Started a new seried of Ch about 10 days ago, seems to be converting from episodal to chronic.
1st started 20 years ago, episodes every 2 months lasting 3-5 days once a day. As I have gotten older, remission lasts longer, as do episodes. Each series i different, from mild to excrushiating. Now remission is 2-3 years, episodes 2 to 3 weeks, and 2 to 3 a day. This present episode never leaves, just diminishes for a while, then becomes bad 1/2 hr after sleep and before waking. Hope this one leaves, but don't know what to expect next time.
Been to the Neuro Dr's, been given meds that damn near ruined my life, almost quit jobs due to side effects. Found it better to suffer the pain then add to with side effects. There has to be something new in the last few years to help these CH's and not alter my moodes and decisions

I understand your question--but it is the wrong one to ask! We can't predict the future with CH. Sorry...  The issue is: How do I effectively care for myself?

Please print the full version of this article (link right after "from") and get some grounding about what CH is, how to treat, etc.

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the best overview articles I've seen. Suggest printing the full length article if you are serious about keeping a
good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Welcome to the board, Bob's given you some great reading to get started on. The first 20 years of my cycles were so predicatble you could set your watch by them. As I've gone into my 40's...snow plowing towards 50, they've gone off the chart. Bob makes an excellent point, try not to worry about what the future CH holds for you, concentrate on an effective regimen to manage them.

Glad you found us, sure hope we can help you!

Guiseppi

Used to be they got so bad that I would honestly forget that EVERY SINGLE ATTACK COMES TO AN END.

Then I remembered, and that's when I started living again.

Unless I am mis-understanding what you said here:


Quote:

Started a new seried of Ch about 10 days ago, seems to be converting from episodal to chronic.

 
 
10 days does NOT mean you're going chronic.  

Chronic is defined as one year without a pain-free break of 30 days or more.

Hi Kkenny,

I hear and feel your concerns. What has helped me tremendously while in cycle, was coming here inbetween hits, asking questions and talking to the great people here. I know it sounds corny and cheezy, but this IS indeed a family. We care for eachother. Trust me, coming here will drag you through it.

Don't be a stranger!

Regards, Pascal.

[quote author=7B6B7C6E7A6B7C6E190 link=1219165002/0#5 date=1219167166]Chronic is defined as one year without a pain-free break of 30 days or more.[/quote
a QUESTION....................................if i have been in a cycle for 8 mths, and meds are keeping it "at bay", with hits in betwen, and if i attempt to go off meds, it comes back witha vegenance, am i leaning towards chronic?????????????.........mind you, i am living my life and not concentrating on CH..........................tho it is puzzzling!
deb

sorry, dont know how to do these quotes!!!!!!!!!!!

I'd never had a cycle go much past 3 months, then my last cycle went 8! I was trying to ignore the thought but I was scared sh*&less I was going chronic. Every time I'd start to wean off the lithium, WAM!! I didn't go chronic, the danged cycle finally ended. But if it hadn't, I'd have dealt with it, it's what we do! Hoping month 8 proves the magic stop for you!

Guiseppi

Kkenney,

You can give Kudzu a try, it does not alter mood.  I know it doesn't work for everyone but I have been fortunate that after 2 days on it I usually just experience shadows until cycle is over.  If one does break through I can usually abort in 5-10 minutes with cold rags/cold water splashed in face.  If it goes full blown then the hit will last about maybe 20 minutes at no more than Kip 8.  Normally my full blown CH's are no less than 45 minutes.

The only presicribed Meds I have ever taken in 18 years is when I was first diagnosed in 1990 and Dr. gave me Vicadin which only made things worse.  Which it is known now that is in the family of medicines that is worse for CH.  Somewhere around 1998 my Neuro put me on Verap and Pred which worked great but then I noticed I went into another cycle a few months after that ( usually my remission is 1 1/2 to 2 years) and they came with a vengance.

I would never (well I should prolly say never) take Verap/Pred again and that is a very common prescription for CH's with no mood altering effects that I know of.  I have read on these boards of hundreds different cocktails and some are very scary to say the least.  I had been fortunate that I had never reached at great length for meds and Kudzu has helped in my last cycle that was 2 years ago and it is getting me through my current one with good results.

I am taking very small doses of it compared to what was common on these boards but I started small because I hate taking anything.  I currently take 150 Mg of Solaray brand Kudzu that contains 2% Daidzin.  I take one at 8 a.m. and one at 8 p.m.  I hate having my hopes up too much on what is working for me but it has been a godsend.  I am so afraid that someday it may quit doing its magic but if it does I will be prepared to survive.

Wishing you and all PF days!