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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Chronic or not
        
(Message started by: unsolved1 on Aug 13^th, 2005, 8:53pm)

Title: Chronic or not
Post by unsolved1 on Aug 13^th, 2005, 8:53pm

Okay ... I've been chronic for almost 5 years. My last cycle began in October of 2000 and has been going relentlessly ever since .... until recently. I've found that IV histamine desensitization helps ALOT. I did it last in June and was released on June 19th. I only had 3 attacks right after the July 4th weekend (thanks to a few beers) and nearly 6 pain free weeks afterwards. Now my attacks have resumed.

I know i'm not technically chronic ... but I don't think I fit in as being episodic either. So am I "chronisodic" or what?

UNsolved

PS. Man I really enjoyed my pain free time. I wish I could go into the hospital now for more Histamine but I can't (no one to watch my kid until the end of August). BTW, I highly recommend Histamine desensitization for chronics

Title: Re: Chronic or not
Post by ClusterChuck on Aug 13^th, 2005, 11:07pm

Where did you have this procedure done? If it is what my headache clinic doctor was talking about, he said it was only done in one hospital in the USA. I forgot which one he said it was done in.

Chuck

Title: Re: Chronic or not
Post by CHTom on Aug 13^th, 2005, 11:09pm

You sound chronic to me-5 years of continuous attacks qualifies you. Chronics will sometimes go into spontaneous remission for no reason at all (lasting for various lengths of time) or perhaps due to some treatment (I disagree with you on the histamines, but what is life without disagreements). Now your attacks have returned, I assume daily without any significant pain free time, so chronic you are and I am sorry about that as I am chronic, no breaks longer than a few hours for over 3 years. Maybe the histamines will work again for you-were you at the Diamond Clinic for that? Good luck and with you in spirit.

Title: Re: Chronic or not
Post by clarence on Aug 14^th, 2005, 12:31am

I may be wrong, but I remember reading a post of don's (?) that said that you have to have at least 2 weeks pain free (or is it 4?) and those 2 weeks must come without meds.

If that is the case, your PF time is due to the med treatment, and I would think you're still chronic. Sorry. But, I think I like the term "chronisodic" better.

And, like I said, I may be wrong about that. I am fully open to someone correcting me. Especially if she is wearing black leather and has a whip. Man am I tired.

Casey

Title: Re: Chronic or not
Post by Jasmyn on Aug 14^th, 2005, 1:54am

:( Sorry Unsolved you sound very chronic to me!

PF wishes to you!

Title: Re: Chronic or not
Post by Lizzie2 on Aug 14^th, 2005, 3:01am

on 08/13/05 at 23:07:28, ClusterChuck wrote:

Chuck,

I believe the only place it is done (at least as far as I know) is through the Diamond Headache Clinic in Chicago.

I'm sure Michael can correct me if he knows differently since he has been a few other places, too!

Michael,

So sorry to hear that the attacks have resumed. :( I was so hoping that you'd stay PF for a long long time (like forever!)..... Can you do another histamine treatment or do you have to wait awhile?

Thinking of you!

Carrie :)

Title: Re: Chronic or not
Post by Sean_C on Aug 14^th, 2005, 4:48am

They judge an episodic clusterhead by the amount of PF time they have between clusters.

So if you have a patient thats pf for 32 continuous days and the other 333 days are not pf your episodic right?

It all sucks either way. Glad you got some pf time Unsolved, nothing better than that ;)

Sean..........................

Title: Re: Chronic or not
Post by Svenn on Aug 14^th, 2005, 4:55am

As far as i know the definition of an cronic is continious hits 50 weeks a year,and not more then 14 days PF.
The PF-time is split troughout the year and not 14 days at once.

*Sorry for my babelfish-english* here,but thats what the "medical bible"say here on that definition

Svenn

Title: Re: Chronic or not
Post by Lizzie2 on Aug 14^th, 2005, 7:43am

Well, I just checked out the IHS ICHD-2 description for chronic cluster. I know this topic has come up here before, but I wanted to get it right if I commented!

It says the following regarding chronic cluster headache:

Quote:

Cluster headache attacks occurring for more than one year without remission or with remissions lasting less than 1 month.

And regarding episodic cluster headache:

Quote:

Cluster headache attacks occurring in periods lasting 7 days to 1 year separated by pain-free periods lasting 1 month or longer.

So....just a couple things remain in the questions.
1. There is no mention on whether or not meds are involved in the remission period - I would expect that this 1 month remission period could be with or without meds, but that would be a good question for the IHS revision committee, or a neuro well-versed in the ICDH in general!
2. The episodic definition states that the attacks last 7 days to 1 year in duration...then separated by at least a 1 month remission period. So - what of the person who has attacks for greater than 5 years, leaving them chronic for that period of time and then has a greater than one month remission?

What I would suspect, regarding question #2 is that nobody could say for sure until you have another remission and they could gage it by the length of time of this next (hopefully very short) episode. I'd say if this episode lasts less than 1 year and you do have another remission of greater than 1 month, then perhaps at that point you could be classified as episodic? For now it's a bit of a wait and see type thing. But again, this would be a question for someone well-versed in the ICDH to answer. I really couldn't answer any of this with any certainty, as you know!

The ICHD-2 does state that it is possible to switch from chronic to episodic, but I do believe most of us knew that already. :)

As a bit of an example of something I witnessed at AHS - proposed revisions were created that would change the guidelines for chronic daily headache. These revisions are going to be submitted to the IHS. After listening to the initial presentation on these revisions, I was excited about almost all of the changes that were being made (as they changed the guidelines to be much more similar to what I was taught at Jefferson - as well as to be more fitting to my one chronic daily headache type, New Daily Persistent Headache). However, I was still left with a question even after all of these changes. They stated that an NDPH patient would have to be a new-onset headache sufferer - aka no headache history. I questioned Dr. Silberstein about it, but I was still confused after he answered me. I believe it may have been Dr. Lipton who finally described it in a way that made sense - but I'll have to look back at my notes.

Just wrote that to make an example that there are always questions remaining about the IHS criterias and also many cases where people don't fit into a guideline box for a particular headache type. Does this mean they don't suffer from that headache? I would then imagine that it's up to a trained migraine and headache specialist to be able to properly apply the guidelines to each patient they diagnose and treat. The guidelines remain a work in progress, although many great changes have come to play!

I hope this helps at least a little bit!

Carrie :)

Title: Re: Chronic or not
Post by unsolved1 on Aug 14^th, 2005, 9:06am

The Diamond Headache Clinic was the only plce to do Hitamine Desensitization until I came along ... we now also do it here at my local hospital (Floyd Memorial Hospital). Some of the people (nurses) at Diamond was shocked when they learned I had it done locally. hehehe [smiley=laugh.gif]

The Histamine has definatley thrown a monkey wrench in my headache pattern. I will have it done again (as long as my headaches are continuing) locally and I'm hoping for another long(er) break.

Thanks everyone

Michael

Title: Re: Chronic or not
Post by lionsound on Aug 14^th, 2005, 9:08am

Mike,

"chronisodic" or "epichronic" ;;D whichever you are....

I'm really glad you enjoyed your PF time. I hope that you are able to find more soon!

-lionsound

Title: Re: Chronic or not
Post by clarence on Aug 14^th, 2005, 2:18pm

That's great info Carrie, thanks. I feel smarter after reading your posts.

Casey

Title: Re: Chronic or not
Post by E-Double on Aug 14^th, 2005, 8:30pm

I prefer Epi-chronic.

Either way I am so happy that you did have a break and I wish you many more PF days ahead!!!

Title: Re: Chronic or not (updated)
Post by unsolved1 on Aug 14^th, 2005, 9:05pm

Went to the ER for a shot of DHE, a shot of Decadron, , a shot of Morphine/Phenegran, and a Medrol Dose Pak. Attacks have stopped. (Fingers are crossed) Wishing I was getting Histamine now.

UNsolved

Title: Re: Chronic or not
Post by eyes_afire on Aug 14^th, 2005, 9:35pm

Quote:

1. There is no mention on whether or not meds are involved in the remission period - I would expect that this 1 month remission period could be with or without meds,

Hmmm... I don't know... In my opinion, if meds are 'masking' a medical condition, then it's not a 'remission'. Diabetics take insulin, manic-depressives take lithium, and neither is in remission. I would expect the 1 month remission would have to be without meds (otherwise I'd be taking verapamil while in 'remission'... and that don't make sense to me).

I realize that the term 'remission' is used for cancer patients after chemotherapy... but in that case the treatment has a lasting effect on the symptoms even after discontinuation of the treatment. A comparable CH analogy would be the shroom treatment leading to a remission for many that have tried it. However, if I try to stop verapamil when in cycle, I will be brought to my knees within 2 days... even if I just experienced 3 pain-free weeks thanks to verapamil (of course, technically an argument could be made that perhaps a cycle ended and a new one started in that period of time, but I ain't buying that ;) )

--- Steve

Title: Re: Chronic or not
Post by Kris_in_SJ on Aug 24^th, 2005, 8:17pm

Ditto to Steve.

To me, remission means no symptoms - and no meds to mask the symptoms.

Each and every day I thank my Higher Power for making me a tried and true "episodic." Meaning 3-4 years PF without any meds between episodes. I've been on this board long enough to know I'm one of the lucky ones.

Keep up with the therapy that works for you, Michael. And keep the hope that the next remission will be long and true.

Hugs,

Kris

Title: Re: Chronic or not
Post by don on Aug 25^th, 2005, 7:35am

Chronic is 1 year of CH with less than 30 days PF with or without meds.

Title: Re: Chronic or not
Post by Lizzie2 on Aug 25^th, 2005, 9:35am

on 08/25/05 at 07:35:02, don wrote:

Chronic is 1 year of CH with less than 30 days PF with or without meds.

Bingo...

Also, Steve and Kris - I wasn't saying I necessary agree with the definition of the 'remission' being due to meds and not just for people who experience it without meds, but that's how they have it set up...which is why it still leaves questions.

In the long run, the ICHD will always leave questions that they'll have to revise and edit until the end of time - or maybe until they 'cure' the headache disorders...which really would be a nice thing - but probably not likely in our lifetime!

Casey - Thanks for the above compliment - not sure I'm worthy of saying that you feel smarter after reading my posts! LOL Basically I do tend to lead the life of a nerd - have always preferred textbooks and journals on topics I love instead of partying, etc! I had an absolute blast at the American Headache Society conference.....which probably sounded like the opposite of fun to all I spoke about it with!

Then that's who I am, though!

I'm chronic - can't seem to get that 30 days....on occasion I used to get a week here and there (without the CH, not without the NDPH), but that was back when I took intermittent steroid tapers. Now - not so much... I may buy myself almost a day without them by taking Frova, but they usually come back that night if I take the Frova in the morning. Always did cherish every second of feeling even remotely better!

Carrie :)