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        Cluster Headache Help and Support >> Cluster Headache Specific >> How did your episodic turn chronic
        
(Message started by: pierrejill on Mar 15^th, 2008, 10:23pm)

Title: How did your episodic turn chronic
Post by pierrejill on Mar 15^th, 2008, 10:23pm

As a newbie I am full of questions...

Usually my episodes only last 30 days and occur every 2 years in the fall (has been this way for 20 years). But this episode began in January and is now at almost 70 days.

I know to be labelled chronic, you have to have had the episode last over 1 year. But I am curious if this could turn into a year for me, or is it just because it is at an odd time for me??

So I would like to hear how your pattern was when you changed from episodic to chronic(...I know probably not the most optimistic question, but curiousity killed the cat)

Title: Re: How did your episodic turn chronic
Post by brewcrew on Mar 15^th, 2008, 10:37pm

I've had two chronic periods - each lasting about 18 months. I don't remember what it was like when I was going chronic the first time. I probably said, "man, this sucks." Then I said, "man, this sucks." Then before you know it I was looking at my headache log and I said something like, "shit, it's been 9 months since this cycle started."

I don't know, man. I don't remember any telltale signs when it was happening. Just after it happened. Don't get yourself into a tizzy about it. Take it one hit at a time and live your life in between them.

Title: Re: How did your episodic turn chronic
Post by Sean_C on Mar 16^th, 2008, 3:54am

I was chronic for ten, and had a mysterious three year break, and have been episodic since they've come back.

What meds are you taking?

Title: Re: How did your episodic turn chronic
Post by sandie99 on Mar 16^th, 2008, 8:00am

Well, nothing special changed; hits just kept on coming and coming at a time when I was already PF before. That's it.

Sanna

Title: Re: How did your episodic turn chronic
Post by FREDRICKS on Mar 16^th, 2008, 11:16am

These things have a habit of changing cycle, patterns etc whenever it feels like it.

I am too going through something similar to you, 10 years sufferer every 2 years jan/feb for 4-6 weeks. my last cycle lasted on 3 weeks this one is now reaching week 7 so dont try to read into timescales to much. Other factors can play a part, i had a bad bout of Flu over the christmas break and have tried Meds for the first time which i personally feel may and only may prolong cycles. Many other people have changes in patterns/cycles unfortunately for us we can put a finger on it!!!

Keep your chin up as they say in the UK

Question for you - have you ever had a change in sides??? between or during cycles???

Regards

Title: Re: How did your episodic turn chronic
Post by Bob_Johnson on Mar 16^th, 2008, 12:21pm

J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.

Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.

Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.

Publication Types:
Review

PMID: 16362185 [PubMed]

Title: Re: How did your episodic turn chronic
Post by pierrejill on Mar 16^th, 2008, 4:34pm

Thank you for all of your input!!! We are still trying to be very positive!! But I still can't imagine having this for 1 year or longer...my heart and amazement goes out to all of you that have had to endure that!!! I hope I only have half your strength!

Sean C- You asked what meds I have been on....its a long list:
imitrex for attacks
verapamil
verapamil and topamax (had a drug reaction)
verapamil and depakote (worked but had a drug reaction)
verapamil and lithium (nothing)
verapamil and keppra (verdict still out...just began 5 days ago)
verapamil, keppra and methergine w/o imitrex (verdict still out...just added methergine 3 days ago)

In between all of these I am getting occipital nerve blocks that decrease the intensity of each attack.

I have also tried a block which requires lidocaine on a 6inch q-tip placed 5 inches into my nose...no fun and it didn't work!!

I have also been on prednisone and dexamethasone twice during this episode mixed in with the above combinations.

If you have any other suggestions I would love to hear them!!!!

Fredricks- My attacks have always been on my left side...no changes.

Title: Re: How did your episodic turn chronic
Post by Batch on Mar 16^th, 2008, 7:14pm

Oxygen? And if you did try it, what was the flow rate and type of oxygen mask?

V/R, Batch

Title: Re: How did your episodic turn chronic
Post by E-Double on Mar 16^th, 2008, 7:33pm

OMG KEPPRA evil.... that's it.

hugs and good luck

Title: Re: How did your episodic turn chronic
Post by LeLimey on Mar 16^th, 2008, 8:36pm

I don't have a proper answer for you, only how it happend for me. Whether there is any actual significance or not is as open to speculation as anything else!

I had had what I am now certain were cycles every speing and autumn since 1995, 2 days after my son was born. I thought it was killer sinusitus which took 5-6 doses of antibiotics to shift each time ::) funny how sinusitus can just hurt twice a day isn't it?! (heavy sarcasm!)

In 2003/4 I was very ill and was on 80mg of pred per day for over 9 months. I started having other problems so was switched overnight to a different steroid in the August and two days later started my "sinusitus". I was diagnosed officially with CH and given the right meds etc and have been in cycle ever since.

I don't think Pred "sent me chronic" but I do think stopping it like that, even though under medical supervision and for a different steroid was what triggered that cycle. Maybe it was the fact it started at the wrong time of year, maybe it was the other illness - maybe as EDuble said on another thread it's because he's just so flippin' handsome! ;)

However and whyever, it is what it is. Life is what you make it and I will not let this get the better of me as much as I can!

Hang in there, episodic or chronic, we'll all get through this the same way. Together.

Helen

Title: Re: How did your episodic turn chronic
Post by pierrejill on Mar 18^th, 2008, 5:49am

Batch-

I knew as soon as I posted that I forgot oxygen...it seems to work for so many of you, but not me!

I have tried it a few different ways..beginning of an attack, middle of a "regular" attack, and in the hospital during a "super" attack.

One thing has been consistent: mask with rebreather and 10L of O2...after about 10 min the noise is driving me so batty that I have to stop.

It did work once when I happen to get an attack at my doctor's office. She gave me the oxygen at the beginning and miracle the attack was gone. So we hooked me up with home oxygen...worked for 1-2 more attacks (not in a row) then nothing!!

Title: Re: How did your episodic turn chronic
Post by brewcrew on Mar 18^th, 2008, 6:16am

on 03/18/08 at 05:49:37, pierrejill wrote:

One thing has been consistent: mask with rebreather and 10L of O2...

Either you got your terminology mixed up, or there's your problem. It should be:

A non-rebreather mask (causing you to breathe 100% O2 all the time).
Crank up the volume to a minimum of 15lpm. Some go as high as 20-25lpm.

Title: Re: How did your episodic turn chronic
Post by Kevin_M on Mar 18^th, 2008, 6:38am

Agree with Brewcrew on mask type and trying higher flow rate. The sound of oxygen filling a bag is not as annoying as getting hit, some though have sounds or light that bother during an attack. The 10 minute time you tried should be sufficient. What has been the level of verapamil?

Title: Re: How did your episodic turn chronic
Post by lionsound on Mar 18^th, 2008, 1:23pm

on 03/16/08 at 19:33:00, E-Double wrote:

OMG KEPPRA evil.... that's it.

hugs and good luck

yeah, be careful with the keppra. The side effects can sneak up on you and be very nasty.

Title: Re: How did your episodic turn chronic
Post by purpleydog on Mar 19^th, 2008, 12:10am

The only thing I can say is that I started getting hit one year, and it just never went away. My cycle never stopped, the hits just kept on coming.

You are 70 days into a cycle. Lot's of people have cycles that last for months on end. Don't spend your time worrying about whether you are going to be chronic, you have a long way to go before that declaration is made.

You may want to give the O2 a try again. Using a non-rebreather mask at a high flow rate (15LPM or higher) at the first sign of a headache works best for most people. But, you've gotta hit it right away.