Hello all

I am deep into my second CH cycle. 8th week, or is it the 9th? I do not know. I have completely lost track. Currently taking Depakote 500mg, and am on the D3 regiment. 02 and sugar free redbull when an attack occurs. How long has your longest cycle lasted?

I feel as the attacks, (thanks to the D3) when they do break through do not last as long as last years episode, but they way I feel all day; lose of memory, confusion, dizziness it's driving me crazy! Due to the meds or the CH's??

On a medical leave from work but I feel bad as my boss is having to do so much work on my behalf, when he could just replace me with someone more...reliable I suppose. I know the right/moral thing to do in this situation is to step down. Everyone tells me not to do this and wait until they let me go. However,  I do not believe this is the right thing to do, my employers have always treated me wonderful and I do not want to affect them negative in anyway..

Sorry for the rambling

Please any advice would be much appreciative.

The side effects you describe sound like it may be the Depakote at work.....consider talking to your doc about Verapamil:

A widely used protocol. Your doc will recognize the source and author:

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).

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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


As to length...my longest was 8 months...been free of CH for 4 years since the D-3 regimen took over.

Joe

Thanks guys. Hope you get to enjoy that red soon Mrs JX! I have a bottle of Absinth waiting with my name on it  :)

I was initially prescribed Verapamil and was taking it for a couple weeks or so, then the dosage was increased. Well, that had some serious effects on my heart rate. So the nuero switched me to this Depokate.

Joe, 8 months oh my! Oh that must've been quite the ordeal my friend. My biggest fear at the moment is becoming chronic CH...Congrats on your pain free! God willing may many more find relief.

Ouch...yeah heart issues make the verapamil not so perfect for some. :( Hoping the D-3 kicks in for ya....CH sucks.

Joe

My longest was just under 11 months long, which nearly qualified me for the chronic label. However that was interupted by the D3 approach.

6 months for me.  Try not to fear becoming chronic if it happens you'll deal with it then.  Or fear it if you want but know that it won't take away tomorrow's troubles but it will take away your peace today.

There's different times I've gone 12-18 months without a break but never considered myself chronic as they've always been individual cycles, back to back.

Fair dinkum I wouldn't wish it on a politician.

As to the job, be thankful you work with such understanding people. You'll be better in no time and can pay them back properly for their courtesy and care.

My longest was 9 months. It happened about 3 years ago. I would get clobbered with six to eight hits a day. About half if them would be a 7 or greater. During this cycle, for the last 3 months, every hit was a 10(very suicidal). This cycle is what make me find this community. Not having insurance left me with only household pain relievers( of course did not work). Now, I use D3 and cold water and cold compresses. I will begin my path towards O2 since I now have insurance.

Suggest you consider using one of the more potent abortives when you are having an attack. O2 has a short time of action, even though effective for many.

Print the PDF file, below, and use it to discuss options with your doc.
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Length of a cycle is of recurring interest here but of little medical importance. In my entire "cluster" life, never had a cycle: attacks were random events.

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About 8 0r 9 weeks for me, but I had one ch attack that lasted 16 hours. That nearly killed me!

Mine came every Spring and Fall, like clockwork, and
lasted the full 12 weeks with 2 hits per day same time
AM/PM.

Cheers, Hoppy.