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Title: I've found something that helps (I Hope) Post by Matt Rutherford on Jun 21st, 2005, 4:09am Just wanted to tell everyone about a break through I have had. About 3 weeks ago a Homeopathic expert suggested I tried a herbal remedy called Bidor by a company called Weleda. Now there are two strengths. There is 1% tablet that is taken daily as a preventative and a 5% tablet that you take when you feel a shadow. I have been a sufferer of CH for 10 years and was willing to give anything a go, so I did. The good news is I haven't had a full on attack since taking them ;;D.(3 weeks) I have had a couple of shadows, but just by taking the 5% tablets they have never developed into a full blown CH. I have looked on this site, and others and find no reference to these tablets. Has anyone tried them before, if so what were the results? |
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Title: Re: I've found something that helps (I Hope) Post by don on Jun 21st, 2005, 7:29am Quote:
According to who? |
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Title: Re: I've found something that helps (I Hope) Post by Iain Nicol on Jun 21st, 2005, 7:40am Wher can you get this stuff? I'm UK too. is it availeble on the high street? |
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Title: Re: I've found something that helps (I Hope) Post by seasonalboomer on Jun 21st, 2005, 8:00am Matt, welcome to the boards. I'm not sure how much research you've done on the Weleda products but here's a great website that Weleda(tm) has regarding their anthroposophic medicines. http://www.weleda.co.uk/index.htm?http&&&www.weleda.co.uk/anthint.htm If you've had success, good for you. I will give you a heads-up though. The the timing of your post (your 4th post) with relation to your reporting of your breakthrough, combined with the type of breakthough (an herbal/homeopathic remedy citing a particular company's product) you had will be viewed very critically. The fact that someone else from the UK who, has posted their first post, and is all excited about YOUR breakthrough, out of all the information on the site, is going to also bring heightened scrutiny to your claim. So, it would be fair, for those of us that are part of this community to consider asking you additional information so that we can differentiate your claim from the many jackals that arrive on our site each month touting miraculous cures and breakthroughs. You don't have to defend your breakthrough, but for the many people that may benefit from a breakthrough, who shouldn't have to wade through crap to find help, I think any sufferer would think it is fair to help out with some more information. Maybe you can tell us more about yourself, what you've tried in the past, whether you're chronic or episodic and how often you get hit, your patterns, etc.... Scott |
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Title: Re: I've found something that helps (I Hope) Post by Iain Nicol on Jun 21st, 2005, 8:12am OK, OK. just as a heads up for you all. My name is Iain Nicol. I live in Harrogate, northern England, and work in the city of Leeds. Email address inicol@retailexpress.com. If you want my phone number, so that you can verify my bloody credentials further, then email me for it. I've just come on to this site to make an enquiry (see separate post) about something i was told, and HAPPENED to see this post on the way through. I have no connection with whoever found this, and i have not replied "enthusiastically", I've just replied, asking a reasonable question. I REALLY resent some half baked accusation of collusion here. It really is not fair. I understand why its been made, but its wrong. As a newbie, to the message room, who has suffered from clusters for almost 30 years now, I was expecting to share some friendly support with fellow sufferers, not to be treated with suspicion. Obviously this group isnt what i expected it to be - I'll try somewhere else. |
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Title: Re: I've found something that helps (I Hope) Post by seasonalboomer on Jun 21st, 2005, 8:23am Easy there Iain, the point is that we are a community of folk who suffer and support those who suffer from this malady. I was making the poster aware that this community will be looking at his post with some degree of scrutiny. If you want to take my post defensively, go ahead. If you are a sufferer, then welcome. Look around some. There's a lot of great info here. You joined today and have made inquiries regarding an herbal remedy and occipital brain stimulation. Shows you're reading but there is a whole lot of info on this site that is here to make use of. You have a community here if you choose to stay. This community has it's own "community watch" for jackals and trolls that come here touting cures. One day you might welcome the fact that in the throws of some level of desperation, deep into a long cycle, you didn't waste a few weeks in pain trying some bullshit remedy because no one said anything. Don't take offense unless I'm on target with my original post. |
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Title: Re: I've found something that helps (I Hope) Post by Matt Rutherford on Jun 21st, 2005, 8:39am I seem to have caused some contaversy, which was never my intentions. If you check the next page of this message board you will see a post from me dated 26th May, where I asked if anybody was aware of any alternative remedies as I was wary about going down the hard drug road. It also describes my story leading upto finding this web site. I understand that you must be wary of fakers trying to sell stuff, but believe me whan I say I could not fake a cluster headache, don't think anyone could. I just thought I would share my recent findings for anyone who wants to try. Bidor is a natural product and reletivly cheap (I know I sound like a salesman again) but it seem to working for me. it is available over the counter, I got it from my local chemist. I hope this clears up any misunderstanding. |
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Title: Re: I've found something that helps (I Hope) Post by Matt Rutherford on Jun 21st, 2005, 8:48am P.S. I have been episodic for about 10 years and until recently I was not aware of cluster headaches. When I am in the middle of an episode I get 4-5 headaches a day, normally around the same time. two of these tend to be at night and always wake me up, with no hope of going back to sleep for at least 45 mins. Now this is all info I could have lifted of your own web site bu believe me when I say that CH are the worst pain I have ever had to deal with, you all know how bad it is so I am not going to explain the pain. I was only offering advice on something which seems to be working for me. If I help just one person beat CH I will be very happy. |
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Title: Re: I've found something that helps (I Hope) Post by seasonalboomer on Jun 21st, 2005, 8:50am There is a mistake in defining "controversy". I simply stated in my first post that your post regarding Weleda's Bidol will probably be viewed with some scrutiny. It is a product that is based on "science" that is a little "left of center". And I've provided those who frequent this site the manufacturer's website so they can evaluate this themselves. As I said in my post, if it worked for you great. If the end of your cycle has coincided with the use of this product, great. Is it not fair that when someone brings a claim of a product that costs money, from a distinct manaufacturer, that the claim should be investigated in whatever so that other sufferers can have a broader understanding of the claim and narrow down the potential treatments to those that are most fruitful? |
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Title: Re: I've found something that helps (I Hope) Post by Margi on Jun 21st, 2005, 10:00am Matt, I've done a lot of research into homeopathy and naturopathy. Here's a link to Bidor - the active ingredients are iron and sulphur, as well as some different sugars. http://www.weleda.co.uk/index.htm?http&&&www.weleda.co.uk/anthropmeds/bidor5%25.htm I'm glad you've found relief from it but please know that taking something like this over long term could build up an iron toxicity in your system and, trust me, you don't want that to happen. Iron toxicity can cause a myriad of problems, not the least of which is a mimicking of multiple sclerosis. So, if it's helping you, great - just get off it as soon as you can, ok? In my opinion, you'd be better off taking feverfew if you want to go the naturopathic route. The theory behind homeopathy is treating like with like (to try to build immunity), so if you're going to treat cluster, you'd have to introduce a histimine into your system and I sure would be hesitant about doing that to a clusterhead. The treatment you've been using is more designed to readjust the digestive system against migraine symptoms which, as you know, is a totally different animal than cluster. |
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Title: Re: I've found something that helps (I Hope) Post by don on Jun 21st, 2005, 10:02am I'm not questioning YOU Matt. I'm questioning the Quote:
Is there an accreditation board deep in the sugar fields of Haiti? |
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Title: Re: I've found something that helps (I Hope) Post by LeLimey on Jun 21st, 2005, 12:53pm Iain hello and welcome.. I have a really quick question for you.. are you the Iain that Carl met in his shop in Leeds? If not hello anyway.. just wanted to get that out of the way really quickly and I'll add to this post again in a minute! Iain and Matt - hello and welcome! I can see you have both had a bit of a baptism of fire but since I'm usually right in the front line on suspicious first posts I'd just like to explain a bit more about WHY this happens. I'm sure both of you have experienced more than one quack cure all in your time. I'm sure you get your email inbox loaded daily with muppets seeling everythinf from enemas to timeshares! Sadly any medical support site is afflicted in the same way. We get virtually daily posts from people selling everything from noni juice to chili oil with every weird and wonderful discombobulation in between! We even have a litle syrian wombat who returns periodically trying to get us all to allow him to trepanne our skulls! Those of us who have been around a while know these for what they are.. chancers.. but we have a duty to those poor desperate people who we were once too who will try anything. ANYTHING to get some relief and all thats happening is they are being parted from their hard earned cash. It does mean sometimes that someone with a well meaning intention but a suspicious timing will get further questions or disbelief if not outright abuse depending on the wording of their post. The difference is that the genuine ones stick around. I hope this helps you understand WHY.. it was and is protective. I'm going back to read your posts now so I can reply to you in a bit more depth! Regards Helen |
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Title: Re: I've found something that helps (I Hope) Post by Iain Nicol on Jun 22nd, 2005, 10:22am Er --- Firstly, chaps and chapesses, Hello. I'm actually very glad to be here. I've put a brief intro on the get to know board. That's me. I make no apologies for going off on one up there That's me, too secondly, I may be the iain that carl met in his shop in leeds. I go to shops in leeds, and I know people called carl. Unfortunately, 3 months into a sideswitching cluster cluster, I cant think well enough to be able to tell for sure.. If it was a guitar shop, then yes, almost definitely. I spend a lot of time in those. Drop me an email with more detail and I'll see. Nice here, isn't it? |
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Title: Re: I've found something that helps (I Hope) Post by sandie99 on Jun 23rd, 2005, 2:33am Matt, I'm so glad you've found something which works for you!!! :) Matt & Ian, you're both warmly welcome to ch.com family! I believe that you ch history was asked solely to help others out. You know, it's bit different if you're episodic or chronic, what other meds & treatments you have tried... I'm a chronic, so when I read that other chronic has found something which helped her/him, I'm very keen to read more about that in case if could help me. Anyways, welcome!!! Sanna/sandie99 P.S I used to live in UK, too... ;) |
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Title: Re: I've found something that helps (I Hope) Post by Cynde on Jul 1st, 2005, 9:25am Iain et al, We should always share our secrets with each other concerning what we think works. We should also be scrutinous and careful about anything we hear about -- whether from homeopathy, "standard" medicine, or our favorite witch doctors. We CH sufferers are in such pain, and often so frightened by what's happening, that we will try anything. In the middle of the night one night, I screamed to my hubby (only half in jest) to get a sharp knife and trephine me -- cut a square out of my skull to let the demons out, like the Maya (or is it Aztecs?) used to do! It seemed reasonable at the time. I am trained as a scientist in the classic American tradition: identify your hypothesis, plan your study, collect evidence, review evidence, confirm or deny hypothesis. My background includes graduate studies in toxicology, epidemiology, and other health studies, in addition to my degree in geochemistry. I tend to be wary of anything that is not "demonstrated" by solid data. HOWEVER, I am also open to the fact that standard medicine knows little about how our brains and bodies and environment interconnect and interact, and that many therapies that were once considered dangerous -- like poisoning people with belladonna and ergot -- are now standard treatments for such things as migraine. And I know several people who, while using modern medicine to treat cancer, AIDS, etc., also use herbal (some not legal) or homeopathic medicines, acupuncture, acupressure, meditation, etc. to help them through the kinds of things that medicine can't help with. Soooo...this is a long-winded way of saying that I want to hear about anything that anyone thinks works. I also want to hear cautions about believing everything we hear and read, because we all want to be safe and to be cured, or at least have the monster controlled instead of it controlling us. So although the temperature in here seems to have gotten pretty high before I joined the thread, I would encourage Iain and others to give us frequent updates on their efforts with new -- or even old -- therapies so we can make our own intellectual and emotional decisions about how to kill the beast. We are in this together, and I greatly appreciate this site for helping me to know I'm not nuts (although the trephination still holds some allure...) ;-) Cynde |
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Title: Re: I've found something that helps (I Hope) Post by unsolved1 on Jul 1st, 2005, 10:38am on 06/21/05 at 10:00:56, Margi wrote:
I've done the "Histamine Drip" 6 times now. 4 of those times brought me 5 PF weeks. Histamine GOOD ;;D Unsolved |
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Title: Re: I've found something that helps (I Hope) Post by floridian on Jul 1st, 2005, 4:03pm on 07/01/05 at 10:38:23, unsolved1 wrote:
But the histamine drip probably Desensitized you to histamine. We know that when a cluster hits, there is a surge of histamine, nitric oxide, substance P, CGRP, and other inflammatory chemicals. In general, each of these increases the other, but me thinks that a constant massive dose depletes these. |
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Title: Re: I've found something that helps (I Hope) Post by pubgirl on Jul 1st, 2005, 5:06pm Matt I'm from the Uk too. I am a CH sufferer who doesn't go near "hard drugs" as they are no mostly no use to Ch sufferers anyway. Have you used 02 therapy? Nothing "hard" about that apart from the cylinder Wendy |
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Title: Re: I've found something that helps (I Hope) Post by don on Jul 1st, 2005, 5:29pm Quote:
Uhhh. You may find we are the only boat in the ocean. It leaky, rotten, the sails are ripped, the motor siezed,and a pirate wouldn't sneeze in it's general direction. But it floats and we be rowin! |
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Title: Re: I've found something that helps (I Hope) Post by Jonny on Jul 1st, 2005, 5:44pm on 06/22/05 at 10:22:26, Iain Nicol wrote:
I like this guy already! ;;D Welcome aboard mate! .....................jonny |
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Title: Re: I've found something that helps (I Hope) Post by paul_pero on Jul 3rd, 2005, 7:57am When I started getting my HAs 14 years ago, my parents started sending me to all sorts of naturopaths, chiropractors, herbalists etc. At least 10 different ones (I stopped going to them when I got married and hed to pay myself :-[)So far not one of them has helped with the pain. It cost a lot though! None of them told me I had Cluster Headaches either. They probably have never heard of them. After getting on this site this cluster I got oxygen (totally natural) and this has been the first relief I have ever got from the pain. Matt, I'm glad you have found relief. I'm just sceptical from experience with all my previous quacks. Good luck with the PF days. PAul |
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