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Cluster Headache Help and Support >> Cluster Headache Specific >> What's the difference
(Message started by: CHvsTN on Jul 17th, 2006, 6:29am)

Title: What's the difference
Post by CHvsTN on Jul 17th, 2006, 6:29am
I haven't been formally diagnosed yet (had one neuro visit and expecting MRI in about 10 weeks) and I'm wondering if anyone can explain whether my CH is chronic or episodic - I seem to have a bit of both...

Nowadays I get shadows and stabs most days, and have done for at very least a year - with only a few completely PF days.

I definitely don't get Kip 7-10s daily.

My 'real' attacks come cyclically, peaking for a few weeks but lasting a few months, with gaps of months between them.

My question is, do the shadow days not count, making me episodic?

Regards,
Ritchie

Title: Re: What's the difference
Post by E-Double on Jul 17th, 2006, 9:17am
If CH and have not had 30 days consecutive pain free days in 1 calender year then one is chronic by definition.

Some chronics get hit everyday.
Some have cycles within the chronic cycle. This is me. I have high and low periods but still have attacks during low period, they are just less frequent and seem to be less intense.

You may also be presenting with Trigeminal neuralgia AND CH so they may get mixed up

Don't worry about it.

Just try to live the best you can!

It's just another label

Eric

Title: Re: What's the difference
Post by BarbaraD on Jul 17th, 2006, 11:28am
I don't know why everyone is so concerned about being chronic. You either are or you're not - so why worry about it? I've been chronic since 97 and hope that this cycle will go away and wait years to come back.

Instead of worrying about whether or not you're chronic, live in between hits.

Shadows are bad, but not as bad as a full blown hit. I have shadows all the time and have learned to just live with them and go on about my business. When I get a "hit", then I do something about it.

Years ago I figured out that when the beast is going to strike, he's going to strike and all the worry about when or where was a waste of time. You just learn to live with what you have.

Hugs BD

Title: Re: What's the difference
Post by CHvsTN on Jul 17th, 2006, 11:42am
Yeh, I suppose you're both right. It was just that the two types seem to be treated differently sometimes in some of the threads.

PS I didn't know chronic CH had cycles as well - I thought that was the main difference between them.  [smiley=huh.gif]

Thanks for the replies,

Ritchie

Title: Re: What's the difference
Post by E-Double on Jul 17th, 2006, 12:38pm

on 07/17/06 at 11:42:29, CHvsTN wrote:
Yeh, I suppose you're both right. It was just that the two types seem to be treated differently sometimes in some of the threads.

PS I didn't know chronic CH had cycles as well - I thought that was the main difference between them.  [smiley=huh.gif]

Thanks for the replies,

Ritchie


yes, but some treatments sometimes help both

Title: Re: What's the difference
Post by LeeS on Jul 17th, 2006, 1:14pm
Hi Ritchie

I personally have major doubts as to the current classification system of CH, especially in terms of just episodic and chronic.  This system appears to be based on an arbitrary remission timescale as determined (and quite recently changed) by the International Headache Society, presumably purely for medical classification purposes to assist in structured research programmes into differing treatments, and as you say, to make appropriate recommendations for abortive and preventative medication over time.

I've yet to find anyone - be it chronic or episodic - who has identical bout patterns; despite the obviously circannual and circadian nature of our disease.

Good luck with your battle.

-Lee

Title: Re: What's the difference
Post by Barry_T_Coles on Jul 17th, 2006, 7:02pm

on 07/17/06 at 11:28:28, BarbaraD wrote:
I don't know why everyone is so concerned about being chronic. You either are or you're not - so why worry about it? I've been chronic since 97 and hope that this cycle will go away and wait years to come back.

Instead of worrying about whether or not you're chronic, live in between hits.

Shadows are bad, but not as bad as a full blown hit. I have shadows all the time and have learned to just live with them and go on about my business. When I get a "hit", then I do something about it.

Years ago I figured out that when the beast is going to strike, he's going to strike and all the worry about when or where was a waste of time. You just learn to live with what you have.

Hugs BD

I'm with Barb on this one cept I only went chronic the last 18 months.
Life's too short I say so I just get on with it and enjoy the good times and it's better than being run over by a MACK truck. ;;D

PFD's
Barry

Title: Re: What's the difference
Post by Charlotte on Jul 19th, 2006, 8:27pm
I am trying to do the things I need & want in the shorter time between hits.  I don't necessarily worry about being chronic but I sure would like a year or two off.

It also isn't whether you treat them differently, it's just that something will give you relief in a low cycle that won't stop anything in a high cycle - at which time you just get through it the best you can.

Charlotte

Title: Re: What's the difference
Post by kevinpix on Jul 23rd, 2006, 6:19pm
I beleive eposodics happen only certain times of the year where chronics happen all of the time, no matter what.  I'm chronic.  I get 2 to 4 a day.  Last year i had trigenial noralsia surgery.  No pain, pills, or terror stricken nights. I'm numb on half my face, mouth, inside and out, nose and ear.  Way better than the way I was living before surgery.  Cost? About $5,800.  Dr. Wayne Hurt of Houston,Tx. did the surgery.  Scars? None.  Stiches? Nope on that too.  Complications?  Some, but nothing like the hell I was forced to live.  Hope ths sheds some light on this for you and my fellow "heads".  Good luck and God bless.  Miracles are on the horizon..

Title: Re: What's the difference
Post by chopmyheadoff on Jul 24th, 2006, 4:36am

on 07/23/06 at 18:19:07, kevinpix wrote:
I beleive eposodics happen only certain times of the year where chronics happen all of the time, no matter what.  I'm chronic.  I get 2 to 4 a day.  Last year i had trigenial noralsia surgery.  No pain, pills, or terror stricken nights. I'm numb on half my face, mouth, inside and out, nose and ear.  Way better than the way I was living before surgery.  Cost? About $5,800.  Dr. Wayne Hurt of Houston,Tx. did the surgery.  Scars? None.  Stiches? Nope on that too.  Complications?  Some, but nothing like the hell I was forced to live.  Hope ths sheds some light on this for you and my fellow "heads".  Good luck and God bless.  Miracles are on the horizon..



i dont like this mate, dont mean to flame you but are you sure your not dr Wayne Hurt of Houston Tx ??

you seem to be blanketing this statement onto the end of every thread, regardless of what its about  >:(

6 grand for a surgical procedure that is going to leave me drooling and unable to blink in one eye ???

no ta

Title: Re: What's the difference
Post by BarbaraD on Jul 24th, 2006, 5:51am
Chop

Dr. Wayne Hurt is about the BEST doc for this kind of surgery. He did mine in 99 (didn't work but I was out of options at the time and it seemed like a good idea). Hurt specializes in TN and CH - knows his stuff. Even tho mine didn't work (and he gave me the odds before going in), I'd recommend him if anyone decided to have this done.

Hugs BD



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