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Longtime Lurker Finally Registered. Hello All (Read 861 times)
ClusterMike80
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Longtime Lurker Finally Registered. Hello All
May 24th, 2013 at 6:55pm
 
Hi Everyone

I'm Michael. I am 33 and have had CH since I am 19. I was lucky enough to have 8 blissfully pain free years up until the last three Sad
I would like to thank everyone who posts on here as it has been a real help to me when almost nothing else does.  I am also thankful that despite as bad as I feel there are others out there who can understand my pain when my family and friends often do not.
I am currently in the 5th week of my cycle.  2nd round of steroids.  Up to 175mgs of topamax   Daily.   On a D3 regimen. Beast is certainly less intense but still popping up 6 times a day.  Of course every few days a screamer/pacer makes its way through. Thankfully for the most part Fairly controllable with fioricet and caffeine.   Triptans just knock me out so they haven't been helpful. This this past month is mostly a blur....thankfully I have a good job which is secure as I have probably missed almost 2 weeks of work between pain and neuro visits.
My CH occurs only during the day which makes is somewhat atypical, fairly constant Hortons syndrome when not on high dose prednisone....
So tired of being exhausted and foggy.  I want my brain back!
Considering cluster busting again. It simultaneously with prednisone has helped break the cycle in the past.  Any. suggestions support is much appreciated.   

Thank You!
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Guiseppi
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Re: Longtime Lurker Finally Registered. Hello All
Reply #1 - May 24th, 2013 at 9:16pm
 
Welcome to the board, glad you stuck your head in. Consider jacking up the D-3 loading dosage, some have had to go to 15000 IU a day to get their D-3 levels high enough to stop the beasty. Also consider asking your doc about verapamil, people report less of the mental side affects from it:

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).

=======================================
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

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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ClusterMike80
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Re: Longtime Lurker Finally Registered. Hello All
Reply #2 - May 24th, 2013 at 10:36pm
 
Thanks for the reply Joe,

I have discussed Verapimil with my Neurologist as it does seem to be the preventative of choice.  However my BP tends to already run low and he is not comfortable prescribing it.  I have finally adjusted to the cognitive side effects of the Topamax.  I will hit the 200mg dose this weekend. (  I am a big guy 200lbs, well I used to be. Have lost quite a bit of weight this cycle Sad.  I hope this dosage will keep the beast at bay. Or that the current prednisone taper will end the cycle.  Aside from the beast itself the right side facial pressure neck tension and in between CH headache fog is wearing me out. 
I will try the 15000 D3.  I am already taking 10000. I like most of us will try anything.

Thanks again!
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CHsRtheDeviL
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Re: Longtime Lurker Finally Registered. Hello All
Reply #3 - May 25th, 2013 at 2:56am
 
Your CH story sounds the same as mine I got them when I was 14 but they went away and I didn't think anything of it. Then right before I turned 19 they started up hard.  I can't really remember when but I'm 27 now and I think I've had 1 painfree summer since then.  I'm hoping for a 6 year hiatus of these crappy things like you had going.  I'm on 400mg of verapamil a day first time I've been on a dose this high and I must say its working extremely well, fingers crossed.  Anyways, whats goin on welcome to the board and hopefully you'll be out of the cycle soon and enjoy another 6 years PF.
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