Click this link to read a post I like on the clusterheadaches.com message board...

Bob Greenwood CH.com Veteran Offline I Love CH.com! Posts: 116 Mass. Gender:	It wont go away Jul 2^nd, 2009 at 6:22am I was up ALL night AGAIN with this beast. 7 CH's last night. It was going away after a half hour or so, BUT the last 2 were different. I had a CH and it dropped down from a 9 to a 3 and never went away. About an hour later the CH came back and was a 10. It has dropped back down to a 3 but it just wont go away. Anybody else have CH's act like this?
Back to top	IP Logged

Click Here to visit the CH.com Facebook page!

Marc

Ex Member

Gender:

Re: It wont go away
Reply #1 - Jul 2^nd, 2009 at 9:36am

Yes.

As you know, I use high flow O2 to abort, and save the Triptans for the occasions you just described - which is very rare if I really blast it with O2 first.

I may be different, but for me: High flow O2 started working better over time. At first, the hits would come right back in 15-45 minutes.
After about a week of ALWAYS hitting the O2 at 45-50 lpm, they spread out further and further. After a couple of weeks, I had several hours of relief.

Again, there are still times when I'll use a Zomig Nasal spray because the O2 doesn't quite do it. This is down to once every two to three weeks.

Marc

Back to top

IP Logged

Bob Johnson

CH.com Alumnus

Offline

"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: It wont go away
Reply #2 - Jul 2^nd, 2009 at 9:46am

Most especially with newly emerging CH the character of our experience can change and be unstable for months, even years. Usually, a pattern emerges which is stable but....

Our collective experience also reveals that meds may stop being effective after long periods of benefit. WHY????? But it does mean that we need to be flexible in searching for something new.

Not even the most effective abortive (Imitrex at about 90%) is not 100% and we need to be prepared to use a secondary level abortive or search about. Marc is reporting a not unusual experience.

Bottom line: with CH, patience and flexibility are survival strategies!

Back to top

Bob Johnson

IP Logged

ellenjoanne

CH.com Junior

Offline

Posts: 77
Greenfield, WI
Gender: female

Re: It wont go away
Reply #3 - Jul 4^th, 2009 at 12:03am

Yep, CH can sure be unpredicatable. Besides happening episodically at times you've never had it (March of this year for me - in my 9 years of having CH, I've never had it in March), even meds that always worked for you in the past, may occasionally let you down. I had this happen to me on Xmas Eve 2007 when I woke up an hour after going to bed from CH, and in spite of taking my abortives for it (Migranol nasal spray) a.s.a.p., the CH just KEPT RIGHT ON GOING ON, to the point where I spent 2 hours, pacing, screaming, crying, and trying to blow my nose, from a kip 10. It was just like the good old days (pre-2005, when I was formally diagnosed, and started treatment of my CH), of taking Ibuprofen, and and Excedrin Migraine like candy, with no real relief from doing so.

The funny thing is, my abortives usually work very well at stopping CH attacks. But, there have been a few times over the years, where nothing works to stop Ch when it occurs.

Back to top

IP Logged

Bob Greenwood CH.com Veteran Offline I Love CH.com! Posts: 116 Mass. Gender:	Re: It wont go away Reply #4 - Jul 4^th, 2009 at 7:31am Your right about them being unpredictable. I used to get them at all times of the day. Now I get them only at night. Usually they last an hour or two, but last night they only lasted 15 to 20 minutes each. But I had 6.
Back to top	IP Logged

McGee

CH.com Veteran

Offline

I Love CH.com!

Posts: 220
Gender: male

Re: It wont go away
Reply #5 - Jul 4^th, 2009 at 10:29am

ive been having hits for around 3 years now so still a new guy and ive mostly have them during the summer months averaging around k7 however this year it started in march and kicked 7 kinds of crap out of my head. never had a day hit before this year now the little git visits me in work, wich is fun Embarrassed

, i work on the theory now that just when i think it cant get any worse thats when it does and when i think ive got myself sorted out and can deal with it thats when he changes its tactics and kicks my arse again. ive gone to bed feeling like crap and shadows running riot and didn´t get hit, sleept the whole night then ive gone to bed feeling fine and been visited 3 times at k8 so now i dont think about it. he visits or he doesnt i cant stop him coming i can only close the door in his face Grin

mark (loves winter, christmas, snow and -20 degrees)

Back to top

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

IP Logged

Sophia

CH.com Veteran

Offline

I Love CH.com!

Posts: 139

Re: It wont go away
Reply #6 - Jul 6^th, 2009 at 4:28am

Yeah neither will mine. However I just try to follow the advice of many people here and live life around hits, or is it in spite of them. Dunno having a migraine and feel a ch coming on. I have noticed heat and humidity make mine worse. I usually can sleep thru the low level hits at night but when a kip 7 or above arrives just get up and go with the flow. I have tried to stop fighting them by beating things up and screaming. It seems to help some. It is so hard to retain control and try to just go with the pain and not fight it that I know for me it will take lots and lots of practice. It is normal to fight that kind of pain. I have spoken with many people from many backgrounds. (I live in Denmark as an immigrant and go to language school with other immigrants so have had the opprotunity to learn many schools of thought regarding pain and its management... I am so lucky!) I have learned that -in my limited experience- the happiest people and the ones that cope with stress the best are the ones that can relax and just go with it. I am currently lucky enough to have a Chinese lady who is my best friend teach me more about meditation and relaxation techniques. I have 4 different types of headaches and this seems to help me since the headaches seem to feed off each other. I am also on a low level of pain management for the other 3 headache problems. I hope my experience helps you. Please do not lose hope. There are so many options and ways of coping that I have no doubt you will find one that works for you. Just please do not lose hope. Life without hope is not worth living. And when it gets to that point please talk to someone and get more options. Big gentle hugs, Sophia

Back to top

IP Logged

Bob Greenwood CH.com Veteran Offline I Love CH.com! Posts: 116 Mass. Gender:	Re: It wont go away Reply #7 - Jul 6^th, 2009 at 11:17am Thanks Sophia. I can't wait for this cycle to end. Last night wasn't too bad. I had 3 that only hit 4 and only lasted 20 minutes, but then I had a 10 wake me up at 5:30 and I'm still getting the shadows almost 6 hours later.
Back to top	IP Logged

BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: It wont go away Reply #8 - Jul 6^th, 2009 at 7:26pm Bob! ARe you using the O2 properly? I know it started in Vegas, but it has changed over the years (Texas did that!). Now let me know if you're doing it properly! I don't like you having 10s... And besides - I thought you'd OUTGROWN those darn things.... Hugs BD
Back to top	What don't kill ya, Makes ya stronger! IP Logged

Click Here to visit the CH.com Facebook page!

Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: It wont go away Reply #9 - Jul 6^th, 2009 at 7:33pm Different BobG, barb.
Back to top	Hurt people.....hurt people. Think about it. IP Logged

Marc Ex Member Gender:	Re: It wont go away Reply #10 - Jul 6^th, 2009 at 8:10pm Linda_Howell wrote on Jul 6^th, 2009 at 7:33pm: Different BobG, barb. Yep, BobG vs. Bob G. Barb, I moved from California to Texas last summer and mine got worse - until I learned about VERY high flow O2. (Couldn't resist the plug ) Marc
Back to top	IP Logged

Bob Greenwood CH.com Veteran Offline I Love CH.com! Posts: 116 Mass. Gender:	Re: It wont go away Reply #11 - Jul 7^th, 2009 at 7:41am Barb, I didn't realize there was another Bob G. I'll change mine I get my mask this week so I can use the O2 the way I'm supposed to. I CAN'T WAIT. I don't like dealing with the 10's either
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!