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Topic: My alternative therapies - let me start over (Read 1051 times) |
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JohnM
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My alternative therapies - let me start over
« on: Feb 18th, 2006, 5:03am » |
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I have posted here many times about what works for me and continues to work for me and I will contunue to do so, but....
I just want to make my position clear on my "alternative therapies" and the same goes for what works for others:
What works for you (or for me) will often, or usually not work for others, but it may just work for some! I fully understand this.
But my posting here on what works for me is the right thing to do - even if you strongly disagree with me and think what I have to say is total BS. Others are entitled to hear what I have to say, and I am entitled to say it.
I just ask that those of you who jump on me (and many others) for sharing what we believe to work from our own personal experience to please try and refrain for a change and be more open to other peoples suggestions. Rather keep quiet for a while instead of jumping right in boots and all and let the thread develop without insulting us. State your opinion by all means, but keep in mind that until the real cause of CH is known and a real cure is available any "scientific reasoning" is just conjecture at this stage.
I agree that anyone using this board to market a BS or snake oil product should be chased away, but just be really sure they are doing it for gain before the first responses fly out, which should be polite instead of the usual rude "Troll comments"
Those who do post any "off the wall" therapies (or cures) sepecially newbies, need to be very aware that what they think is a "cure" is probably not a universal cure, but it may just work for a few people here and if any of you guys think it is safe or low risk to try, then you are free to do so, or not to do so, without us being rudely ridiculed for our postings.
For the record I am not a newbie here - I have been here for years, unlike many "vets" here who have made 1,000's of post in a very short time. I have read just about everything there is to read here to educate myself and I have learnt a lot over the years from this board and I am very greatful to it. I have also made some great friends here.
My recent postings on my therapies are not the result of the effects of a quick result the next day or week, they are from consistent long term positive results in keeping me pretty much CH free for several years, and also giving me the tools to stop a CH cycle within less than a week if it does strike. This is something no meds have ever been able to do for me in the past 40 years.
So I want to start over here without the fights and insults, both from me and from you. It was never my intention to piss people off here, and I should never have let you guys piss me off - okay.
I am almost constantly aware of my CH affliction. It is a big part of my life unfortunately and I put a lot of effort and research and thinking into trying to keep it at bay, and have been prepared to make many sacrifices, especially regarding my diet to keep it that way
John
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Jasmyn
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Re: My alternative therapies - let me start over
« Reply #1 on: Feb 18th, 2006, 6:54am » |
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Hi John, I see you're in Cape Town. How's the weather there?
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Jazz 
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AussieBrian
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Re: My alternative therapies - let me start over
« Reply #2 on: Feb 18th, 2006, 8:26am » |
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Nicely spoken, John, and bloody good on ya for standing up for yourself and ensuring everybody knows you're here for the right reasons.
Your alternative suggestions can include witch-craft, snake-oil and frozen bananas for all I care but while you're genuinely here to ask for help, or offer possible help to others, then you've come in like a breath of fresh air.
Regrettably we've recently had a rash of unusual posters, many people are perhaps too much on the defensive and your timing is lousy.
As you state quite plainly, for all to see, let's start again from square one.
Only good times ahead,
Brian.
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JohnM
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Re: My alternative therapies - let me start over
« Reply #3 on: Feb 18th, 2006, 10:21am » |
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on Feb 18th, 2006, 6:54am, Jasmyn wrote:| Hi John, I see you're in Cape Town. How's the weather there? |
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Very hot and very dry but no wind today, although we have had plenty of wind for months and it has been driving us nuts!. We have not seen any rain worth mentioning since last October, and for the previous year or so we had water restrictions, which for some reason the authorities saw fit to lift a few months ago (elections coming up next month?). Our dams are nowhere near full so water shortages here we come again. But life is good in Cape Town. 
John
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Jasmyn
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Re: My alternative therapies - let me start over
« Reply #4 on: Feb 18th, 2006, 3:41pm » |
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Well John, I completely agree with the Brain, he's a very wise man(sangoma) from there Down-Under-The-Bush. The only problem with him is he lacks fishing and rugby skills but we forgive him as he dresses like us and drinks beer.
The Cape of Good Hope is a bloody pretty place, Nick, wind and all! We got some rain here but the sun won't stop shining.
Bad scare you guys had with Koeberg?
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Jazz
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JohnM
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Re: My alternative therapies - let me start over
« Reply #5 on: Feb 20th, 2006, 1:55am » |
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on Feb 18th, 2006, 3:41pm, Jasmyn wrote:
Bad scare you guys had with Koeberg?
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Hi Jasmyn - the authorities have not been coming clean with us on Koeberg Nuclear power station. It was totally switched off on Saturday night (no real truthful reasons yet given), and we have had lots of power cuts while the grid has had electricity diverted to us from the north. Koeberg is supposed to supply everyone else! I blame the French and the past Apartheid governments for this as we didn't need nuclear power here as we have so much gas and coal. The greedy French sold us the system and no doubt the previous govt thought they would be the regional nuclear energy (and perhaps weapons?) leaders. We are now stuck with a monster.
John
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| « Last Edit: Feb 20th, 2006, 1:56am by JohnM » |
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Jasmyn
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Re: My alternative therapies - let me start over
« Reply #6 on: Feb 20th, 2006, 4:45pm » |
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John the grid was so over taxed that Eskom dumped the major Billiton smelters 2 hours each day since the Koeberg incident.
Ja, the apartheid regime thought of lining not only their own pockets but also their own importance. Politics don't change, power seeks power.
The Cape is such a beautiful part of SA it would be a pity if it became the next Chernobel.
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JohnM
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Re: My alternative therapies - let me start over
« Reply #7 on: Feb 24th, 2006, 7:13am » |
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Okay - let’s get back on thread with my detox therapy post:
I make no claims to be any sort of expert on this, but I have given it a lot of thought and gained some insight from personal experience over the years, and I am open to debate on the subject (I am sure many/most of you will disagree with me), but my theory is that CH is caused by junk (toxins?) that is stored in our bodies that have we have not been able to properly eliminate.
Our body tries very hard to rid us of anything toxic through our waste system – blood, kidneys, liver, lungs, bowels, skin etc. It normally does a great job, but some things that we ingest - knowingly or otherwise (air pollution, smoking, preservatives, certain fats, junk food and who knows what else?) are more difficult to eliminate, and may get stored or blocked up in our system’s fat cells, lymph nodes, gut, liver etc while the body figures out just what to do with them. Eventually the body may become overloaded with the junk it cannot kill off and be unable to store any more of, and finally starts releasing this into the bloodstream as a last resort. This is when I believe we get sick and headaches and numerous other health problems begin. Call it a problem Hypothalamus if you like in the case of CH (I won’t disagree with you) but if it is, then I reckon this “junk” may cause the Hypothalamus to go out of kilter.
Eventually, for some of us, enough of this junk finally finds its way out of our body, and after wreaking havoc in the process, the CH goes away until the next time this condition arises (seasonal?). Maybe the Chronics are never able to get rid of enough of the junk?
The argument that only a small percentage of the population gets CH does not necessarily mean that much to me. Billions more suffer from regular headaches and many other symptoms of poor health that are not always “disease related”, like allergies, skin problems, halitosis, (cancer?) and many more too numerous to mention. I think CH just happens to be in the same category.
Did you watch the film “super size” me yet? See what a bad diet can do to a healthy body in a very short time. I know this was a bit extreme but it is not a giant leap from that to the average diet of most people today.
Now to my personal Detox therapy to try and break or prevent a CH cycle:
I think that the detox speeds up this toxic elimination somehow, I don’t understand how or what is involved, but I do know that for about 5 days on the detox I have a vile non-stop HA and feel generally lousy during this process, and then eventually it is like a veil has been lifted and my head is clear and my energy and health returns.
Some of you here have tried this detox with poor or no results. What if the system needs more of a kick-start to start the process than just a detox drink along with the fresh fruit, fresh vegetable, and only water diet? Maybe some radical internal cleansing would help? This eventually led me to try the colonic cleansing route. After many months of pondering the risks and the claimed benefits, I first tried the colonic in November. I was totally CH free at the time, but felt tired, listless and bloated a lot of the time. The cleansing process was ok and much easier that I expected. I had 2 blockages in the colon. One they cleared on my first 45 minute treatment, the second on my next treatment a week later. I had a throbbing HA the day after each visit. But my energy has since returned!
I now include much more roughage in my diet to try and keep my colon “clean”. I add a table spoon each of whey powder, oat bran, ground sunflower seeds, ground almonds and ground linseeds to my fresh fruit and yogurt and milk for breakfast. I found I actually like the taste too. I always drink my 2 liters of water a day. My 3 or 4 times daily bowel movements are now much more consistent and easier (and bigger and longer!) than I can ever remember. And I feel healthier and energetic and even find myself motivated to do daily exercise for enjoyment.
I am not claiming that this is a cure for CH or anything else, but I am positive it has worked wonders for me. If (when!) I feel an episodic CH cycle about to begin in the future, I know what I will do at the first sign!
For the cynics out there - I just ask that your responses be constructive and polite. Convince me I am wrong if you feel the need, but don’t just tell me I am wrong because of CH dogm,a or that you believe differently. Remember that no one yet really knows the truth about CH. Not you, not me. The truth is yet to be found.
Try this if you are open minded enough and let us all know how you get on. All I have to gain is the knowledge that I might have helped a fellow sufferer.
John
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AussieBrian
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Re: My alternative therapies - let me start over
« Reply #8 on: Feb 24th, 2006, 7:37am » |
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Certainly won't be going that route myself, but can see straight away why its probably a great help to many - a healthy body and a positive outlook are a major plus when it comes to coping with CH.
I've had major cycles I've handled with relative ease because everything else has been alright at the time, then just a run of serious shadows has cruelled me completely because I was down with the dreaded lurgy or had financial problems or the like.
There's a lot to be said for your thoughts and thanks for passing them on.
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seasonalboomer
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Re: My alternative therapies - let me start over
« Reply #9 on: Feb 24th, 2006, 9:00am » |
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John,
I appreciate that you feel as a result of your detox health plan you are better equipped to deal with your CH as a result of your detox program. And since you've kindly demanded that those of us who believe differently "be nice", I'll be nice.
I agree with you to the point that says that if you are in better overall health, and you are eating balanced nutrition, that dealing with CH is easier and that your mental ability to cope is improved.
But, I disagree with your inference that those of us who might not prescribe to the benefits of altnernatives as being caught in "CH Dogma". And that acceptance of the growing understanding that there are medical treatments that can help many of us cope better with CH are somehow not clued in like those who find help with alternatives.
John, I'm a big believer in how much Kudzu helped me. I also believe that my physical condition as an endurance athlete and the necessary nutritional discipline I have to have to do this places me in a better position to deal with my CH issues. But I also believe that O2 and Imitrex are amazing, just as much as Clusterbusters and Seeds are a miracle find.
As many of us that find our answers from "alternatives" or mixes of the schools of thought, there are many more, who suffer worse than I, that are able to live their life with some semblance of sanity because of the long list of conventional meds that are on this website. I don't think we should deny them their just admiration for finding the best answer that works for them and surviving CH to tell the story.
So all I'm saying on your thread is that this is a very careful balancing act in talking about alternatives. There's enough info on the web on both sides of your detox theory to either make your theory seem as useful as astrology or as powerful as the invention of penicillin. The truth, as I've often said, is somewhere in between.
So, just as you've asked those that disagree with you "be nice", I would suggest that for those that are "anti-med" to be equally sensitive to the fact that many CH'ers have found their answer using conventional meds and treatments and they also shouldn't be made to feel "less than" for not considering your (and many other's) alternatives theories.
Scott
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JohnM
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Re: My alternative therapies - let me start over
« Reply #10 on: Feb 24th, 2006, 9:41am » |
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Thanks Scott for the reply.
Perhaps my writing skills are not that great and it is difficult to put across, but I have my current beliefs and theories - others have theirs, and as you say the truth may lie somewhere in the middle. I may be totally wrong but have a strong feeling that I am at least on the right track 
I have not tried Mushrooms or Seeds as this is not the USA and we don't seem to have access to them here, not that I feel the need anyway. They lock you up and trow away the key here for possession of hallucinogenics. Nor have I used Kudzu - it only became known long after I solved my own problems. But I am sure they work well for some.
Also O2 I have never used. I have my own concerns on the safety of O2 especially for those chugging lots of it. No-one here seems to worry too much or discuss the safety of their lungs on 100% O2 - is it really safe? I am unsure.
I don't want to deny the use of conventional meds - I used them myself for years amd I have had great relief from Imigran injections in the past and have been very greatful for them. I still have a stock pile of them just in case
But I have chosen to try and be totally drug free in my CH management and so far I am having good success. I am not talking about "coping with CH" here, I am talking about breaking a cycle quite rapidly in 5 days and preventing a cycle from becoming full blown by taking early action. My somewhat radical approach is working for me and maybe it would work for some others.
By CH Dogma I guess what I am referring to is the "Deformed Hypothalamus" as the reason for CH. I think this is just another "theory" but because it has high level support it is "taken as read" and is not open for debate. I don't totally buy into it. As I stated on several occasions before, I do believe the Hypothalamus may cause the CH symptoms, but it may not be the real "reason" if this makes sense. What is causing the Hypothalamus to be out of whack? Birth deformity? It doesn't sit well with me - something is causing it, but what? that's just my viewpoint though.
Maybe the Seeds, Kudzu, Shrooms or even my version of the detox temporarily fixes it - who knows for sure.
Debate and fresh ideas are what is needed.
John
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MJ
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Re: My alternative therapies - let me start over
« Reply #11 on: Feb 24th, 2006, 10:08pm » |
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"Debate and fresh ideas are what is needed."
I agree John.
Just want to sneak in that the seeds are a great source of fiber too.
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godsjoy777
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Re: My alternative therapies - let me start over
« Reply #12 on: Mar 4th, 2006, 4:41pm » |
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I am currently cleansing and fasting with prayer....for reasons other than cluster headache...(However it appears my cycle has been starting to rev up).... I do believe there may be some answers to be found outside of the normal medicine box.....I once did cleansing with colonics at the beginning of another cycle and I believe it made the cycle less intense and shorter....It was years ago....
My cycles got much harder and much longer only after being prescribed all the meds...hmmmm....I think that seems to be the case for many of us here....Yes...I still have a stockpile of triptans though I am not useing them.....and I haven't gone completely off my Zonegran....and I do thank God for my O2 tank.....I'm praying for a miracle....and hope the cleansing will get me on the right track....I will try seeds maybe next ....in fear and trepidation...... 
Karen
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kcopelin
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Re: My alternative therapies - let me start over
« Reply #13 on: Mar 12th, 2006, 7:27am » |
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I am considering a total detox/fast. Karen, God did not give us a spirit of fear, but I gotta be honest, I don't want to go back to CHs with nothing to help me.
Did you do a juice fast? Am considering just eliminating diary products-maybe that will make a difference.
kathy
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godsjoy777
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Re: My alternative therapies - let me start over
« Reply #14 on: Mar 15th, 2006, 6:44pm » |
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I did a Mastercleanser fast at first....otherly known as "the Lemonaide diet" It is fresh squeezed lemon juice in water with Grade B maple syrup and some cayanne pepper....I did it for 4 days then went to just fresh fruits and veggies for awhile....went off coffee....though I still will take an excedrine now and then if a daytime headache comes around...but not very often.....
Actually...so far I feel a lot better physically....and the hits aren't as regular so far....hmmmm...We will see...I only use O2 to abort and am on a very low low dose of Zonegran for prevents ( what a laugh)...
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schinnen
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Re: My alternative therapies - let me start over
« Reply #15 on: Mar 16th, 2006, 7:37am » |
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The human body is a wonderful machine. It has a marvelous waste disposal system, processing it and keeping it separate from the rest of the body (instestines, kidneys, bladder). While it may make some people feel good to "cleanse" their bodies of "poisons", in reality, unless one has a disease or has an injury that tears the intestines, or bladder or defective kidneys, allowing waste products into the blood stream, all that these diets appear to do is keep you hungry but in reality have no effect upon your brain (physical effect). Supposing that these diets somehow "cleanse" your body (although the body continually produces waste products, eating or not and disposing of them), once you begin eating anything the wonderful body, after processing the food and drink, continues to produce waste and gets rid of it. There is no harm in going on these "cleansing" diets every now and then, but don't expect them to improve your CH or whateveer else ails you. Some people take laxatives while on these diets-one can become addicted to them. Be careful if you want to go on one of these diets and please restrict yourself to just a few days a year. Remember, the bacteria in our body are necessary to keep us alive and there is no way to get rid of them. I'd rather have a steak and let the body take care of itself
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floridian
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Re: My alternative therapies - let me start over
« Reply #16 on: Mar 16th, 2006, 11:46am » |
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on Mar 16th, 2006, 7:37am, schinnen wrote:| While it may make some people feel good to "cleanse" their bodies of "poisons", in reality, unless one has a disease or has an injury that tears the intestines, or bladder or defective kidneys, allowing waste products into the blood stream, all that these diets appear to do is keep you hungry but in reality have no effect upon your brain (physical effect). |
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Really? Fasting has no effect on insulin, triglycerides, hypertension, c-reactive protein, and hormones like leptin and ghrellin? Leptin and ghrellin have no effect on the brain, they don't directly influence activity in the hypothalamus?? Those are amazing conclusions that fly in the face of thousands of other studies!!!
Quote:Divergent Regulation of Proopiomelanocortin Neurons by Leptin in the Nucleus of the Solitary Tract and in the Arcuate Hypothalamic Nucleus.
Diabetes. 2006 Mar;55(3):567-573. Huo L, Grill HJ, Bjorbaek C.
Beth Israel Deaconess Medical Center, Department of Medicine, 330 Brookline Ave., Research North, RN 325, Boston, MA 02215. cbjorbae@bidmc.harvard.edu.
Proopiomelanocortin (POMC) neurons in the arcuate nucleus (ARC) of the hypothalamus are activated by leptin and mediate part of leptin's central actions to influence energy balance. However, little is known about potential leptin signaling in POMC neurons located in the nucleus of the solitary tract (NTS), the only other known population of POMC neurons. Leptin-responsive neurons do exist in the NTS, but their neurochemical phenotype is largely unknown. The contribution of NTS POMC neurons versus ARC POMC neurons in leptin action is thus undetermined. We show here that in contrast to POMC neurons in the ARC, leptin does not stimulate phosphorylation of signal-transducer and activator of transcription 3 in NTS POMC neurons of POMC-EGFP reporter mice. In addition, leptin does not induce c-Fos expression in NTS POMC neurons unlike ARC POMC neurons. Fasting induces a fall in POMC mRNA in both the ARC and the NTS, but different from the ARC, the reduction in NTS POMC mRNA is not reversed by leptin. We conclude that POMC neurons in the NTS do not respond to leptin unlike ARC POMC neurons. POMC neurons in the hypothalamus may therefore mediate all of leptin's signaling via POMC-derived peptides in the central nervous system. |
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floridian
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Re: My alternative therapies - let me start over
« Reply #17 on: Mar 16th, 2006, 12:11pm » |
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Study 1: A drug that has shown some promise for CH is leuprolide. It is believed to work by reducing the secretion of leutenizing hormone (LH) and follicle stimulating hormone (FSH), which are disordered in cluster headache.
Study 2: Acute fasting has an inhibitory effect on FSH and LH secretion.
Your Conclusions ??
A. Fasting cannot possibly have any effect on CH.
B. Fasting might have an effect, although it has not been studied.
C. It's lunch time, I am going for a walk and then I am going to eat my cheeseburger.
(The correct answers are B and C. Today is a Hardee's day!)
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| « Last Edit: Mar 16th, 2006, 12:16pm by floridian » |
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BobG
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Re: My alternative therapies - let me start over
« Reply #18 on: Mar 16th, 2006, 12:34pm » |
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on Mar 16th, 2006, 12:11pm, floridian wrote:
Study 2: Acute fasting has an inhibitory effect on FSH and LH secretion.
Your Conclusions ??
A. Fasting cannot possibly have any effect on CH.
B. Fasting might have an effect, although it has not been studied.
C. It's lunch time, I am going for a walk and then I am going to eat my cheeseburger.
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A. Fasting has a big effect on me. If I get overly hungry I get a bad headache.
B. I have non-un-scientificly studied the problem. See A.
C. Bring me back 2 double bacon cheeseburgers, and yes, I would like fries with that, super size it.
And a pepperoni pizza.
And a 82 oz DIET Coke to wash it all down.
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LeeS
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Re: My alternative therapies - let me start over
« Reply #19 on: Mar 16th, 2006, 12:41pm » |
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on Mar 16th, 2006, 12:11pm, floridian wrote:
We don't get Hardee's Flo - do they taste as good as they look?
-Lee
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floridian
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Re: My alternative therapies - let me start over
« Reply #20 on: Mar 16th, 2006, 1:00pm » |
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on Mar 16th, 2006, 12:41pm, LeeS wrote:
We don't get Hardee's Flo - do they taste as good as they look?
-Lee |
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I like their new 'thickburgers' - similar to a burger from a sit-down restaurant, but quicker and cheaper.
Glad you said DIET Coke, Bob ... was starting to worry about the calories. But that much DIET soda will surely negate the burger, pizza and fries.
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| « Last Edit: Mar 16th, 2006, 1:02pm by floridian » |
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CHTom
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Re: My alternative therapies - let me start over
« Reply #21 on: Mar 16th, 2006, 4:39pm » |
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on Mar 16th, 2006, 11:46am, floridian wrote:
Really? Fasting has no effect on insulin, triglycerides, hypertension, c-reactive protein, and hormones like leptin and ghrellin? Leptin and ghrellin have no effect on the brain, they don't directly influence activity in the hypothalamus?? Those are amazing conclusions that fly in the face of thousands of other studies!!!
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Sure, fasting will have a short-term effect on the body as it must "digest itself" to get the nutrients that it needs-no harm for a few days but no good either, unless you want to lose weight. It is 18th Century and earlier medicine, when food was generally bad anyhow, so staying away from it for a while was probably good-what next, leeches and blood letting?  Give me that old time hamburger!
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| « Last Edit: Mar 16th, 2006, 4:40pm by CHTom » |
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