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Topic: 35years (Read 338 times) |
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margie
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Hi , This is a great board. When i was 17 years old i got my first CH. i am now 51. How i wish the internet was around..it would have saved me 5 years of searching for a diagnosis.
I am posting here only once because you all will probably ignore this post, but I have to put this out there.
In 2000 i was diagnosed with chronic neurological infection called Lyme Disease. I later found out I have three other diseases: mycoplasmas, Bartonella(cat scratch fever) and Babesiosis. I started treatment with long term antibiotics. and anti-malaria drugs for the babesiosis.
None of this treatment stopped my CH and what you guys call shadowing.
I really started doing a lot of research on the bacteria and parasite. As a child i suffered from chronic headaches, stiff necks, cognitive problems and depression hit when i hit puberty. All of these symptoms are common with Lyme and Bartonella infections. Yes I was biiten by ticks as a child.
Now i have always thought that CH's were alive..that they had a mind of their own.they attack us ...if you study parasites and certain bacteria you will find that they have certain life cycles and are cyclical in their habits...could one of these bacteria/parasite in my body be causing the CH's?
I then met a woman whose husband had resently been diagnose with neurological Lyme disease and was a CH sufferer also...this really got me thinking..
Anyway why i am here is to suggest that any of you who are not geting any relief from the attacks may want to go to www.lymenet.org or just google all the diseases I have mentioned and see if you may have a connection.
For any parent on this board..your child is at a very high risk of having Lyme disease as kids are in the highest risk group..and a tick can be as small as a pencil point so you may never have seen the tick bite.
Ok now the really weird part...i have not been able to get rid of any of my CH symptoms with antibiotics...of course everyone is different..so some of you maybe helped by the drugs given for theses diseases.
What has stopped my CH attacks so far and the constant shadowing I lived with is taking high doses of Vitamin C and sea salt. Yes i am taking these to kill the organisms in my body...and now I feel that this may be my cure for CH....is killing off the organisms stopping the clusters...I thinks so.
Anyone can try this..you take one gram of Vitamin C and 1 gram of sea salt(1/4tsp) for each 15 pounds of body weight. So if you weigh 150 lbs. you take 10 grams of each per day.
I was due to go into a cycle over 6 months ago and so far so good. My face/head hasn't felt this good in 30 years....
You can go to the Yahoo groups, put in Lyme Disease and find the Lymestategies site to read how to do the protocol...
I have been taking the sal/c for over a year..my cholesterol has dropped 65 points and my blood pressure is finally normal after years of problems.
Ok i guess i have said enough...all i can add is ..do your own research on these diseases...and think about hhow these CH'xs have a "mind" of there own..maybe it is something alive inside us causing tis pain.
Plese feel free to e-mail me if you want more info..but just ignore me if you think i am nuts.
Also for all the parents whose kids have been diagnosed with CH....I would reallyresearch Lyme disease and yes there are parents giving their toddlers the salt/c..so it is very safe...Best wishes to all of you who are living this nightmare... Margie
mcpepper25@hotmail.com
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seasonalboomer
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Re: 35years
« Reply #1 on: Jun 21st, 2006, 9:24am » |
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what kind of sea salt did you use?
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BobG
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Re: 35years
« Reply #2 on: Jun 21st, 2006, 11:14am » |
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on Jun 21st, 2006, 8:47am, margie wrote:..but just ignore me if you think i am nuts.
Margie, you’re not nuts. Everyone here has their own theory about causes/cures for cluster headaches. You’re entitled to yours. Lyme disease has been mentioned here many times over the years. IMHO, there is no connection between Lyme disease and clusters. But, I could be wrong.
How i wish the internet was around..it would have saved me 5 years of searching for a diagnosis.
This website has been here for 7 years.
could one of these bacteria/parasite in my body be causing the CH's?
Nope. You have a broken hypothalamus gland.
Ok now the really weird part...i have not been able to get rid of any of my CH
symptoms with antibiotics...of course everyone is different..so some of you maybe helped by the drugs given for theses diseases.
Really not weird at all. There are no drugs made for cluster headaches. All the drugs used to treat it were/are made for something else i.e. Imitrex was invented for migraine headaches and prednisone is a steroid.
Best wishes on beating that Lyme thing. |
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Barry_T_Coles
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Re: 35years
« Reply #3 on: Jun 22nd, 2006, 7:54am » |
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Hi Margie
Welcome, I have to say that personally I dont think ticks are a real starter for our condition, the reason being that I have lived and worked in the bush all my life now 57 and getting uglier every day.
I've been bitten by ticks all my life and apart from the discomfort from the initial bite/bites I have never suffered any effects; I didn't get my first cycle untill I was 51 years old and I would'nt think it would take that long to effect me, my worst ever tally of bites was 64 and that was 2 years after my first CH cycle as an episodic before I went chronic.
Hope this allays your fear of ticks as a cause.
Kind regards
Barry
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| « Last Edit: Jun 22nd, 2006, 7:55am by Barry_T_Coles » |
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Charlotte
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Re: 35years
« Reply #4 on: Jun 22nd, 2006, 3:25pm » |
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Hi, Margie. We don't ignore people here. We like people. We especially like to offer support to new people.
I hope you will sign back in and keep in touch.
Charlotte
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margie
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Re: 35years
« Reply #5 on: Jun 23rd, 2006, 9:41am » |
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Hi Guys, I am sorry if I acted like I did not want to be part of this board..ifor years I have sufferd sooo much from CH's and only a fellow sufferer could possiblby understand the pain we endure...so I see this board as a life saver for many people.
It is just that i am now consumed with tick-borne diseases and their effects on our bodies. I just think the fact that our headaches follow a cycle and a timeframe..and living organisms do the same...As far as oxygen helping us..Lyme spitochettes hate oxygen..it will kill them or at least make them retreat into a cyst form..so maybe that is why oxygen can abort an attack?? These are just ideas...I am not a scientist..
All i know is that I am due for my cluster... last attack was in the fall of 2002..I have been taking antibiotics with probiotics and now the salt and Vitamin C and ..NO CLUSTERS...and my continual "shadowing" is now very seldom.
Unfortunattly being infected by just Lyme Disese is not the case ...everyone is usually infected by babesiosis..a malaria-like parasite and Bartonella...a very serious bacteria. And regardless ofwhat mainstream medicine is saying about these diseses...that they are easily treated..it is just not the case.
If you look up verterinary research on Lyme and Bartonella you will find these diseases are not cured with massive doses of antibiotics, biopsies of the animals brains still produce live organisms.
This is for Barry...if you have been "in the bush" for that many years...then you are in a very high risk group..if you google the US Forestry and Lyme Disese you will find out that they are very concerned about Lyme, Bartonella, etc. And yes, the bacteria can be in you body your whole life and not be reactive..then bam..something changes in your system and the bacteria starts acting up...this is a fact..so you could very well have Lyme and other tick born infections in your body and not know it.
BobG..Back in 1973-1978..the first five years of my clusters...I did not have a computer..and this board did not exist..I had to depend on MDs who all thought I was nuts when i said i would get this horrible pain at exactly 2am every other night....
The only way to find out if you are infected with these bacteria is to be tested by a good specialty lab..regular Quest or Labcorp almost never pick iit up because an Elisa ia almost worthless and their Western Blot is not adequate...if you have any other health issues besides the clusters, then I would really look into Lyme,etc. One of the best boards on the net to find a good doctor for testing is to go www.lymenet.org. and post in the Flash forum under doctors...or just go to PUBMED and look up Lyme and Bartonella or go to the Columbia Hospital and Lyme Disease site//there are hundreds of Lyme site..the Genome Study chose Lyme Disease as the organism to study..so they know a lot about these bacteria..i went to their presentation on it and they have never seen any other organism in the world as mind boggling as this one...
OK...I am not here to give you a lesson in Lyme..iIjust wanted to maybe help a few people get rid of their clusters..or at least minimize them..
Like I said it is an easy treatment..you can use sea salt -Redman or Himalayan is good or sodium chloride tabs from www.americarx.com and regular vitamin c....
if you google salt and vitamin C you will find that many people with other illnesss or disorders are trying it ..Hepititis C people, autistic kids. i would also recommend trying antibiotics with it...also if you have babesiosis..look up the symptoms...you can take artemisinin for that...
I know this is a lot of info..but if just one person listens and go to a lyme Disease specialist from this board and finds out they are infected then maybe others will follow suit and go get tested also..
Mainstream medicine saying that it is our hypthalamus causing cluster...well Lyme and Bartonella definity mess with this gland,and the pituitary , your addrenas ..all organs of the body, etc....so who knows...If anyone want more specific info on the salt and c they can e-mail me..I am happy to help. If jsut one other person gets relief..then maybe we are on to something here...and we can stop this nightmare from occuring.. Margie
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margie
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Re: 35years
« Reply #6 on: Jun 23rd, 2006, 11:30am » |
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thank you Charlotte, Hopefully I won't need support..if the protocol I am doing really works...but this board helped me last attack with the info on dividing up the Imitrex injection..just a third of it worked as well as the whole shot!! margie
PS It should say..33years..not 35..can't subtract!!
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Margi
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Re: 35years
« Reply #7 on: Jun 23rd, 2006, 1:07pm » |
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Margie - nice name (except you're spelling it wrong  )
I am glad you've found relief for your pain, that's awesome. But I think what's more likely happening for you is that you're in an extended remission period, a common occurence for sufferers over 40 years of age. I know folks who've gone 6 - 7 years in remission, then a cycle hits them again. One friend is nearing 70 and he just recently had a 6 year remission. Not uncommon at all.
I hate to burst your bubble about all the research and treatment regime you're doing. I just don't want you to become devastated when/if a cycle hits you again.
Another Margi (but I spell it right )
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Charlie
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Re: 35years
« Reply #8 on: Jun 23rd, 2006, 3:24pm » |
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Welcome Margie.
I woke up in my relcliner with my first cluster attack while watching Johnny Carson in 1969 and they disappeared in 1991 during some of the most stressful times of my life. I was 45. I'm tickled pink and so far have avoided things like sea salt. My CH was successfully treated by my neurologist when he showed me a way to lessen their severity. It was unorthodox but the price was right. Otherwise what follows would have rung every alarm in my skeptic's brain:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I'm glad that you have had such good results in any event.
Charlie
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margie
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Re: 35years
« Reply #9 on: Jun 23rd, 2006, 5:11pm » |
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Hi margi!
Sorry to hear another margie is being attacked by this beast. I know that remission is a possibility on it's own..that the salt/vit/antibiotics may have nothing to do with it....I was actually going to wait another year before posting here..but I figured if someone wanted to just go and give the salt/ Vit c a try..then maybe I should try to convince someone now. This combo kills the organism by osmosis...inside the cell, but does not damage the cell.
Some people get no relief from these attacks and i really feel this could benefit someone . I was always having face pain..what you guys call shadowing and now it comes only once in a while and if the salt/c is helping with this then that is a big plus for me.
i realize there is no way for anyone to know if this protocol is actually stopping the clusters..i just figured if someone wanted to give it a try..why not.
Some of the other benfits I have recieved from this treatment is my cholesterol has dropped 63 points ( or whatever they call the numbers) and my blood pressure is better then it has ever been.
Also for anyone losing their hair...my hair used to come out in bunches in the shower..now i only get a few loose strands!!
Ok I am done with the "sales pitch". I will come back in 6 months or so and let you know if the CHs are back or not...if anyone else is willing to be a test subject..let me know . I wish all of us never had to worry about how to end or just endure this pain...no person should have to suffer like this..I came here only to try to help..I still feel that Lyme Disease and other infectious diseases I have are the reason I have Cluster Headaches. Unfortuntely until we get an accurate test for Lyme disease that every lab in the US will use, then we won't know how many CHs suffereres actually have Lyme, etc.
Best wishes to everyone Margie
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