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

flyinfree

CH.com Newbie

Offline

I Love CH.com!

Posts: 18

SOOO UPSET- i can't believe they are back!!!!
Aug 26^th, 2009 at 1:24pm

Haven't had them in years

old oxygen tank up in attic, quit smoking over 3 years ago, in great shape now, on and on i can go.

to wake up this morning at 3:30, and feel that slowl long hard clenching cone on, i swear i could just die.

here we go- a few months of HELL, TORTURE, and TEARS.

that is all

i am sooo upset
Cry

FF

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: SOOO UPSET- i can't believe they are back!!!! Reply #1 - Aug 26^th, 2009 at 1:38pm I have a lovely art piece from an Iowa artist which says: "Many people don't know that there are angels whose job is keep people from becoming too comfortable and missing their lives." When you write back at age 80, with the same message--then, maybe, some surprise!!! <bg>
Back to top	Bob Johnson IP Logged

JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: SOOO UPSET- i can't believe they are back!!!! Reply #2 - Aug 26^th, 2009 at 5:42pm Welcome FF and so sorry CH has you in it's clutches again. Hope you enjoy the gift I pm'd you back PFDAN's to you!
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or An eye for eye only ends up making the whole world blind. M.K. Gandhi If you are going through hell...Just keep going IP Logged

Lawrence CH.com Veteran Offline There WILL be a cure Posts: 163 Merrillville, Indiana Gender:	Re: SOOO UPSET- i can't believe they are back!!!! Reply #3 - Aug 27^th, 2009 at 1:25pm sorry to hear that. we are hear with you tho
Back to top	Weapons Check: O2 grenades--Verapamil hollow points-- Prednisone Sniper Rifle--Rivea corymbosa Nerve Gas IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: SOOO UPSET- i can't believe they are back!!!! Reply #4 - Aug 30^th, 2009 at 12:23pm Yeah.......just when you think they're gone for good.....ambush!!! Wishing you a short cycle. Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

foxxfury666 CH.com Newbie Offline I Love CH.com! Posts: 7	Re: SOOO UPSET- i can't believe they are back!!!! Reply #5 - Aug 30^th, 2009 at 1:13pm sorry to hear it... I just found this site after nine years with this. i finally went to the doctor and got a name for this hell. i think i am going in remission, it's been four days. could be the meds though.
Back to top	IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: SOOO UPSET- i can't believe they are back!!!! Reply #6 - Aug 30^th, 2009 at 1:21pm Welcome Foxx! What kinda meds did they put you on??? Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

foxxfury666

CH.com Newbie

Offline

I Love CH.com!

Posts: 7

Re: SOOO UPSET- i can't believe they are back!!!!
Reply #7 - Aug 30^th, 2009 at 3:57pm

my gp put me on verapamil, prednisone, and metroprolol succinate. he put me on the metroprolol last year, and it got rid of the ch. i stopped taking it when it went away, and forgot about it, as last time it took only four days to get rid of the pain and start remission. about a year went by, and this time the torpol didn't work. so now i'm on a cocktail. I think the prednesone is the main thing that is combatting the cycle, as it tapers off the pain ramps up....but it's been a few days since a full-blown cluster, and i have been sleeping through the night... sort of. i won't go to sleep till 245a.m., because i don't want to wake up in hell, i don't know. this cycle has been the worst one yet... most of my attacks are two hours long, and i've been getting hit so frequently, and so intensly that i have all but destroyed my house, and everything i own. sumatriptan sems to work also, but my insurance will only cover two injections a week. i go to see a nuero tomorrow at 330, i hope to show her some things i've read here, as so far this site has helped me more than the meds. at least now i know i'm not the only one. i literally cried when i found this site... thank you

Back to top

IP Logged

shauna

CH.com Newbie

Offline

I can't do this anymore.............
...

Posts: 2
Cranbrook, BC Canada
Gender: female

Re: SOOO UPSET- i can't believe they are back!!!!
Reply #8 - Sep 25^th, 2009 at 12:54am

Oh boy, do I know that feeling! That feeling of dread when that first ch hits, when you wake up in the middle of the night instantly knowing what that horrific, stabbing, pain is! Knowing that it is going to be the beginning of a long few months! When I have been in remission for a few months I always get my hopes up that they won't come back. My family and I don't talk about the ch when I am in remission, we are scared to, we don't want to jinx my run of good luck! I have had these headaches for 26 years! I have had three major brain surgeries and have tried every drug on the face of the earth (or at least it feels that way)! Right now I am in a cluster and all hope is gone again, my daughter keeps me going but quite honestly I don't know how much longer I can keep going with no sleep and working a full time day job! I am loosing it. My doctors don't know what to do anymore.......
Shauna

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: SOOO UPSET- i can't believe they are back!!!!
Reply #9 - Sep 27^th, 2009 at 9:28pm

Shauna - this beast is pretty good at ripping your life to shreds isn't he? Sad

Good thing your daughter is there to try to help you through this.

Shauna, FlyIn, Foxx, I just hope that that some of the therapies people are reporting success with on this site (the "new" way of administering O2 with high LPM, non-rebreather mask for instance) will help you too. Something has to work!!!! Shocked

Back to top

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

Chad CH.com Hall of Famer Offline Posts: 738 Emmaus, PA Gender:	Re: SOOO UPSET- i can't believe they are back!!!! Reply #10 - Sep 28^th, 2009 at 8:21am Hang in there my friend. Remember to not think about the next hit and enjoy your pain free time. This disease will not kill any of us so get your weapons in order and don't let the beast get you down. Realize we are ALL here to help and support! I wish you pain free days real soon! Chad
Back to top	When the PAIN starts, I FIGHT back! Rivea Corymbosa seeds were my KO punch, now D3 is the front runner! IP Logged

Butterfly43

CH.com Newbie

Offline

I Love CH.com!

Posts: 2

Re: SOOO UPSET- i can't believe they are back!!!!
Reply #11 - Sep 28^th, 2009 at 6:43pm

I find myself in the same boat. I had these headaches for many years and they stopped 5 years ago. I naively thought that meant they were gone for good. I got one about 6 weeks ago and thought it was odd but hoped it was just random. Then a few weeks ago I started getting regular headaches almost daily. 3 days ago the cluster headaches came on and I've had them several times in the last 3 days. I can't believe I'm going through this again! I've got an appointment to go see my doctor in a few days and hopefully get some help. I used to use Imitrex injections as my only relief. I'm hoping this time that I can use oxygen and maybe something else as a long term preventative medication too. They never tried these things with me before. I really thought this was over for me and I can't believe life can be so cruel to tease me for 5 years without them and to now throw me right back into them full force again. Cry

Back to top

IP Logged

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: SOOO UPSET- i can't believe they are back!!!!
Reply #12 - Sep 29^th, 2009 at 12:32am

Butterfly43 wrote on Sep 28^th, 2009 at 6:43pm:

I can't believe life can be so cruel to tease me for 5 years without them and to now throw me right back into them full force again.

Yeah well that's a glass half empty way to look at it I guess.

This could be seen as how lucky you are in a sense to have gone a longggg 5 years since the last episode. That's the way I try to look at my current episode after having been free of the beast for 7.5 years. VERY LUCKY.

OK, to consider anyone experiencing cluster headaches to be lucky is a stretch, but to put it in perspective, I'm just thinking the people who really know how cruel life can be are the chronics who never go 5 days without them, let alone 5 years.

Back to top

« Last Edit: Sep 29^th, 2009 at 12:38am by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

QnHeartMM

CH.com Sponsor

Offline

I AM a Phoenix!

Posts: 1783
San Diego, CA
Gender: female

Re: SOOO UPSET- i can't believe they are back!!!!
Reply #13 - Sep 29^th, 2009 at 9:08am

Butterfly, what part of the world are you in? I do hope you're able to work with your MD to get oxygen. It's helped so many, without delays and side effects. When you go see the doc, take the recent research with you. And order yourself a clustermask - or at least tape up the holes in the one you get with the tank. Good luck.

Back to top

Treat people with kind words.

IP Logged

Dallas Denny 62 CH.com Old Timer Offline Semper Fi !!!! Posts: 295 Island Bayou Mushroom Farm Gender:	Re: SOOO UPSET- i can't believe they are back!!!! Reply #14 - Sep 29^th, 2009 at 10:30am I know the feeling well, started a cycle 3 weeks ago after almost 4 years in remission. But, as a later post says, "think of the chronics that never get 4 days let alone 4 years.
Back to top	I am lost and have gone to find myself....if you should see me before I get back....please ask me to wait until I return!! IP Logged

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