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Cluster Headache Help and Support >> Getting to Know Ya >> New member from France http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1290158875 Message started by Madeleine on Nov 19th, 2010 at 4:27am |
Title: New member from France Post by Madeleine on 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. |
Title: Re: New member from France Post by Kevin_M on Nov 19th, 2010 at 5:40am Mado wrote on Nov 19th, 2010 at 4:27am:
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 :) |
Title: Re: New member from France Post by Mado on 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. |
Title: Re: New member from France Post by Guiseppi on 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 |
Title: Re: New member from France Post by Mado on 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 :-/ |
Title: Re: New member from France Post by Guiseppi on 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 |
Title: Re: New member from France Post by Mado on 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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Title: Re: New member from France Post by BobG on 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. |
Title: Re: New member from France Post by Mado on 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. |
Title: Re: New member from France Post by maryo on 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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Title: Re: New member from France Post by Kate in Oz on 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 ;) 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 |
Title: Re: New member from France Post by Ginger S. on 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:
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Title: Re: New member from France Post by Guiseppi on 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 |
Title: Re: New member from France Post by wimsey1 on 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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