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HannahFroukje
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Hi I'm new too
« on: Nov 15th, 2003, 12:55am » |
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Hi folks,
Here's one supporter from the Netherlands. I'm searching the internet all over the world to find usefull information on clusterheadaches. My hubby's got it, I've been looking at the Kip scale on this site and unfortunately I should conclude he's got 6-8 "big one" (scale 9 or 10) each day. Now most of you will know that clusterheadache is a terror but it's a terror too to have to watch his pain and agony and not being able to do something or help out. When it starts again, I just turn down the lights, turn off the music, get him his water, get him his ice, endure his cursing (usually at my address), rub his back, and hand him his injector if he can't shake it off. That's all I can do and it was unbearable. His last cluster lasted 13 weeks, OHMYGOD, this was terrible!
Oh by the way: we tried EVERYTHING from eating ginger, the water treatment, oxygen (helps only a little) ... 
So after "suffering" through the whole ordeal 3 times I thought what the heck, I'm going to TRY and do something about it. So I started an education in alternative ways of treating people, homeopathy, herbs, Chinese treatment, stuff like that.
It hasn't gotten us so far that his headaches would go away, but we DID succeed in getting rid of them for just a few days in a row, which would give us sometimes 8, sometimes 12, and sometimes 3 DAYS of blessed piece of mind, UNDISTURBED SLEEP and cosy coffee hours ...  .
Then usually the headaches would gradually come back and I had to go out on the look again to find something new. As I type this, we just had 3 days of rest again (ow, what luxury  ), with only a single light attack during the last night, but tonight he had two (still mild) attacks, so I'm pretty sure in a day I will have to look for something else.
I checked into this site, because I would like to learn MORE about the disease, not only because I will be able to help my own hubby better, but also because I might be able to relief - perhaps only temporary but hey one night of sleep is yippee too - other CH-sufferers in the future when I have started my practise.
Sometimes hubby and I joke about this together and say: whenever I open my practise, CH-sufferers are:
* Always first
* Pay only half (because they're broke already)
* Probably come back every 3d day for new remedies
Now I would like to do my thesis on CH too (ofcourse). It would be a holistic view on CH. But I don't want to write something that is not thorougly documented.
So what I would like to know is:
* How many of you would be willing to fill in a form for me to allow me to document my thesis with background info? It would be about all sorts of secondary info: gender, if you're a smoker, but also about typical charasteristics, like the colour of your hair, likes and dislikes in food, such stuff. It would be quite a list, because I need a lot of detail to analyse it homeopathically!
* HOw many of you make a headache diary and who would like to share this with me?
* Does anyone know how I can get my hands on good CH research info????? There has been a big research going on in The Netherlands, but I can't find the report anywhere. Nor can I find research data in other countries.
I'm curious if this will get me somewhere, in The Netherlands where I live CH-sufferers are usually not so keen on alternative treatments.
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tsayswhy
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Re: Hi I'm new too
« Reply #1 on: Nov 15th, 2003, 1:14am » |
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Hello and welcome hannah
You will find so much info on cluster here just click on the left and start reading.
i would be willing to fill out the form.
HALF PRICE be carefull you may end up with us all down there when you open up 
wishing your husband pf
tari
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| « Last Edit: Nov 15th, 2003, 1:15am by tsayswhy » |
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Lori
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Re: Hi I'm new too
« Reply #2 on: Nov 15th, 2003, 1:28am » |
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Hope your husband gets relief soon from his pain. I don't know what it's like to watch (be on the other side) but I'm sure it's hard on you too. There is a supporters board here too that might be helpful for you. Wishing you both well and PF days!
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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Callico
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Re: Hi I'm new too
« Reply #3 on: Nov 15th, 2003, 1:41am » |
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Hi and welcome! As the others have said, there is a lot of information available here and on the OUCH board as well. Read,read,read, and then there will still be more available to read. You will find a lot of us have tried the alternative routes, most with little or no success. I don't know of anyone though who has cataloged the successes and failures, so your work could be very helpful. One other idiosynchrasy or CH is that it appears that no two of react the same way to it nor do we react alike to the treatments. What works for one will not do anything for another. I would be most willing to fill out your form when you have it finished. Drop me an e-mail and let me know what you need.
Have your husband get involved with us as well. there is a lot for him to be able to glean from the board, and it is always helpful to have another participating. The supporters corner would be very helpful to you as his supporter. God bless you for being there for him. I know a lot of times it is worse for my wife than for me trying to deal with my HA's.
Jerry
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BarbaraD
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Re: Hi I'm new too
« Reply #4 on: Nov 15th, 2003, 5:00am » |
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Welcome to Clusterville.... there's loads of information here - go to the left and click on and start reading.
I've tried most of the homapathic stuff and, like your hubby, got some relief - sometime and then it was off to something else.
Will be glad to fill out your form when you get it ready. There are several survey's already up here if you want to look through them....
Have you tried the water treatment? It seems to work for some and O2 works really well on a lot of people.
But we ARE all different and react differently to most things.
Lots of Hugs coming from Texas and hope you have some PF days soon.
Hugs BD
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tinyhuey
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Re: Hi I'm new too
« Reply #5 on: Nov 15th, 2003, 5:27am » |
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Welcome to CH, I was reading your message and was wondering. What does your hubby use the ice for? I have suffered for 16 yrs and I sure would fill out your form.My hubby is GREAT, I just wish he didn't have to see me in so much pain. But without caregivers ( as yourself) I'm not sure if we could endure.I get them like your hubby, mine lasts for days not just hours.   and Thank God for care givers.
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cathy
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Re: Hi I'm new too
« Reply #6 on: Nov 15th, 2003, 6:57am » |
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Hannah Welcome to the board, there is also a great supporters board go check it out....wishing your Hubby PF times...good luck with the Homeopathy practice...
Cathy
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HannahFroukje
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Still going well
« Reply #7 on: Nov 15th, 2003, 9:05am » |
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Hi back all
Thanks for replying to my post. It seems that some of you would not mind to fill in a questionaire, I would be MOST GRATEFULL if you would, but I warn you in advance, it would be a LOT of questions.
First I will have to WRITE the questionaire though and discuss it with my mentor at school; I'm sure it would not be sufficient to just "throw a couple 'a questions together" and call it a questionaire or a survey. So it will take some time before I have it finished. When I made it, I will report back with it and send it by email. But I'm so happy that people are willing to do this! It will allow me to investigate and research this subject thoroughly and perhaps find some conclusions and keys to natural treatment. Because some of you will know, that relief is usually only temporary and it doesn't bring very much (and costs a lot of money too). Therefore, more knowledge of natural treatment is necassary , I'm convinced it is possible for some sufferers to treat it or relief it (perhaps only a few), but it's very personal and very difficult.
I will surely check out the surveys on this site, but theres so much info I hardly know where to start . I have been reading all I could get my hands on if it's about clusterheadache, but this is the first time I hit this site. Yes we have tried the water treatment, he's still on it, though it doesn't help one bit. Yes, we have tried oxygen. Yes, taking peppers too, or ginger, or other stuff, did not try mushrooms or pot. Imigran (I think that would be the same as imitrex) helps, but .... the worries to get them !!!!!!! I have almost KILLED pharmacy assistens because they just refused me the imigran even if I had a doctor's recipee for 8 , they sometimes will give me only 2 and say "come back monday after I've discussed it with your doctor" ... and you are facing a weekend full of attacks , needing about 18 injections and you have only 2  ... how am I to prevent him from jumping out of the window? He really gets insane with the pain, he tears the place down! The dutch imigran is impossible to open so you can use a third. He would consider the hospital but not anymore, he's been taken there twice and both times he ended up with a MEDICINE-POISENING, it almost killed him!
By now they know me at the pharmacy ..... HAAH!!! And they KNOW now that they should not mess with me and discuss these medicines because I will go to WAR to get them for him.
By the way ... we're still going well over here! Since we started the homopathy again, with some new remedies, he has had 3 attacks in total, and only mild ones. And that's over about 3 days! So not bad at all, normally it would be about 18 at least, and big number 10's among those too. I'm trying to keep my hopes up that this time I will be able to break through it and end the cluster, it's looking good for now, and he's feeling very well, but hey, you never know.
Keep your fingers crossed for us. And good luck to all of you who are suffering these terrible pains. I hope one day I will be able to help some of you, I would surely hope so, because no one should endure pains like this!
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The mad viking
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Re: Hi I'm new too
« Reply #8 on: Nov 15th, 2003, 9:10am » |
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Welcome to Clusterville.... there's loads of information here
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Always Look on The Bright Side of Life
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Giovanni
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Re: Hi I'm new too
« Reply #9 on: Nov 15th, 2003, 9:49am » |
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I really do not understand why your pharmacy does not complete the doctor's RX for imitrex in the quantity you need. Does not work that way in the U.S. Try another pharmacy? As far as pot goes, it is the believe here that pot will trigger a CH as does alcohol.
Anyway, you might want to try Melatonin.....really cheap @9mg one hour before bedtime. It has help some people here (like me); not helped others, marginal help for some. See the recent post on Melatonin on this board.
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ave
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Re: Hi I'm new too
« Reply #10 on: Nov 15th, 2003, 10:26am » |
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Beste Hannah, dear hannah
I am a sufferer from the Netherlands as well.
Could you tell us what sort of school you are attending and what the degree is that you are studying for?
I would like to know what I am doing the work for...
There is a general feeling here that body particulars
(hair colour, skin texture etc.) have nothing to do with getting clusters. Also, that smoking, what most clusterheads do, has nothing to do with causing clusters.
Contrary to migraines most triggers (apart from alcohol, which is NOT universal) are very personal, e.g. smells of perfume or manure, MSG (ve-tsin) liquorice etc., hard excercise, heat, cold...
I know of people in the Netherlands who have tried the imitrex tip (pushing the plunger 1/3 of the way with a Q-tip - wattenstokje). Do try again.
Lastly, being in the Netherlands you may be doubly lucky, for check this out www.clusterbusters.com
Shroms may be had at smart shops just aropund the corner.
I have used the shroom method and it helped me a lot.
good luck
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HannahFroukje
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some answers
« Reply #11 on: Nov 15th, 2003, 10:52am » |
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Firstly I forgot to answer the question about the ice: my husband uses ice to put on his head, eye and nose to sooth the pain just a little bit. It does not abort the attack.
I told him about the melatonine possibility, BUT Ive heard bad stories about it too. Anyone here?
Then about the questionaire. The only purpose of the questionaire would be: INFO!!! I am not trying to generalise, or to find THE solution to cluster headaches. The reason why I would ask about things like colour of your hair, smoking, alcohol or other things would not be to pinpoint THE type of person that would get cluster headache, but to find more about the homeopathic picture that would match this particular person or group of persons. It would give me a chance to find similarities in perhaps a couple of person, and there is a possiblity it would lead me to a remedy that might help someone.
The school I am attending is a private school, which tries to combine regular knowledge to alternative ways of treating. So we study a lot of anatomy, physiology, pathology and such, and besides that we learn to treat the chronically ill with herbs, homeopathic remedies and orthomoleculars.
I am NOT stating that I think I-can-help-cluster-patients, but I think some more research on this area will not harm anyone. The school I attend is cooperating with Dr. Ferrari in Leiden, Dr. Ferrari is looking at the regular picture, we are looking at the alternative picture.
Therefore I hope there are people who are willing to fill out the questionaires. There's nothing in it for those who do, perhaps only the thought that you might have helped a single person, by leading me to the remedy that might relief someone in the future, if only for a day  .
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Prense
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Re: Hi I'm new too
« Reply #12 on: Nov 15th, 2003, 11:06am » |
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I don't care if you're studying political science, I'll fill it out! 
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drnoe
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Hi Hannah and welcome,
Y'know, we were just talking about the need for another survey. You're just in time.
Nice to meet you and I look forward to getting to know you and your husband.
ciao
Dan
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HannahFroukje
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just to give an example
« Reply #14 on: Nov 15th, 2003, 11:53am » |
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It's hard to explain why I would like you to fill out so many questions, and it's even harder to describe the how and why of homeopathy, so JUST to give you an example ....
I had been reading all the books I own about homeopathy, I've even spent nights, staying up reading(couldn't sleep anyway with that rackass going on in my living room  ). I had tried some remedies on Jos, my hubby, with very little effect.
Then we had a lesson at school about pharmacy. We had to study some medicines that help for migraines, so ofcourse I opened the CH/section too, and read about the medicines that are given. I read that sometimes calcium channel blockers are prescribed and it helps SOME CH-sufferers. The next time at school, we had homeopathy, and we had to study some homeopathic remedies. One of those was a remedy that could be given in calcium problems of the body. Now I would never have considered that remedy for Jos, but now my interest was triggered because of what I read about the calcium blockers. So I asked a lot of questions in class, and learnt to take a different view to this very remedy.
At home I studied it some more, and at last I tried it on Jos (ofcourse after his consent). He was having 8 attacks at that time (I hadn't come up with a new helpful thing at that point). After giving him the calc.carb. he stayed free of his attacks for almost 24 hours. Then the attacks came back gradually
But boy, were these 24 hours like HEAVEN to us!!!
See, the only thing I want is getting CLUES about what might help people. Perhaps only temporary, but it's a soft and curative way of treating, you don't have the bad side effects then if on any ordinary medication. So I consider this 24 hours as a nice present  , and perhaps one day I will find more answers to less temporary remedies?
As I'm writing this, unfortunately hubby's just had a next attack. I think it will come back, I will have to try and look some more if I can come up with the next one, darn, I wish I could find the PROPER one that "does the trick". I would eat half my arm to relieve him from this pain.
PS DO NOT TRY ANY HOMEOPATHIC REMEDIES MENTIONED SOMEWHERE ON YOURSELF. YOU COULD VERY WELL MAKE THINGS WORSE, BECAUSE HOMEOPATHIC REMEDIES ACT STRONGLY IN THE OVERLY EXCITED BODIES OF CLUSTER HEADACHE SUFFERERS! AKS A SKILLED HOMEOPATH FIRST!
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| « Last Edit: Nov 16th, 2003, 4:45am by HannahFroukje » |
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Cerberus
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Re: Hi I'm new too
« Reply #15 on: Nov 15th, 2003, 2:59pm » |
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Awwwww, hell, I'm willing to fill out the form. A little writing can't hurt anything, besides, its gonna further your education right?
Ramon
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HannahFroukje
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Re: Hi I'm new too
« Reply #16 on: Nov 15th, 2003, 4:16pm » |
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on Nov 15th, 2003, 2:59pm, Cerberus wrote:Awwwww, hell, I'm willing to fill out the form. A little writing can't hurt anything, besides, its gonna further your education right?
Ramon |
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Yep ... THAT TOO!
Definately.
I've started writing the questionnaire by now, hubby will be the first volunteer to fill it out, and will help me to fill in the gaps.
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