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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Am I Becoming Chronic??? Oh Hell!
        
(Message started by: Bent on Apr 18^th, 2007, 9:35pm)

Title: Am I Becoming Chronic??? Oh Hell!
Post by Bent on Apr 18^th, 2007, 9:35pm

I've been episodic for 20 years. Ch's come every 14 - 20 months and last 3 - 5 weeks. I've tried everything with different levels of success. Last year, I completely avoided the episode by taking Kudzu. This year, I'm getting killed. I'm into my fourth month. Finally I'm trying Topamax, and it's working. Nothing else did. Not Trex, not seeds, not steriods, not kudzu. 25 mg. of Topamax and I feel much better. Hard to believe that such a low dose is working. I know the monster is still there, I can feel it lurking. The worst side effect is fatigue. I just 8) don't feel very energetic. I can live with that. My biggest fear is what is next, Chronic CH's. When will this stop?

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by E-Double on Apr 18^th, 2007, 10:04pm

chronic = 1 yr+ w/out a break of 30 consecutive painfree days

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by ClusterChuck on Apr 18^th, 2007, 11:07pm

Chronic is not the worst thing that can happen to you. You can adjust to it. Plenty of us have.

I hope you don't go chronic, but if you do, it is not the end of the world.

Chuck

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by chrisw on Apr 19^th, 2007, 10:55am

on 04/18/07 at 23:07:35, ClusterChuck wrote:

Chronic is not the worst thing that can happen to you. You can adjust to it. Plenty of us have.

I hope you don't go chronic, but if you do, it is not the end of the world.

Chuck

Chuck,

I think I am becoming chronic, and it feel like the worst thing that could ever happen.

These f*&%##g things have taken so many things away from me. I used to like to go to wine tastings with my mother, (cant do that anymore) I used to be in a book club (cant do that anymore, reading for too long makes my shadow pain very strong), I used to like to go outside and play with my kids(I still do that, but I get no joy anymore because I am so tired) etc. etc. etc.

I really miss cuddling up with my husband in bed and going to sleep . Now i usually sleep on the sofa, to be near my tank.

I dont know how you keep your cheerful attitude, Chuck. Maybe a person can get used to anything, and it just takes some time to accept your lot in life,
That doesnt mean it doesnt suck REALLY BAD

Sorry for complaining
chrisw

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by Bob_Johnson on Apr 19^th, 2007, 11:02am

Last sentence is the answer.
-----------------
J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25. Related Articles, Links

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 - indexed for MEDLINE]

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by Guiseppi on Apr 19^th, 2007, 11:21am

I was like you for over almost 30 years, 2 cycles a year like clockwork, at month 8 of this last cycle I was beginning to panic, worrying about the C word...(Chronic you potty minds!!!!)....and it finally broke. I agree going chronic isn't the WORST thing that could happen to you.......I still breathed a huge sigh of relief when the cycle finally broke. Hang in there.

Guiseppi

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by Bob P on Apr 19^th, 2007, 3:30pm

20 years with a 4-5 week episode every 8-9 months. Then it changed to an episode every couple of years, 12 weeks to 5 months long. Go figure. My last remission was 3 years 3 months long and the last episode was 5 months long. This is year 36 for me. I'm now 2 years into this remission and waiting to see what will happen.

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by Chillrmn1 on Apr 19^th, 2007, 6:43pm

Hang in there, after my last one going into 9 months I was worrying about the same thing, then it terminated. I breathed that same sigh of relief.

Bob P - I hope you stay PF and never go in cycle again.

I'm at 23 months PF now and wonder every day when the beast will return.

Rgards

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by sandie99 on Apr 20^th, 2007, 11:33am

Chris,
I hope it's just one long cycle and not start of becoming chronic.

I've been episodic, then chronic and back to episodic. It's not the end of the world, although it probably feels that way to you now.

PF wishes,
Sanna

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by Bob_Johnson on Apr 20^th, 2007, 12:59pm

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

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by burnt-toast on Apr 21^st, 2007, 3:08pm

I'm with the "still unknown" crowd. I believe lifestyle and other factors are shots in the dark.

I came out of the gates chronic. Over the last 12 years or so I have had a few very short breakes - week or so here and there but mostly unpredictable fluctuations in frequency and severity without significant remission.

I smoke??? but CH isn’t limited to smokers. No history of CH or even migraines in my family. Any heavy drinking ended by my mid-20s - when CH manifested itself, it would be a stretch to say that I drank more than a few beers a month. Now I don’t drink at all. I was knocked unconscious for over 24-hours, playing HS football - an auto accident at 19 also knocked me unconscious???

Given that alcohol is such a common and near instant trigger for many sufferers - I believe there may be importance in the Hypothalamus and Pituitary response to alcohol. The two most noticeable effects, sexual behavior and urinary excretion may provide a starting point for research.

Although some suffers appear to manifest CH earlier in life – a common trait of CH is to manifest itself around middle age. Males secrete lower levels of testosterone and females lower levels of ovarian hormones as they age. Some claim sex can abort CH attacks (and my hat goes off to those that can have sex during attacks) but the complex sex hormone changes involved in aging, sexual arousal and orgasm may provide answers. Alcohol depresses nerve centers of the hypothalamus, increasing sexual arousal while decreasing performance. This may indicate a direct relationship between levels of sex hormones and CH.

Anti-diuretic hormone (ADH) levels affect kidney function. When AHD levels drop the kidneys can reabsorb less water and consequently produce more urine. Some claim that drinking lots of water is an effective way to abort CH attacks. Alcohol inhibits pituitary secretion of AHD and reduces circulating levels of AHD in the body. This may indicate a direct relationship between AHD levels and CH.

Maybe it’s a combination of factors but my money’s on Hypothalamus and Pituitary issues that affect hormone levels. The effects many of us associate with alcohol and alcohol’s already recognized nearly instantaneous effect on the Hypothalamus and Pituitary may be pointing to possible solution(s).

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by Katherinecm on May 6^th, 2007, 9:04pm

Your loss of hope is what concerns me.

Chuck was right, going chronic is not the worst thing that can happen to you. But the depression and dread of fearing the pain might be the worst thing that can ever happen.

I don't want to minimize the pain, it sucks. But you do adjust, and eventually the kind of pain that was totally unbearable before becomes more and more bearable. Maybe your pain tolerance goes up a bit, I'm not sure. I do know that for me, the moments when I feel good are- well, lets just say I value them so much more than I ever did before.

I still have a lot of adjustments to make- I can no longer be the person I was, and I haven't quite figured out who I am, or who I want to be now. But after 2 years, I can tell you my hope has returned.

If you're the literary type, there's a book called "How Proust Can Change Your Life," that examines the advantages of suffering. How Proust suffered and how that gave him advantages in his writing. If you feel like something deep that gives you some perspective, check and see if there's an audiobook or have someone read it to you. Or at least the chapter on suffering.

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by UN solved on May 7^th, 2007, 2:09pm

Worrying about the next hit or cycle, worrying about becoming chronic .... can be just as bad or worse than the actual cycle itself. Don't let the anxiety and fear take over .. it'll just make everything worse !!

Goodluck & best wishes

UNsolved

Title: Re: Am I Becoming Chronic??? Oh Hell!
Post by taraann on May 8^th, 2007, 3:59am

No need to be sorry for complaining. You are venting. And in my opinion, that is good for you mentally. Hang in there. And as for worrying, don't worry about about something you can't prevent. What ever is going to happen will happen and worrying about it isn't going to get you anywhere is it?