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Question from new guy (Read 3428 times)
Bobbyd
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Question from new guy
Aug 13th, 2013 at 8:35pm
 
Have had CH for about  years.  This cycle is the first time I used Verapamil.  For those of you that use it are the CH completely gone?Verapamil has dulled them for sure but still will get an 8 or 9 every 5 days so.  Much better than pre-verapamil but it sounds like some members are PF for years with this or other plans.  I guess my question is should I try another daily option and hope for better results? Undecided
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Guiseppi
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Re: Question from new guy
Reply #1 - Aug 13th, 2013 at 11:43pm
 
Yes, no, maybe! Grin Grin The toughest part about CH is it seems no two people respond the same way to many meds. A substantial reduction in the number and intensity of hits is a big win for prevents. I use lithium as my prevent, it was blocking about 60-70% of the hits at 1200 mg a day. I considered that a big win. Curious what your dose is as some go as high as 960 mg a day to get relief, some have to combine the verapamil with Lithium to get relief. Have you had a chance to read up on the D-3 regimen?

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days



That's why I listed my prevent in the past tense, for 3.5 years I haven't been visited by beasty.

Joe
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Bobbyd
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Re: Question from new guy
Reply #2 - Aug 14th, 2013 at 7:08am
 
Thanks for getting back to me Joe.  I am one month 120mg ER 3X daily.  It is a step in the right direction for sure.  This cycle is so long for me.  I had a 9 in the office last week and scared the hell out of my friends.  I paced the lower garage for 1.5 hours.
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Bob Johnson
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Re: Question from new guy
Reply #3 - Aug 14th, 2013 at 8:09am
 
See the PDF file, below.
==================
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.
========
Need to be aware but a problem which easy to catch and control. But print both preceding and this piece for your doc.
--
J Headache Pain. 2011 Apr;12(2):173-6. Epub 2011 Jan 22.
Cardiac safety in cluster headache patients using the very high dose of verapamil (=720 mg/day).
Lanteri-Minet M, Silhol F, Piano V, Donnet A.
SourceDépartement d'Evaluation et traitement de la Douleur Médecine palliative, Pôle Neurosciences Cliniques du CHU de Nice, Hôpital Pasteur Avenue de la Voie Romaine, 06002 Nice Cedex, France. lanteri-minet.m@chu-nice.fr

Abstract
Use of high doses of verapamil in preventive treatment of cluster headache (CH) is limited by cardiac toxicity. We systematically assess the cardiac safety of the very high dose of verapamil (verapamil VHD) in CH patients. Our work was a study performed in two French headache centers (Marseilles-Nice) from 12/2005 to 12/2008. CH patients treated with verapamil VHD (=720 mg) were considered with a systematic electrocardiogram (EKG) monitoring. Among 200 CH patients, 29 (14.8%) used verapamil VHD (877±227 mg/day). Incidence of EKG changes was 38% (11/29). Seven (24%) patients presented bradycardia considered as nonserious adverse event (NSAE) and four (14%) patients presented arrhythmia (heart block) considered as serious adverse event (SAE). Patients with EKG changes (1,003±295 mg/day) were taking higher doses than those without EKG changes (800±143 mg/day), but doses were similar in patients with SAE (990±316 mg/day) and those with NSAE (1,011±309 mg/day). Around three-quarters (8/11) of patients presented a delayed-onset cardiac adverse event (delay =2 years). Our work confirms the need for systematic EKG monitoring in CH patients treated with verapamil. Such cardiac safety assessment must be continued even for patients using VHD without any adverse event for a long time.

PMID:21258839[PubMed]

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Bobbyd
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Re: Question from new guy
Reply #4 - Aug 14th, 2013 at 10:20am
 
Thanks for the info.  It is very much appreciated.  This cycle is really affecting my family and work.  Very scared.

I have never had a cycle longer than 1 month.  In the 3rd month now and thanks to all the info here I feel a lot better.

Hoping you guys have a PF day.


Bobby
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Re: Question from new guy
Reply #5 - Aug 14th, 2013 at 12:09pm
 
Short cycles or not, do you have any abortives? O2? Energy drinks? Imitrex? Migranal? All of these can very quickly eliminate an attack and the only two you can't use in combination with each other are Imitrex and Migranal. And just as an aside, 360mg/day is still quite low. Most of us get relief starting around 480mg. I take 640mg/day. Blessings. lance
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Bobbyd
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Re: Question from new guy
Reply #6 - Aug 14th, 2013 at 12:45pm
 
Thanks for the info Lance.  This is all new ground for me.  Previous cycles I had maybe 4 or 5 horrific days with only Zomig.  Which only works at the earliest onset.  But works.

I have Zomig 5mg spray and O2 (and the Verap).  Sad but true I have not been using the O2 correct based on info I got from you folks.  I need to try it again, the right way!

Neuro has no idea but he is cool and is open to all my ideas.
I really to try the O2 the right at the right flow.  I will ask Doc to increase Verap and see what happens.

This is first cycle with anything but Zomig and I used to simply dance all night, but as mentioned it was usually horrific for only a week at the peak.  I am into 3 months and being tortured.  They are all over the place, still the worst when awaken!  Thanks so much for listening and helping.  Could not thank you folks enough.

I am starting to feel I am getting the right info to help myself.  Thanks Lance.
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Guiseppi
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Re: Question from new guy
Reply #7 - Aug 14th, 2013 at 2:11pm
 
In that case Lance, I'll give you the long play version!!!

You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach.

I'll skip the D-3 cuz I already posted that.....

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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Bobbyd
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Re: Question from new guy
Reply #8 - Aug 14th, 2013 at 7:52pm
 
Thanks Joe, I am going to try the Red Bull and I need a new O2 mask Embarrassed .

I am going to see if Neuro will increase Verap, but I do not expect a problem.

I will give the D3 a shot this weekend.  Wish me luck.

Thanks again and best of luck on a PF night to all.

Bobby
Exhausted and hurting but hopeful Undecided
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Marc
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Re: Question from new guy
Reply #9 - Aug 14th, 2013 at 8:12pm
 
Bobby, it is important to remember that some of the things suggested take time to kick in.

Some things can be a problem when used in excess (even water) so keep reading, then read some more - so that you can become better armed to help your Doc manage your condition.
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« Last Edit: Aug 14th, 2013 at 8:13pm by Marc »  
 
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Bobbyd
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Re: Question from new guy
Reply #10 - Aug 15th, 2013 at 7:47am
 
Thanks Marc.  I am in such a bad spot that I am will to try anything.  I will for sure work with Doc.  I am trying to not lose my mind.  I had Chocolate milk on Friday AM and had a 9 in the afternoon, now I gave up milk.  Although I am fairly certain there is no connection to food.  Would not even think about alcohol.  Thanks for all the info and support.

Any other folks have triggers besides alcohol?

Bobby
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Re: Question from new guy
Reply #11 - Aug 15th, 2013 at 9:32am
 
Don't be afraid to ramp up!  360 mg per day wouldn't touch my CH -- I need 720 to 840.  No side effects at all except constipation (sorry to be so personal), which I can live with.  I made the mistake of dropping from 600 to 480 three days ago, and have had two horrific monsters in two days (spent last night in ER).  Back up I go!  Let your doc know, though, because your prescriptions end up being huge and not all pharmacies carry that much Verapamil.  (I am getting 240 120-mg tablets per refill, and my pharmacy always needs two days to get them in.)  Good luck -- Verapamil has been a lifesaver for me, and I hope it works for you!
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Bobbyd
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Re: Question from new guy
Reply #12 - Aug 15th, 2013 at 10:06am
 
Thanks Cynde

This is my first go round with meds.  I will get an increase.  My Doc had no idea what was what.  We ended up with two scrips.  1 for Extended release (ER) and another for Immediate release.(IR)  I went to IR at refill without knowing and was on the floor in pain in less than 24 hours.
The ER is better for me without question.  This is an enormous learning proces for me.  All of the kind people here have helped me a bunch!  I think my Neuro thought 360mg was a lot.  Now I know.  I have had CH's for ten years but never used meds besides a triptan spray.  I am getting great info here!  Thank god.  This curse is so lonely and horribly depressing.  This is the first cycle that is going longer than a month.  Very scared. Sad  Yes the constipation is horrific.  No worries about personal.

Thanks for the info and support so very much!
Bobby
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Re: Question from new guy
Reply #13 - Aug 15th, 2013 at 5:34pm
 
Bobbyd wrote on Aug 15th, 2013 at 7:47am:
Any other folks have triggers besides alcohol?



Chocolate is a trigger for me, as is anything carbonated, MSG, the smell of aftershave & cigarette smoke.

-Ken
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Re: Question from new guy
Reply #14 - Aug 15th, 2013 at 5:38pm
 
14 years chronic, never found a trigger. Every time I thought I had found one, turned out not to be true.

Marc
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Re: Question from new guy
Reply #15 - Aug 15th, 2013 at 6:35pm
 

Bobby wrote,
Any other folks have triggers besides alcohol?

Processed foods are known triggers in some folk myself
included. Cheese, bacon, sausage, salami, chocolate, pizza,
ect.

Hoppy.

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Bobbyd
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Re: Question from new guy
Reply #16 - Aug 15th, 2013 at 6:51pm
 
Thanks for all the info folks, maybe there is something to the chocolate milk and the candy bars.  I thought I was losing it but will cut out the chocolate to see what happens.

I do smoke but have not noticed any issues yet although I am certain it could not be helping.  I am down 10 pounds in this 4 month cycle and only weigh about 150.  (5'8")

Thanks for all the info and sharing, it is so helpful!  Maybe I am not imagining things!

Can't thank you guys enough!

Bobby

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Re: Question from new guy
Reply #17 - Aug 15th, 2013 at 9:56pm
 
Good luck Bobby - glad you are getting some help. Its a tough road, but hopefully this site will give you some shortcuts.  Im on d3 and verapamil for now.  Hoping to cut out the verapamil and see if beasty returns.
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Re: Question from new guy
Reply #18 - Aug 15th, 2013 at 10:06pm
 
Thanks so much!

I have to do the D3 ASAP.  Good luck keeping him at bay!

Bobby
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