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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Pain 
        
(Message started by: lars on Sep 28^th, 2004, 11:44am)

Title: Pain
Post by lars on Sep 28^th, 2004, 11:44am

One question. I've been reading people who've suffered with CH for more than 30 years!!!!!

I'm still young (30 years old) and scares me to death to know that in 30 years i'll be the one saying that i'm a "CH for over 30 years" ... yet, for what i understoon, this can disappear and come back hoever it pleases....

but i do have one question for those who are long time sufferers: does the pain level tends to be higher throught the years?

the long-term side effect being suicide answer to one of my post kept me thinking....

Title: Re: Pain
Post by BobG on Sep 28^th, 2004, 1:27pm

I'm one of those that has had clusters for about 30 years. I would say that my very worst cycle was my last one about 4 years ago. It was the longest and the most painful I've ever gone through. Since then I've had cycles of nothing more than shadows (kip 3-5) and a few individual attacks up to about a kip 7-8.

Suicide won't help. You'll just end up in Hell and still have clusters. Clusters you can out-grow, suicide is forever.

Title: Re: Pain
Post by don on Sep 28^th, 2004, 3:00pm

I'm on 27 years.

I haven't found the pain of individual attacks to any more or any less tolerable.

What has become less tolerable as I age is the duration of the cycles and the mental, physical, and emotional toll that they take.

Title: Re: Pain
Post by Tom K on Sep 29^th, 2004, 2:09pm

I've had them since I was 15 (21 years). The first few years were pretty tame compared to now, or so I remember. I know my cycles were shorter and my remission was longer. Now they build quickly and love to hit when they want. I am a spring cycle normally, but this year I was hit in the fall. When I was young and stupid, I wouldn't take a "preventative" to help control them, because I figured that since they only come once a year, why bother. This year, I went to the neuro and said, "Give me the damn preventative!" Guess after a while, you learn.

T

Title: Re: Pain
Post by Mr. Happy on Sep 29^th, 2004, 4:08pm

The years and the intensity ain't half as important as proper management of the malady. Haven't seen my neuro in almost 2 years.......but set the program up with him back then.........called his office today, spoke to his nurse, told her what I needed, and will be picking up a bag-o-goodies when I run to the store later this eve.
Reckon it needs saying one more time...........

Planning is everything,
RJ

Title: Re: Pain
Post by nani on Sep 29^th, 2004, 4:28pm

Quote:

Planning is everything

Yep - He's got that right! [smiley=hug.gif]

Title: Re: Pain
Post by lars on Sep 29^th, 2004, 4:29pm

on 09/29/04 at 16:08:25, Mr. Happy wrote:

didn't quite understand the planning part.... 2 months ago i had enough drugs that were supposed to last me until the end of november on a normal rate but i rant out of it on sunday. i mean, the planning would be in this case counting on possible more attacks as time goes by? i'm not sure if i'm making myself clear....

I'm a bit lost hear. had a kip 7 for the first time on sunday night and not quite sure how to proceed now. I'm expecting a new set in a week with the hope it's a "normal" kip 4. Bearing the 7 was not easy as i'm very debilitated over a blood+ accute kidney infection + stone period. the cycle ended yesterday and lasted one week and one day this time, and today i felt exausthed the whole day, like as if i was beaten up. I'm terrified of having another one like these last 2 cycles. and in a week here comes another one.
but then i see you guys, long time sufferers with stories that creep me out and make me think for one "hope it doesn't hapen" but on the other hand "when's gonna be my turn"....

wat do you mean about planning?

one thing for what i see is certain: even if it disappears it will come back again sometime in my life right?. well now it comes back every month. started to do a calendar because sincerely i think the cycles have been taking more than half a month per month all together. yet the zomig still works and fortunatelly i can bear a 4 as routine and only "crawl to my nest" when it's impossible to act normal wit the running nose and drooling eye thing.

i know... the expectation of the next cycle is part of the devil.....

Title: Re: Pain
Post by nani on Sep 29^th, 2004, 6:15pm

Plan to wrestle with this monster for the rest of your life (hopefully you won't have to), plan on an episode occuring at ANY time, plan on having enough meds all the time, plan on becoming chronic. I don't know about you lars, but I always hope for the best and am prepared for the worst - never surprised and never disappointed. [smiley=hug.gif]

Title: Re: Pain
Post by EvertBoer on Sep 29^th, 2004, 6:56pm

36 years for me. If you are lucky, like I apparently am, you might get longer remission periods between cluster cycles (If you are episodic, like I am). I had five years between my last cluster periods. As far as the intensity, goes, I don't know because I was able to abort every single one during the last cycle. Most of them with just oxygen. However, I have noticed that with a longer remission period, for me the cycle lasted much longer (7 months this time...every night for at least 3 of the months).

Title: Re: Pain
Post by Mr. Happy on Sep 29^th, 2004, 7:22pm

Lars,

I push the "planning" thing because too many CH sufferers fight like hell to make it thru a cycle, then erase CH from their minds as soon as they're out of pain, like it's never going to come back again. Nothing could be further from the truth. It's important to work with your doctor out of cycle - as well as in cycle. The worst thing that can happen is for a cycle to start, you've got no meds, and you have to wait 2 weeks - 2 months to see your doc. Bummer indeed. That's called lack of planning.

You, on the other hand, sound like a strange nut, no offense intended. The way you describe your cycles.....is, well.......Way out of the norm.

Quote:

had a kip 7 for the first time on sunday night and not quite sure how to proceed now

Tie a knot in the end of your rope, and hang on. To be honest, there's a lot of folks around here that carry a K-7 in their back pocket and use it to blow their nose. (No, I don't want to get into a pain pissing contest. I'll lose every time.)

Your cycles don't sound like CH proper, but that's besides the point. You sound like you respond to the same treatments. Go talk to your doc again, and make a long term plan.

You're going to be at this for a while,
RJ

Title: Re: Pain
Post by kekahbah on Sep 29^th, 2004, 7:56pm

I'm a relative newbie compared to some of you, only 14 years here. The intensity of the pain has not lessened over the years, but some cycles are worse than others. I totally agree, planning is important. I spend all year refilling maxalt at every opportunity keeping enough on hand so that when my cycle hits I have enough to last through at least the first three months of my cycle.

Title: Re: Pain
Post by Jonny on Sep 29^th, 2004, 8:02pm

on 09/29/04 at 19:56:49, kekahbah wrote:

I totally agree, planning is important. I spend all year refilling maxalt at every opportunity keeping enough on hand so that when my cycle hits I have enough to last through at least the first three months of my cycle.

Ahh yes, stockpiling is what we call it....grab all the meds that work whenever you can!!!!

.................................jonny

Title: Re: Pain
Post by BlueMeanie on Sep 29^th, 2004, 8:29pm

I hate to say it LARS: Once a Clusterhead ALWAYS a Clusterhead.

Mine started at age 21. It's now been 26 years & still get cycles every year. No difference in pain for me. If it doesn't abort with meds, it's gonna go to the top.

The only difference i've had was the duration of the cycle. Some are as short as 8 weeks. Last year was 18 weeks. You just never know how long a cycle will last. Eventually it can turn Chronic.

As Happy said, STOCKPILE and be prepared for the worse.

Title: Re: Pain
Post by Ruth on Sep 29^th, 2004, 8:42pm

Hi, I have had CH's for 35 years and went 9 and half without, but they are back as you all no that have read my post. When I first started they were 9 months apart and lasted about a month, then they went to 18 months and lasted 6 weeks or so, blah blah. Last time I kept a diary they lasted 8 weeks.
So hang in there, cause they are just there and come and go when they please, and yes I agree, now that I am educated, try to stay prepared and get a good Doctor.
I want to say at this time that I will be looking for a new one and probably a new pharmacy.
My doctor called me on Monday eve. wanted to see me. I went in today not knowing what was up! I was told the Pharmacy called and said they thought I was using too much imitrex! Sense the 13th of Sept, I have had it filled 4 times. I use the shots. Doc says maybe you take a drug free holiday. I said excuse me, but I am doing good with what I am doing. I only had one hit yesterday and two the day before that. Much better than a month ago.
I came home I went to my pharmacy, I wanted to see the mangager, he is out unitl Friday.
I am really upset, I finally found something that works and all I get is grief.
So I say, find a good Doctor and stay on top of it. I am sorry to have unloaded, but I am really sad.

Title: Re: Pain
Post by thebbz on Sep 29^th, 2004, 9:18pm

Mr. Happy,DITTO.Planning is everything and essential if you plan to hold a job. 25 years here. I dont leave the house without the trex. I stockpile all the insurance co will allow and have the doc to help. It is always better when you can anticipate a cluster ,lucky for me I know in the fall or summer around the solstice I have to get the O2 refilled all the meds ready. I might add I get my CHdiet every episode usually spend the time in between getting back in shape and ready for battle. That's what I call planning, and sometimes the bastard demon hits whenever for what reason I dont know.
BTW what happy said STUDY .PLAN. Find a good neuro and GP. Hope that helps and hang in there.
BB

Title: More Pain
Post by Mr. Happy on Sep 30^th, 2004, 12:47am

on 09/29/04 at 20:42:17, Ruth wrote:

I was told the Pharmacy called and said they thought I was using too much imitrex!............I wanted to see the mangager, he is out unitl Friday........

See.......even with the best laid plans, some damned thing crops up unawares.......an yer stuck w/no meds. Besides....what's a pharmacist doing questioning his profit margin. It's so.........un Umerikan.......

Better living thru chemicals,
RJ

Title: Re: Pain
Post by lars on Sep 30^th, 2004, 5:07am

on 09/29/04 at 19:22:39, Mr. Happy wrote:

yes i understood that this sunday believe me. Never again. Fortunatelly where i am now (germany) and being fortunate to have a good insurance, it was easy to get an urgent appointment and buy the medecine...
and back home amazingly the state pays up the zomig ....

[quote author=Mr. Happy
You, on the other hand, sound like a strange nut, no offense intended. The way you describe your cycles.....is, well.......Way out of the norm.[/quote]

erm.. why?
maybe i'm not familiar with terminology as unfortunatelly unlike i can tell from you guys, the docs in my country don't really give that much info or explain things. So if i'm using the official terms uncorrectly please teach me...:(

Took me 8 years to find a doc that could tell me that it was NOT an headache.

for me cycle is from the 1st day when the first "headache" starts till the lthe 1st day that i can say i had no pain at all.... when i was diganosed with CH i was diagnosed as chronic not episodic. my "cycles" (in the terms i use it) happens the whole year and not on a specific time of the year (like spring or autunn or ...). Started to be mostly at night but as the hits kept increasing it happens during the day as well, mostly by the end of the afternoon. a "normal" hit lasts 2 hours to "wear off"

[quote author=Mr. Happy]
Tie a knot in the end of your rope, and hang on. To be honest, there's a lot of folks around here that carry a K-7 in their back pocket and use it to blow their nose. (No, I don't want to get into a pain pissing contest. I'll lose every time.) [/quote]

[quote author=Mr. Happy]
Your cycles don't sound like CH proper, but that's besides the point. [/quote]

why? (i'm here to learn as well)

[quote author=Mr. Happy]You sound like you respond to the same treatments. Go talk to your doc again, and make a long term plan.
You're going to be at this for a while,
RJ[/quote]

last time i went to my doctor (in august) and told him the incrreasing of number of attacks he asked me if the zomig was still responding well. It does. But i'm scheduled to review the treatment in december when i go back again. In the meantime i'm looking for a doctor here in germany.

Title: Re: Pain
Post by Mr. Happy on Sep 30^th, 2004, 12:58pm

Didn't know you were classified as chronic, lars.

Zomig is fine as an abortive, but what are you taking as a preventative? Haven't seen you mention one so far.

Title: Re: Pain
Post by lars on Sep 30^th, 2004, 4:31pm

on 09/30/04 at 12:58:35, Mr. Happy wrote:

Didn't know you were classified as chronic, lars.

Zomig is fine as an abortive, but what are you taking as a preventative? Haven't seen you mention one so far.

thats exactely it....

nowadays i can't take any... Went on Verapamil (i don't know if it's the same name there) for a while but had to sopt taking it as I started taking Inderal and Lorazepam for my first breakdown wich i took for 6 months (plus other mild antidepressives), and since i've been preety much in and out on antidepressives, only take zomig, no preventives.

Since 1997 I took Lorazepan, Diazepan, Clobazan, i think all benzos.. Anafranil, Elavil, valerian root pills and tea....

My body is a mess inside, unfortunatelly i've been a guine pig for antibiothics in a way that 2 years ago i had pneumonia and had to take 3 different antibio (one after the other off course) because the other was not working, and this year with my kidney infect. also had to take different 2 anti.

I'm not comlainning, i know a lot of people out there are REAL SUFFERERS, just explainning a little bit what i've been through medically.

Nowadays the only thing i take is Zomig and Victan (a bezo that i'm taking for stress disorder, one pill every night plus one on s.o.s. anxiety attack; i'm actually not working since june, only doing some small projects as a programmer and trying to study again)

But i do have one stupid doubt: O2 can be used as preventive?