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Need suggestions... (Read 2384 times)
Glassman
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Need suggestions...
Feb 10th, 2011 at 7:55am
 
I want to thank everyone for all their help and suggestions so far. 

I've reached the end of the Prednisone taper my regular D.O. and I thought might work. It did work and I was pain free for 5 wonderful days. But this morning the CH was there lurking, though it came on very slowly. I decided to hit it with the Imitrex.  I was hoping the Prednisone would see me through to the end of the cycle and I'd be fine at the end of the dose.
 
I'm going to get with my acupuncture D.O. who prescribed the O2 for a higher flow rate. 

I've still been following Batch's supplement suggestions which is why I think that before the Prednisone they became fewer and slower to hit.

But what else?  Suggestions please!
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Brew
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Re: Need suggestions...
Reply #1 - Feb 10th, 2011 at 8:00am
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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Kevin_M
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Re: Need suggestions...
Reply #2 - Feb 10th, 2011 at 8:46am
 
Glassman wrote on Feb 10th, 2011 at 7:55am:
I've reached the end of the Prednisone taper

I was pain free for 5 wonderful days. But this morning the CH was there lurking, though it came on very slowly.

I was hoping the Prednisone would see me through to the end of the cycle and I'd be fine at the end of the dose.


Unless an episode is very short, the span of relief prednisone allows may be used for time to work in a preventative, otherwise, it can be predictable the hits will return.  I took a 20 day pred taper while verapamil was slowly increased.  When the pred ended, the verapamil helped.
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Guiseppi
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Re: Need suggestions...
Reply #3 - Feb 10th, 2011 at 8:50am
 
I'm with Kevin, if it seems the cycle is sticking around, probably time to look into a prevent med. Verapamil, Lithium etc., to cut down number of attacks. And do follow thru on the 02. Even if you don't use it this cycle, you've paved the road so when the next cycle starts, you're ready to go.

Joe
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Glassman
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Re: Need suggestions...
Reply #4 - Feb 10th, 2011 at 10:38am
 
Ok, thanks guys.  I've called both Docs telling them about your suggestions and am anxiously awaiting positive answers. 
Anyone else wanting to chime in I'd appreciate it!
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Re: Need suggestions...
Reply #5 - Feb 10th, 2011 at 10:42am
 
Quote:
I've called both Docs telling them about your suggestions and am anxiously awaiting positive answers.

Something tells me you won't get any positive answers about my suggestion.... Wink
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ChefChris
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Re: Need suggestions...
Reply #6 - Feb 10th, 2011 at 11:41am
 
heres some positive feedback....BUSTING WORKS!!!  Smiley
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Linda_Howell
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Re: Need suggestions...
Reply #7 - Feb 10th, 2011 at 11:49am
 
Quote:
I've called both Docs telling them about your suggestions and am anxiously awaiting positive answers.


My doctor once asked me if I have heard of any new treatments for CH.  I told him about busting and before I could get it all out....he stopped me mid-sentence and said he didn't want to hear anymore. 

Mind you...my doctor was a gem and he allowed me to recommend anything in my treatment that might help.  He even went so far to say, "Linda you know more about this condition than I do"   BUT..until this is legalized, you aren't going to find a physician who will approve.   Best to just not say anything to them.

oxygen with a high-flow regulator is going to be your best bet to abort and like theothers have said, Verapamil or Lithium to prevent.
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Jeannie
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Re: Need suggestions...
Reply #8 - Feb 10th, 2011 at 12:08pm
 
At my last visit, I was asking my Dr. if he was familiar with OUCH.   He said that he was and also with Custerbusters.... WOW!!!!  I was shocked. 

We'll see what he says at my next visit when  I tell him I have given up the traditional route of treating my CH....  I'll keep you posted!


Jeannie
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Bob Johnson
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Re: Need suggestions...
Reply #9 - Feb 10th, 2011 at 12:21pm
 
Print this for your doc. It's a widely used protocol in the U.S.
======
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.

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Bob Johnson
 
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