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New member from France (Read 2361 times)
Mado
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New member from France
Nov 19th, 2010 at 4:27am
 
Hi everybody,

I just registered and am hoping to find more information on CH. My husband is the one suffering from that sh.. but I am the one surfing. I am already a member of a French forum and arrived on yours while searching info on kudzu and thought that couldn't be bad to have the most info I can handle (I think I have a lot of reading to do soon).
My husband cannot find a treatment that suits him, he is on Isoptine (verapamyl), the 120 version (sorry, I am not too familiar with the american drugs) and Laroxyl (amitryptilin) but it has no effect.
The teralith (lithium) seems to work a little bit but then the doctor (a French specialist of CH) changed it. Since then he is in great pain and is waiting for the next corticoid infiltration.
so hopefully it will work and the neurologist will put him back on lithium.

I just heard about kudzu and will investigate further on.

Thanks for your forum. And I am so glad I am in good health. I didn't know about CH before my husband got hit with it. That's such a crap.

Madeleine

ps: Sorry I haven't read yet the forum policy so excuse my bad words, we are a bit more loose on that in Europe. I hope it's OK.
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Madeleine
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Re: New member from France
Reply #1 - Nov 19th, 2010 at 5:40am
 
Mado wrote on Nov 19th, 2010 at 4:27am:
My husband cannot find a treatment that suits him, he is on Isoptine (verapamyl), the 120 version (sorry, I am not too familiar with the american drugs) and Laroxyl (amitryptilin) but it has no effect.


Hi Madeleine, thanks for checking in for him. 

As a preventive medicine for clusters, 120mg of verapamil per day wouldn't be effective for most everyone during a cycle.  It could only be a start toward incrementally raising the dosage to 360 and 480mg a day to see if it helps prevent.  Higher doses can be necessary during certain parts of cycles to handle more activity breaking through.  I might see why it hasn't been helping, inquiring with his doctor to raise the dosage could be worthwhile, as well as attaining an abortive means.  Oxygen works well for that.


Welcome           Smiley
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Re: New member from France
Reply #2 - Nov 19th, 2010 at 6:15am
 
Agree; the Verapamil dose is quite low. Print out this treatment approach which is widely used 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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Mado
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Re: New member from France
Reply #3 - Nov 19th, 2010 at 8:11am
 
Thanks for your replies. Sorry I haven't been specific enough about my husband's treatment and condition.
First of all, he is chronic. It started in 2007 and he has been diagnosed late 2008, early 2009, don't remember exactly. He is on Verapamyl 120 as opposed to Verapamyl 240 which is not effective at all for him. But he's taking 4 of them per day, and dosage cannot be increased, due to his heartbeat rate I would say.  Also, he is using the short acting verapamyl, more effective, just as you said.
He had different treatments, some of them were effective 3-4 weeks, and then everything was back "to normal". I told him to write down the time the strikes would occur, but he has some difficulties doing so.

I have a lot of reading to do. Maybe I will find some new directions, thanks to that forum.
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Madeleine
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Re: New member from France
Reply #4 - Nov 19th, 2010 at 8:42am
 
Welcome to the board, he's a lucky man to have found a supporter who will do the legwork for him!

OXYGEN, OXYGEN, OXYGEN!!! Please take a few m inutes and read the oxygen info link on the left. It has changed the lives of so many CH sufferers. I used to suffer from 90 minute attacks. Now, with oxygen, I am pain free in 6-8 minutes. It's cheap, effective, fast, please encourage him to give it a try!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Mado
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Re: New member from France
Reply #5 - Nov 19th, 2010 at 8:53am
 
Hi,

He used oxygen last week while he was in hospital, and sometimes it worked sometimes not. He had what we call in French "rebond", meaning the pain stopped and was back the next hour. Plus he has a lot of strikes during the day and might not be at home when hit. But I know, I told him to get some for home. and he already has the prescription.

Thanks all for your help and advise.
On nov. 30th he will have another infiltration, so we'll see  Undecided
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Madeleine
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Re: New member from France
Reply #6 - Nov 19th, 2010 at 9:01am
 
Great that they offered him oxygen at the hospital, the key to 02 is using it correctly. Often in a hospital setting, they use the nasal canulas, or re breather masks. Neither will effectively halt an attack. You need a Non Re Breather Mask, and a high flow regulator, at least 15 LPM, preferably up to 25 LPM.

I have found that drinking a Red Bull, an energy drink that combines caffeine and taurine, will delay that "come backer" attack.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Mado
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Re: New member from France
Reply #7 - Nov 19th, 2010 at 11:07am
 
In hospital he had a mask, I don't know what kind. He was there for his CH so I hope they knew what they were doing. Anyway, each time he went to the ER (before he tried Imitrex) the nurse or doctor, who ever was there, would put him on O2.
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Madeleine
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Re: New member from France
Reply #8 - Nov 19th, 2010 at 11:25am
 
Madeleine, welcome to the board.
sh.. and crap are not bad words here. Just part of normal conversation.
We visited your country last year. Loved the trains under Paris. Got lost 7 times in one day.  
And, we met a guy named Richard. Do know him?  Please keep us posted on how your husband is doing.

just kidding about Richard.
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Mado
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Re: New member from France
Reply #9 - Nov 19th, 2010 at 12:49pm
 
Thanks Bob. Getting lost in Paris is part of the fun, unless you end up in dodgy areas, but there are not that many of them.
Paris is great when visiting, but I am tired of living there, specially with a kid. We moved out 2 years ago, might have to go back as work is not that good now.
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Madeleine
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Re: New member from France
Reply #10 - Dec 2nd, 2010 at 5:10pm
 
I used oxygen pretty successfully for a few years. Then one year I got the "rebound" pattern. The first headache at 11:30 pm responded to O2, the second came at 1 am and took more O2 to go away, and at 2:30 am here came another, at 4 am another, at 5:30 am. After the 3rd O2 did not help, so I started using the imitrex around midnight to try to get through the night. About then I found my current neuro. Got me on 80 mg Verapamil twice a day. Au revoir CH! I start the verapmil routine whenever episode begins. Within 3-5 days the CHs disappear but I continue to take Verapamil for 3-4 weeks more and get off. Hopefully a higher dose of verapamil will work for your husband.
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Re: New member from France
Reply #11 - Dec 2nd, 2010 at 6:18pm
 
Hey Madeline,

Just wanted to jump in and say hello and welcome.  Visited Paris in my teens, beautiful place  Wink  Good on you for researching on behalf of your hubbie.  Keep reading and no doubt you will find something that will help eg. energy drinks, melatonin for night time hits... and so on.

Thanks for being such a great supporter.  Fantastic that the emergency crew knew to get him on to oxygen!!  Be great if you could get a set up at home.  Have read on here with reference to rebound headaches that it can help if you stay on the 02 for a good 10 mins after the headache has gone.

Wishin you all the best,

Kate
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Re: New member from France
Reply #12 - Dec 2nd, 2010 at 9:04pm
 
Welcome Madeline and thank you for being such a good supporter for your Hubby!

Since his verapamil can't be upped in dosage according to the doc he may benefit from a verapamil lithium combination there are a few here that are on it, check with his doc on this.

Make sure you both check with your doc before adding any additional over the counter treatments such as Kudzu.
Quote:
  • There are potential interactions with Kudzu and Verapamil, since they have a similar action. If your blood pressure is normally low, you should probably not add kudzu if already taking Verapamil. There are potential interactions with triptans, however no one who has used both has reported any adverse effects.
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Mado
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Re: New member from France
Reply #13 - Dec 3rd, 2010 at 3:10am
 
Hi,

thanks all for your welcoming words. Here is an update.
My husband was very down those days because he had 6/7 hits a day. Luckily on last Tuesday he had an injection of corticoïd in his neck. He had a previous injection 2 months ago, not really successful but I am not sure it was the same stuff. Anyway, on Tuesday he had 2 major crises but since then, nothing.
So maybe that's Christmas before we expected it Cheesy

some people in France are on lithium, it seems to work pretty well. My husband had it for a while, it worked a little but still had some crises from time to time.

and it's good to compare what's done between different countries. I don't have time right now to read much of the forum but I will come back later on. And if some of you can read French, here is the website of the French association Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

In French, "cluster headache" = "algie vasculaire de la face"

good luck to you all.

Madeleine
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Madeleine
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Re: New member from France
Reply #14 - Dec 3rd, 2010 at 7:15am
 
Lithium has been my preventative med of choice for many years now. Not a cure by any means, but reduces my hits by 60-70%.

Joe
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Re: New member from France
Reply #15 - Dec 3rd, 2010 at 8:30am
 
Hello, Madeline, from yet another CH sufferer/hopeful! You're getting gread advice, and you did indicate you would read this site when you have time. Just two things to note as you read: first, please notice how high our preventative levels tend to need to be as opposed to the label use of the med for the general population. In other words, verapamil, lithium, melatonin things like that are often effective only at much higher levels. Second, don't assume the docs here or there know all they need or ought to know about chs. It's great they are using O2, but we have found so many are either not using it correctly (breathing patterns) or at a high enough flow rate (med community tends to break off at 15lpm and that's where we start, and can go as high as 60lpm) or have the wrong equipment (we need a non-rebreather mask that prevents introduction of adulterated room air). So please add these caveats to your growing list of what may or may not be effective. And keep that "hit" diary for him if he can't do it himself. It may help you identify triggers. Good luck, God bless! lance
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