and Never Alone - Join OUCH
 
Gender:
Posts: 3090
|
|
Re: night & day reversal?!?
« Reply #2 on: Apr 6th, 2004, 7:04pm » |
Quote Modify
|
Have you tried indomethacin? This is used to treat cph? With the number of times you are getting hit each day it sounds a little high for ch and more like cph. You may want to try this drug if you haven't already. Otherwise good luck with the new meds you are trying now. I get hit 8x a day from 8am to 2am being my last one. I will pray that you find some relief soon.
|
|
IP Logged |
Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
|
|
|
miapet
New Board Hall of Famer
what doesn't kill me makes me stronger
Gender:
Posts: 676
|
|
Re: night & day reversal?!?
« Reply #3 on: Apr 6th, 2004, 9:00pm » |
Quote Modify
|
D's h/a are known for doing the 'time shift' thing . . and sometimes, he shifts his time around, in an effort to mess with the beast . . sometimes it helps . . .
*positive light and energy*
miapet
|
|
IP Logged |
Clusterbusters Rock
www.clusterbusters.com
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: night & day reversal?!?
« Reply #4 on: Apr 7th, 2004, 1:41am » |
Quote Modify
|
They always change up on me. They also always get worse and more frequent before stopping. Hopefully that's a good sign and they dissapear soon. 
|
|
IP Logged |
Chris
|
|
|
cipher_cat
New Board Newbie
miau?
Gender:
Posts: 24
|
|
Re: night & day reversal?!?
« Reply #5 on: Apr 7th, 2004, 9:26am » |
Quote Modify
|
man do i hope you're right about that because i'm loosing my grip! bleh!
as for CPH, i was reading about it on eMedicine and i agree that the frequency sounds more like what i'm going through. it's like clockwork for me, around..
6am, 9:00, 11:00, 2:00, 5:00, 6:00, 9:00, 10:00, 12:00, 3:00am
it's a lot to handle!! but as far as the intensity goes i was under the impression that CPH was less severe and more of an all day throbbing? as far as that goes i'm NOTHING CLOSE. i can tell the start and stop with a second hand and the pain is anything but throbbing when one hits it's more like stabbing, jabbing, searing... although the throbbing aches sort of fill in between those it's not an all day ache sort of thing. =/ i will ask about indomethacin though when my neuro gets back in town.. MONDAY! ahh! until then thanks for the help everyone!
|
|
IP Logged |
|
|
|
UN_SOLVED
New Board Hall of Famer
I need a fully-automatic Imitrex injector !!
Gender:
Posts: 733
|
|
Re: night & day reversal?!?
« Reply #6 on: Apr 17th, 2004, 1:42am » |
Quote Modify
|
Although it does sound like you're having an unusually large amount of attacks, I don't think it sounds like CPH. ( 20 - 30 Severe attacks daily that last only minutes ) . Does that sound like you ?
I've had up to 10 CH attacks in a day, but that is not my norm. Current norm (for me) is 2 - 8 attacks per day. Day or night ...mostly at night but can hit me anytime, anywhere .
Unsolved
|
|
IP Logged |
I'm STILL alive ?
|
|
|
joesf
New Board Junior
Gender:
Posts: 67
|
|
Re: night & day reversal?!?
« Reply #7 on: Apr 17th, 2004, 10:48am » |
Quote Modify
|
Do you think pollen can be triggerng some of your clusters? Now that my cycle has ended I am noticing the effects of pollen which get worse in the country.
|
|
IP Logged |
|
|
|
cipher_cat
New Board Newbie
miau?
Gender:
Posts: 24
|
|
Re: night & day reversal?!?
« Reply #8 on: Apr 22nd, 2004, 1:20pm » |
Quote Modify
|
my norm now is between 9-15 attacks a day on the first and last weeks of the month. they usually last between 15-25 minutes each. i know almost EXACTLY when they'll hit too! within minutes of the hour like clockwork: 4am, 6am, 9am, 11am, 12am, 2pm, 3pm, 4pm, 5,pm, 6pm, 9-1am with sometimes a kicker thrown in every now and again.
the rest of the month i get between 5-9 of them. usually they last about 5-15 minutes. so i'm not sure what i have. i did try indomethacin for a week and a half period initially and i remember it helping a little but it didn't stop the beasts. lets seriously hope it's not CPH in my case. =/
i can't say it's pollen. i was tested for allergies a while back and as rare as it is, i'm pretty good as far as that goes. plus i'm a pretty avid gardener and it really doesn't seem to have much of an impact. i may just get checked out again for peace of minds sake though. thanks for the suggestion!
|
|
IP Logged |
|
|
|
notseinfeld
New Board Hall of Famer
Enough is Enough. Vote Libertarian
Gender:
Posts: 648
|
|
Re: night & day reversal?!?
« Reply #9 on: Apr 22nd, 2004, 1:54pm » |
Quote Modify
|
This may sound a bit Catch-22ish but I'm almost convinced that your lack of REM sleep is piling on the frequency of attacks. Just get some sleep man 
Any time I have gone without sleep I notice a huge increase both in actual attacks and shadowing. I guess my recommendation here is to get a gorilla tranquilizer to knock you out before bed and try to squeak out a 'decent' night's sleep. Even if you're awaken with h/a's it'll be far easier to fall back asleep. If it works at all it should act like a rolling snowball i.e. more sleep-less attacks; less attacks-more sleep-less anxiety....you get the picture.
In closing, I *hate* it for you and suggest you look at clusterbusters.com to get hold of it.
BOL,
nots
|
|
IP Logged |
-----------Democracy is three wolves and a sheep voting on what's for dinner. ---------------------
|
|
|
Tiannia
New Board Hall of Famer
Life does not apologies......
Gender:
Posts: 3241
|
|
Re: night & day reversal?!?
« Reply #10 on: Apr 22nd, 2004, 6:24pm » |
Quote Modify
|
I think I am finally figuring out a cycle within my cycle so to speak.
Mine started in July 2-4 attacks a day. Then I was up to about 7-9 (almost the same time frame as yours but mine alywas ended with a 3am kicker (as you termed it) that was the hardest of all. Then it goes back down and in Oct I got 12 days PF. Then they stared again, but ramped to the 7-9 faster and end of dec I got 4 days PF, same thing again and end of Feb got another 4days off (whoopee!!!) well here it is the end of April, no I di dnot get and days totally PF as I am still getting them at night but my days have been free for 5 days now. If I go totally PF next week it will be just perfect.
I am hoping that you are coming toa break and your cycle will end. Talk to your doc and see what they say. There are some people who have more then one type of HA's so make sure that you talk to him about everything. Dont just discuss the big hits talk about the all day throbbing.
Not that you want to hear you might have more then one, but it is better to know all of your hurdles rather then miss one.
Hope you get relief soon.
-Tia
|
|
IP Logged |
The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
|
|
|
pubgirl
Guest
|
|
Re: night & day reversal?!?
« Reply #11 on: Apr 22nd, 2004, 8:40pm » |
Quote Modify
 Remove
|
cipher-cat
Don't wish it is Ch instead of CPH. CPH is very, very treatable, where Ch can be a real bugger to treat.
The Indomethacin therapeutic trial is well worth doing but the dosage can be a bit tricky to get right. If you had some response, it may be that they didn't push it high enough (see extract below)
Wendy
The usual therapeutic trial of oral indomethacin should be initiated at 25 mg three times daily; if there is no or a partial response after 10 days, the dose should be increased to 50 mg three times daily for at least 10 days; if the index of suspicion is high then the dose should be further increased to 75 mg three times daily for 10 days.
(Goadsby and Matharu)
|
|
IP Logged |
|
|
|
cipher_cat
New Board Newbie
miau?
Gender:
Posts: 24
|
|
Re: night & day reversal?!?
« Reply #12 on: Apr 24th, 2004, 11:52am » |
Quote Modify
|
?sleep? what is this.. sleep?!
i do occasionally get a handle on that rare and precious commodity called "sleep". my neuro put me on this stuff that made me skip 2 clusters and sleep 4-6 hours straight! yeah ME! i'm not kidding. it's called baclofen. *hiss... anyone tried it? i did. wait a minute though before you get excited. like you said that stuff is capable of taking down an elephant. not just any elephant either, i'm talking a pregnant one in labor pains with twins while having it's legs amputated. however, baclofen has a nasty side effect. it gave me the worst neck pains imaginable on the opposite side of my clusters for the entire fisrt day! hmm, all day neck pain one side and clusters 9-15 time on the other? i prefer sleep deprivation to THAT thank you very much! in fact, i prefer having my head smashed in by a two legged elephant. anyway, i'm still in the initial trial stage so keep a look out for a review in the med/treatments section and i'll let everyone know how this baclofen stuff goes, week 1.
Tia-
it's good you're starting to find some sort of pattern to the madness! any PF time is awesome! i'm still waiting for my days break. i'm sure i'll get one here sooner or later. it's good to know they do come! =)
Wendy-
i'm sorry, let me retract or at least rephrase that sentence. you're right, CPH is generally treatable and therefore preferred over CH which is a horror to treat but in my specific case, CPH wouldn't necessarily make it the better case scenario. indomethacin makes my stomach turn, bleed and eat itself. =/ my initial dosage started at 25mg of indomethacin and upped to 50mg three times a day for 10 days. my neuro stopped me there. he wasn't at all convinced it was CPH and the response was less than positive. after trying some other medications i brought it up to him that my daytime clusters may suggest we try higher dosages of indomethacin or an alternative to it. he flat out refused. if i am CPH, i'm either chronic or not responsive to the dosages i've tried and the risk of higher dosages may not be worth it. i may still pressure my neuro to put me back on indomethacin for 75mg. hey, at this point i'm up for anything! i'll happily cough up blood to kill the headaches! who wouldn't? or should i say, who hasn't? =/ it's a good suggestion and it could be next on my list if my neuro will let me get away with it. 
|
| « Last Edit: Apr 24th, 2004, 11:53am by cipher_cat » |
IP Logged |
|
|
|
pubgirl
Guest
|
|
Re: night & day reversal?!?
« Reply #13 on: Apr 24th, 2004, 12:03pm » |
Quote Modify
Remove
|
cipher_cat
Oh shit, poor you.
I know one of the side effects is gastric upset which can be managed with other drugs, but it sounds like a SERIOUSLY bad idea to use it again if it makes your stomach bleed.
Time to think again then.......
Wendy
Amended:
cipher_cat
Sorry, next question
What preventives have you tried?
|
| « Last Edit: Apr 24th, 2004, 12:08pm by pubgirl » |
IP Logged |
|
|
|
cipher_cat
New Board Newbie
miau?
Gender:
Posts: 24
|
|
Re: night & day reversal?!?
« Reply #14 on: Apr 24th, 2004, 2:26pm » |
Quote Modify
|
lets see..
indomethacin, predisone, verapamil, topamax, and...
?baclofen? i just got that one. i really don't know what that's going to do for me yet. it's really questionable.
|
| « Last Edit: Apr 24th, 2004, 3:10pm by cipher_cat » |
IP Logged |
|
|
|
pubgirl
Guest
|
|
Re: night & day reversal?!?
« Reply #15 on: Apr 24th, 2004, 8:05pm » |
Quote Modify
Remove
|
What happened when you tried Verapimil?
W
|
|
IP Logged |
|
|
|
cipher_cat
New Board Newbie
miau?
Gender:
Posts: 24
|
|
Re: night & day reversal?!?
« Reply #16 on: Apr 25th, 2004, 8:35am » |
Quote Modify
|
it went something like this..
nothing, wait, boost dosage, nothing, wait, boost dosage, nothing, wait... um, nothing?
after that we brought it back to 120mg verapamil and slowly mixed in that verapamil with 200mg topamax for a little variety. just recently we're also adding all that to 10mg baclofin. it's a quite interesting, near coma inducing, and double-sided pain combination. although, on it i did happen to pull off 5 hours of sleep last night again, woke up this morning with that infamous topamax tingle hangover, couldn't feel my limbs correctly or stand vertically and my days are still horribly clusterfilled. hey, it's a start. did i mention i SLEPT though?! =p
|
| « Last Edit: Apr 25th, 2004, 8:43am by cipher_cat » |
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss