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        Cluster Headache Help and Support >> Cluster Headache Specific >> chronic?
        
(Message started by: Jobette on Oct 28^th, 2006, 7:25am)

Title: chronic?
Post by Jobette on Oct 28^th, 2006, 7:25am

How will you know if you evolve into a Chronic Clusterbeing. I am episodic, and I think that I have slipped from one cycle into another with only about a 3 - 4 day remission if you can call it that. The pain also switched sides. :-/ I have been looking for some reading material to this affect but am having no luck. I am finding that I can't afford to wait for someone to tell me that this or that is what it is, because I seem to be suffering right about now, more than usual and all my tricks are not working. ::)

Title: Re: chronic?
Post by alchemy on Oct 28^th, 2006, 7:29am

chronic is a year with only a 3 week break during that year. some people do have tey're clusters switch sides. what are you on for meds?
jim

Title: Re: chronic?
Post by chewy on Oct 28^th, 2006, 9:20am

Chronic is 1 year of unremitting pain with less than 30 days remission with or without medications.

Title: Re: chronic?
Post by AussieBrian on Oct 28^th, 2006, 9:43am

G'day, Jobette, and I know just how you feel. I recently had three, perhaps four, individual cycles back to back and all up it lasted 18 months with three days off.

It never switched sides (I hate that) but I certainly got what I call the 'wildcats' in between.

Best I can suggest is that you simply get on with life as best you can and take every day as it comes. No point worrying about what's not there.

Wish I could help more.

Title: Re: chronic?
Post by E-Double on Oct 28^th, 2006, 9:45am

on 10/28/06 at 09:43:52, AussieBrian wrote:

Best I can suggest is that you simply get on with life as best you can and take every day as it comes. No point worrying about what's not there.

Perfect!

Title: Re: chronic?
Post by SophiaK on Oct 28^th, 2006, 12:44pm

OK, since I am in the 10th month of daily pain, no time off in 10 months, does that mean if I have 11 months of daily pain, does that make me chronic? Sorry, Eric I couldn't help myself. Sound logical? ;;D

Title: Re: chronic?
Post by chewy on Oct 28^th, 2006, 5:22pm

Quote:

does that mean if I have 11 months of daily pain, does that make me chronic?

By definition...................No.

Depends on what happens in that 12th month.

Way I interpret it, in your situation, is 1 day of pain into that 12th month and you are chronic.

Title: Re: chronic?
Post by BarbaraD on Oct 28^th, 2006, 5:49pm

Trust me - you'll KNOW when you're chronic. Been there since 97. At first I just thought I was having a long cycle, but it never ended. Now I deal with it and do what I want in between hits. Hell, I'm old, I don't do much anyhow. :D

Hugs BD

Title: Re: chronic?
Post by Jobette on Oct 29^th, 2006, 12:36am

I am on 240 mg verapimil x 2, imitex nasal, pills, and injections, red bull when needed or available, and oxygen and plenty of coffee and cigarettes. I am tyring to do the right things and take all my meds and deal with this thing but it is getting rough. The pain on the left side is A WHOLE lot worse that it is on the right, if you can believe that. Oh well, there is always tomorrow.

Title: Re: chronic?
Post by E-Double on Oct 29^th, 2006, 8:58am

on 10/29/06 at 00:36:07, Jobette wrote:

I am on 240 mg verapimil x 2, imitex nasal, pills, and injections, red bull when needed or available, and oxygen and plenty of coffee and cigarettes. I am tyring to do the right things and take all my meds and deal with this thing but it is getting rough. The pain on the left side is A WHOLE lot worse that it is on the right, if you can believe that. Oh well, there is always tomorrow.

Eventhough the same medication, be very careful when interchanging.
Dosages are different and can lead to complications.

Title: Re: chronic?
Post by Charlotte on Oct 29^th, 2006, 11:15am

you have my sympathy on the side switch thing. I'm a rightie. I think they seem worse because the last thing you want is to get hit on the other side. I'm doing good right now, cross my fingers, but sometimes i get days with multiple left siders. Sometimes they seem like an echo and sometimes they are just at a different stage but overlapping.

No advice, just sympathy. Hang in there.

Charlotte

Title: Re: chronic?
Post by leftsideonly on Oct 31^st, 2006, 1:50am

Hi Jobette

I hope things are going better for you today Hun. I too am worried about this episode being way to long and becoming chronic. My episodes usually last only 8 - 12 weeks longest. I went a long time without them - 3 years prior to this on cranking up. I am in week 14 and still getting 2 to 3 shadows daily along with the occasional 8 - 10 kip. I guess its better than the 6 - 8 kip 10's I was getting at peak.

I guess I just want you to know your not alone in being worried about the chronic thing. Remember - they can be gone as fast as they came on. My prayers are with you - lets hope for the best Hun

Peace and PF wishes,
Andre

Title: Re: chronic?
Post by Kirk on Oct 31^st, 2006, 2:18am

I was episodic from 69 to 2000. I just thought it was an abnormaly long episode. The rest as they say is history.

Title: Re: chronic?
Post by Stju1970 on Oct 31^st, 2006, 9:37am

I am sorry for those who have chronic CH. I know I don't have chronic CH caused I don't experience the same thing like most of you have had.

How does one go from Episodic to chronic CH? What caused this to happen from Ep. to Ch. Cluster Headache? Finally, what is the likelihood(%) you will become Chronic CH? Or is Chronic CH born with it?

You see my family does not have any Ep or Ch Cluster Headache. I am the first one in the family that has this condition.

I am sorry. I ask too many questions.

Thanks,
Steve

Title: Re: chronic?
Post by chopmyheadoff on Oct 31^st, 2006, 10:06am

on 10/31/06 at 09:37:28, Stju1970 wrote:

Dont worry about asking questions matey - thats why were here -
iv always been chronic.
my neurologist told me that there is about a 20% chance that an episodic will turn to a chronic but virtually no chance a chronic will turn to an episodic.

sorry if thats not what you wanted to here.
saying that though, although he is an expert, he is not a sufferer and peoples experience on here may differ from the statistical evidence.

pfw
chop

Title: Re: chronic?
Post by Bond007 on Oct 31^st, 2006, 6:30pm

on 10/31/06 at 10:06:24, chopmyheadoff wrote:

but virtually no chance a chronic will turn to an episodic.

NO NO NO NO NO NO NO NO NO NO NO NO NO

That's it! Who wants to be listed in my will??? I've just been diagnosed as "spontaneously" chronic!!! I don't know that I can handle that kind of news, dear chop!! :'(

Title: Re: chronic?
Post by Jobette on Nov 1^st, 2006, 1:47pm

What is "spontaneously chronic"?

Title: Re: chronic?
Post by Bond007 on Nov 1^st, 2006, 1:52pm

on 11/01/06 at 13:47:26, Jobette wrote:

What is "spontaneously chronic"?

It means no case of CH prior to going chronic. I was never diagnosed with CH prior to this point even though I do recall an episode in my early 20's that "could have" been a CH attack, but I can't be certain. It was a long time ago and the details of the episode are fuzzy.

Title: Re: chronic?
Post by Jobette on Nov 1^st, 2006, 11:37pm

I remember the last 12 yrs of being what I understand to be a episodic clusterheadache sufferer. The last 2 yrs i have spent alot of time trying to remember when this all began. [smiley=huh.gif] As I remember it, the first 5 yrs were just 1 to 2 very small episodes, that lasted about a week or 2. I guess the next 5 yrs were just a little worse, just enough to remember all the OTC meds that I was taking, and the drs and hospital labeling me a drug seeker :-[. The last 12 yrs are etched in the mind, body and soul. I have been in hell, I can see how this thing has evolved :o I can only speak for myself and the pain that I am feeling. I know that the pain will leave eventually! I know everyone is different in their pain tolerance and the different things that trigger, and the things that half ass help to slay the dragon. But how do we really know how and when a person slips from episodic to chronic. I know "Don't worry until it happens", but what if it is YOU dealing with this and no one to REALLY help you through it. You are the one suffering and feeling hopeless or at the least like DAMN, is this going to ever end? Oh well, sorry, but I had to let that out, maybe now I will make a better fighter :P

Title: Re: chronic?
Post by BB on Nov 2^nd, 2006, 1:13am

At this stage I dont know if anybody knows who, why and when someone with CH will become chronic.

I have heard of cases of people started as episodic then becomming chronic after some years, others ( fewer ) start out straight away as chronic, and then other people after a long time being chronic seem to revert back to episodic ... There doesnt seem to be any hard and fast rule to this.

My husband is going through his first cycle and so far it doesnt seem to want to end, started late July and still going strong, 2-3 attacks per day. We raised the question with the neurologist and was adviced that no one knows, we just have to wait and see. If he goes for 12 months straight without a break then he is chronic.

He told us to try not to worry or panic about it ( easier said than done ), just take one day at a time and try to enjoy any painfree time in between, as worrying about whether one is going to be chronic or not wont help anything, but will make one feel depressed.

So we are playing the waiting game and praying.

Painfree wishes to all.

Annette

Title: Re: chronic?
Post by MJ on Nov 2^nd, 2006, 1:46am

Twice chronic for me, only 3 year cycles with no remission each time though..

Each time I "spontaneuosly" reverted back to epi cycles of less than a year.

Chop your doc is wrong or the definition of chronic needs to be revised to over 3 years. I'm fine with a redefinition as I dont claim to be chronic just variable episodic.

Title: Re: chronic?
Post by chopmyheadoff on Nov 2^nd, 2006, 2:56am

on 11/02/06 at 01:46:05, MJ wrote:

my "doc" is Dr Silver who works closely with Professor P.Goadsby of the royal institute of neurology in London.

and at what point did i mention anything about the definition of being chronic ?