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Message started by evie on Jan 25th, 2012 at 5:38pm

Title: are episodic turning to chronic ?
Post by evie on Jan 25th, 2012 at 5:38pm
hi everyone
im feeling really depressed at the moment i suffer with episodic clusters that last no more than three months at a time however the bout that i am in now i have had for seven months now  :'( :'(can anyone tell me does this mean my clusters are now turning into chronic instead of episodic i really hope not please can anyone help :( :(

Title: Re: are episodic turning to chronic ?
Post by Bob Johnson on Jan 25th, 2012 at 8:32pm
Two replies: 1. trying to forecast the future is a fast route to anxiety and failure. Right now, your hands are full taking care of the immediate situation. That's enough.

2.
Curr Pain Headache Rep. 2002 Feb;6(1):65-70.   

 

What predicts evolution from episodic to chronic cluster headache?

Torelli P, Manzoni GC.

Headache Centre, Institute of Neurology, Strada del Quartiere, 4, Parma 43100, Italy. paolatorelli@libero.it

Over the last few years, attention has increasingly been focused on the evolution of cluster headache over time. Predictive factors have been identified that are correlated with an increased risk of unfavorable evolution from the episodic form to the chronic form of cluster headache. Late onset, the presence of sporadic attacks, a high frequency of cluster periods, and short-lived duration of remission periods when the headache is still in its episodic form all correlate with a possible worsening of the clinical picture over time. The reasons for evolution of episodic cluster headache to chronic are still unknown, but some factors, such as head trauma and other lifestyle factors--eg, cigarette smoking and alcohol intake--have been suggested as having a negative influence on the course of cluster headache over time.

PMID: 11749880 
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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.

PMID: 16362185 


Title: Re: are episodic turning to chronic ?
Post by wimsey1 on Jan 26th, 2012 at 7:19am

Quote:
the rarest form is episodic CH arising from chronic CH


So sad. And here I was hoping that "this year" would be the magic year. Sigh. lance

Title: Re: are episodic turning to chronic ?
Post by LasVegas on Jan 26th, 2012 at 11:04am
evie,
Worrying about the unknown will emotionally hurt you, with anything in life, specifically CH's.

My advice is be concerned with how to tame the beast today, not worry about taming it in the future.

Learn what you can from this website, lots of reading, many fellow sufferers to assist answering your questions, etc.  Education will help overcome many of your concerns.

What works one cycle, may not work the next.  The beast often morphs each cycle differently and sometimes morphs within a cycle.

What preventive med are you taking and at what dosage?

What are you using to abort attacks?

We are here for your support.  You are not alone. ;)

-Gregg in Las Vegas

Title: Re: are episodic turning to chronic ?
Post by Matt Miller on Jan 26th, 2012 at 3:21pm
Evie,
Just to ditto what everyone else said, no use scaring yourself for a future that may/maynot happen. With the beast its best to deal with it as it comes, and then enjoy your PF time. That is Life, not the CH's.

It has taken me awhile to actually come to grips with that, i've been riding the demon (or is it the other way around?) for 10+ years and i'm just now coming to the realization that all i can deal with is the now. As the Ram Dass says "Be Here Now".

That advice, btw, sucks when Here Now is a raging Kip10er, but that's when i switch to my next mantra, "This too shall pass".

I am not one for pretty little words to make everything better, but i've found those 4 words help me when nothing is aborting an attack and i'm just in it for the ride...it WILL pass, then i can go on with my REAL life.

Trust me on one thing though, this place and these people will be your relief. As isolating as CH is, there isn't a single person on here who isn't either directly hit with CH, or is a supporter of one. WE do get it!! If it's 2:30 in the morning and your getting hit, come on and vent. Someone will know what you are going through EXACTLY! That, in and of itself, is liberating to me.

PFDAN to you, and I wish you all the best, and all the support you need.

Title: Re: are episodic turning to chronic ?
Post by Lenny on Jan 26th, 2012 at 3:52pm

wimsey1 wrote on Jan 26th, 2012 at 7:19am:

Quote:
the rarest form is episodic CH arising from chronic CH


So sad. And here I was hoping that "this year" would be the magic year. Sigh. lance


Lance...there is hope...it happened to me Nov.2007or 2008 (one of those years)...it also happened to a few others that were chronic for many years as well on this site...so please dont think it cant happen for you...wishing you nothing but the best.....Lenny

Title: Re: are episodic turning to chronic ?
Post by Tara Ann on Jan 26th, 2012 at 4:24pm
Great advice/comments from those ^above.  Just wanted to say, try your best to take some serious deep breaths.  In through the nose, out the mouth (make an O)  Stressing yourself isn't good no matter what.  HUGS!

Title: Re: are episodic turning to chronic ?
Post by evie on Jan 26th, 2012 at 6:10pm
hi everyone
just wanted to say thankyou so much for all your support just had a really dark day yesterday feeling sorry for myself you would think after 17 years i would be use to this at least i am on meds but evan the amount of meds i put in my body scares me i take 8 predisnolone a day only for 2 weeks doc said they are dangerous long term 160mg verapamil a day i have been taking the vitamins advised on this site and i take 15flo oxygen for mild attack and immigran injection for the more severe i always feel better talking on this site such great people who suffer more than i do but are still willing to support me  ;D ;Dthanks again i will take all your advise and just tackle each day as it comes  ;D

Title: Re: are episodic turning to chronic ?
Post by Guiseppi on Jan 26th, 2012 at 6:45pm
feeling sorry for myself you would think after 17 years i would be use to this

33 years and I still throw the occasional pity party for myself. CH sucks, we understand. All of us have been there done that, just make sure you always get up again. [smiley=hug.gif]

Joe

Title: Re: are episodic turning to chronic ?
Post by Mike NZ on Jan 27th, 2012 at 12:53am
Hi Evie

We all have our dark days and then other days are just wonderful. It's a matter of concentrating on the better days and making the most of them, between visits from the beast.

It isn't too common to use oxygen for mild attacks and imigran (imitrex) for the more severe ones. Oxygen works just great on even the most severe Kip 10 CHs. You might also want to see if you can have a higher flow rate as most people find the higher the flow rate, the quicker the abort time.

Talking on here, helping others and making a differnce is what really helps me a lot, for my CH and my other headaches too.

Title: Re: are episodic turning to chronic ?
Post by LasVegas on Jan 27th, 2012 at 2:30am
Evie,
For most CH sufferers, 160mg Verapamil is an extremely low dosage to effectively treat CH's.

15 lpm of o2 is too low a flow rate to hyperventilate.

and the vitamin regimen is a gamble.

I would recommend finding doctor who is knowledgeable about CH's or at least one who is willing to prescribe you with proper treatment.  The OUCH UK website might be of local assistance for you.

Hope you are able to get qualified help soon.

-Gregg in Las Vegas

Title: Re: are episodic turning to chronic ?
Post by Bob Johnson on Jan 27th, 2012 at 8:32am
Missed your location on first reading: contact your excellent support group about how to get a direct referral to a headache clinic, by-passing local docs.
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Verap. dose is quite low. Suggest you print out this protocol, which is widely used in the U.S., and use it to discuss some changes in your treatment.

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.


Title: Re: are episodic turning to chronic ?
Post by LasVegas on Jan 27th, 2012 at 11:53am
Evie,
For most current info on Verapamil, see a thread titled "Verapamil Dosage" under the Medications/Treatments board.

Should definitely help you and your doctor put together an effective treatment plan. ;)

-Gregg in Las Vegas

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