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Need to vent/ Topamax- Verapamil Combo (Read 2476 times)
dhames1428
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Thanks, I'll try Ibuprofen.
Hadn't thought of that


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Need to vent/ Topamax- Verapamil Combo
Feb 18th, 2010 at 4:34pm
 
Hello out there!  I've been reading this message board for years and have found it to be extremely helpful, but I've been pretty shy about posting.  I've been episodic for about 10 years now, and this cycle has been the worst by far.  It started at the beginning of January, and I started taking a Medrol dose pack and 100 mg of Topamax around the 20th, with very little relief.  My husband and I thought I was still having clusters because of my really stressful and VERY crappy job, so I resigned at the beginning of February (I hadn't worked there very long), and was pain-free for a few days.  Then things returned to normal... two attacks a night, most nights.  I called my neuro and he increased my dosage to 200 mg, but I'm still having the same amount of headaches.  I've had 19 headaches since the beginning of the cycle... thank goodness for the imitrex tip!  I feel like I'm losing my mind!  I'm certainly handling the Topamax better than I have before (last year when I was on it I was a constant weepy, depressed mess), but it's just not working.  My husband is working insane hours right now and I feel guilty for waking him up multiple times a night. People just weren't meant to go through this much pain.  I called my neuro again today and he's putting me on Verapamil in addition to the Topamax (I thought I was dizzy now!)  We'll see how it goes.  Has anyone done this before?  I'm hoping it won't be for too much longer.  I've never had a cycle last longer than two months.  Thanks for letting me vent.  It's good to know I'm not alone.
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bejeeber
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Re: Need to vent/ Topamax- Verapamil Combo
Reply #1 - Feb 18th, 2010 at 5:26pm
 
Hey Dhames,

Yes these episode (cycle) lengths can be moving targets, can't they? Heck this beast is just a dodgy demon in general. I bet you're nearing the end of this episode though! My experience over 30 years is that the episodes start getting a bit longer (especially after about the 10 year mark), outweighed by the welcome fact that the remission periods really start getting longer and longer.

"Thank goodness for the imitrex tip" is right!! That one has really saved me.

If you're waking your crazy shift working husband up at night, I wonder if you could pull off the approach I take, which is upon awakening, have a plan for immediately tip-toeing out of the room and softly closing the door behind in an attempt to not waken the wife, then deal with crisis management from there, including imitrex injection all set up and ready to go?

And hey we're not all blabbing about the oxygen info type newer method of using O2 for nuthin! You oughta try it if you haven't already. Cool

Sorry, I don't know jack about the Topomax/Verapamil combo, that is something I have no personal experience with.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Dallas Denny 62
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Semper Fi !!!!


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Re: Need to vent/ Topamax- Verapamil Combo
Reply #2 - Feb 18th, 2010 at 11:03pm
 
Hey Neighbor,

What bejeeber said on the O2 for sure if you haven't tried it!  Works wonders for me! 

Wishin for some PF time for you soon!

Dallas Denny

PS  Check your PM's for info I sent you about the Dallas Meet n Greet next month.
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« Last Edit: Feb 18th, 2010 at 11:05pm by Dallas Denny 62 »  

I am lost and have gone to find myself....if you should see me before I get back....please ask me to wait until I return!!
 
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Kevin_M
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Re: Need to vent/ Topamax- Verapamil Combo
Reply #3 - Feb 19th, 2010 at 12:20am
 
Verapamil will take time to work and depends on adjusting the dosage to what is needed by increments.  If it does help, it could be tailored in with a gradual decreasing of the topomax, which hasn't this time around.

Some have mentioned taking topomax before sleeping, but I haven't used it.  The oxygen abortive is a good addition for episodes. 

This might be a good opportunity to see if verapamil might help with any future episodes as well, and to what dosage could be effective.
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dhames1428
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Thanks, I'll try Ibuprofen.
Hadn't thought of that


Posts: 11
Plano, TX
Gender: female
Re: Need to vent/ Topamax- Verapamil Combo
Reply #4 - Feb 19th, 2010 at 2:54am
 
Thanks so much for the kind words and suggestions (and the invite!).  It is helpful to know that I might have more time between cycles eventually, especially considering the severity of this one compared to others.  I've been looking into oxygen and plan to get set up soon!  I hope it works for me.  I feel like a walking test tube these days with all the medication I'm putting into my body!  Thanks again!  Off to bed, hoping I'll sleep through the night.
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Bob Johnson
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Re: Need to vent/ Topamax- Verapamil Combo
Reply #5 - Feb 19th, 2010 at 9:03am
 
Introducing Verapamil will take a little time to adjust dosing. Suggest you print this two part msg and give to your doc.
========

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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Dollyhair
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Re: Need to vent/ Topamax- Verapamil Combo
Reply #6 - Mar 10th, 2010 at 5:47am
 
Here in England, when you are starting a Verapamil regime, you are supposed to have an ECG before and when you are upping the dose, not sure what it is for other countries

Caron
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