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Topic: Please Help with my CH..... (Read 1136 times) |
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Ob1kanobee
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Please Help with my CH.....
« on: Dec 24th, 2006, 12:45pm » |
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Hi, I am a newbie and have been reading lots on this site, what great information and great support. I have been getting CH for about 8 years. It wasn't until last year I figured out what they were through the use of the internet. I am just starting a cycle (I guess that is what it is called when they start to come). They usually have always come at the same time evryday (like 10:45 a.m. so I always thought it was hunger since I wasn't a big breakfast eater) (then I thought it could be an absessed tooth "wishful thinking" . I have consulted a doctor for the pain and they have either prescribed Firocet which doesn't work (walk-in clinic) and my regular doctor who always wants to give me a round of I think some kind of steroids (comes in like a CD case) and says it is allergies most likely.I was also told by a chiropractor once that it was TMJ (that cost me a few hundred bucks). As soon as I get health insurance I'm gonna see a doctor from the list in my local area I found on here. IN THE MEANTIME, does anyone have any suggestions. I have been waking to these CH lately instead of them coming on while I'm awake, although it is not all the time like that. I usually get one per day now for the last week. If I catch it in time, I take a Goody's Powder and a Coke, but I have to be quick or else it is full blown. They seem to be getting more intense, but those are the ones that wake me and I could not see coming. I also use a wet wash cloth wrapped with a about 4 icecubes. I prefer the cloth to become wet and I need the cold water on my face and scalp. I wring it out when it gets too wet (I wring the cold water on my head, it feels good). I also like to suck on the wash cloth and bite my teeth on it, it seems to really help with the jaw pain. I also use those menthol sticky pads that I cut to my forehead and stick when I don't have ice or cold cloth. I use the big ones and cut them, you get more use. FROM WHAT I HAVE READ HERE I am thinking about trying the water thing (drink mass quantities) and this Kudzu stuff. I would like to do the oxygen as well, I might have to buy that before insurance. I will look for a good used system and buy the CHmask. I will also take supplements. I am afraid the Goody's might put me into the rebound effect (anyone have any insight on that let me know). MY QUESTION IS THIS: AM I MISSING ANYTHING WITH MY TREATMENT PLAN OF ATTACK Which is the (1) The Water Thing (2) The Kudzu (which I don't know how much to take, so can anyone enlighten me on that (3) Oxygen when I can get a hold of it (I need to purchase the tank, regulator and mask) WHAT DO YA THINK? I appreciate from the bottom of my heart your help with this. Thanks
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Linda_Howell
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Re: Please Help with my CH.....
« Reply #1 on: Dec 24th, 2006, 1:28pm » |
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Hi and welcome.
First off, in the future could you use more paragraphs in your posts as it is very hard to read and absorb what you're taking and not taking so we can help you. (no insult at all intended)
Please try oxygen as your first line of attack to abort a headache. It's cheap, compared to the meds we take, it's safe with no side-effects, and it works in 70% of us. You will need a prescription for it from your Dr.
Here is a link. http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have no idea of what a Goodys powder, is but if it is an OTC pain reliever I can safely tell you to save your stomach and liver. That's like a pea-shooter against a battleship for this pain. Energy drinks like Rock Star or Red Bull have helped as well as cold packs and strong coffee.
Narcotics like Vicodin rarely do squat and they can and do cause rebound headaches. Stay away from them.
There are drugs that we use as abortives as well as preventatives with Imitrex & 02 as the abortive of choice... and Verapamil and Lithium as the preventative of choice. You will need to talk to your Dr. to see if either are right for you.
The best thing you can do for yourself right now is to be very informed and educated about your condition. You will need to be your own best advocate in this.
We will help anyway we can. Linda
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Jonny
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Re: Please Help with my CH.....
« Reply #2 on: Dec 24th, 2006, 1:30pm » |
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on Dec 24th, 2006, 12:45pm, Ob1kanobee wrote:| It wasn't until last year I figured out what they were through the use of the internet. |
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Get diagnosed by a doctor or continue on being an idiot......the internet does not diagnose anything!
Merry Christmas 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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nani
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Re: Please Help with my CH.....
« Reply #3 on: Dec 24th, 2006, 1:38pm » |
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Hi obiwan, welcome. I think that a proper diagnosis is probably the best way to move forward. Oxygen, waterX3, and kudzu can help other types of headache, though, so you may find some relief either way. This page has a kudzu FAQ, hopefully most of your questions can be answered there. I would back off the Goodys, they may cause MOH (rebound) headaches.
http://www.kudzubusters.com/KudzuFAQs.doc
Good luck and pain free wishes, nani
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chewy
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Re: Please Help with my CH.....
« Reply #4 on: Dec 24th, 2006, 4:05pm » |
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Follow no treatment advice until you get to a CH educated neuro.
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Charlotte
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Re: Please Help with my CH.....
« Reply #5 on: Dec 24th, 2006, 4:11pm » |
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Right, like they're on every street coner. The most important thing about a health care professional is that he or she listens, hears you, and wants to help - enough to do some reading.
Obi, I didn't see "blasting your face with cold air from the car's air conditioner" on your list, or taking a fast walk. Those sometimes help me.
Charlotte
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| « Last Edit: Dec 24th, 2006, 4:21pm by Charlotte » |
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chewy
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Re: Please Help with my CH.....
« Reply #6 on: Dec 24th, 2006, 4:18pm » |
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Quote:Right, like they're on every street coner.
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Yup. Bad advice to find an educated neuro. 
But if you decide to do so then check out these street corners.
Florida
Dr. Roberta Rose
Sebastian
Potter Priscilla
Miami
David Torrisi
Pensacola
Steven Wheeler
Miami
Steven Kobetz
Miami
Frank Wierichs
Venice
Michael L. Waters
Jacksonville
John F. Wilker (Family Practice Associates)
St.Cloud
Dr. Todd Hartley
Maitland
Sam Synder
Ft Lauderdale
James L. Cimera
Ft. Lauderdale
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| « Last Edit: Dec 24th, 2006, 4:21pm by chewy » |
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Ob1kanobee
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Re: Please Help with my CH.....
« Reply #7 on: Dec 24th, 2006, 11:51pm » |
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Thanks for the insight so far. I just want to clarify that I have been diagnosed with cluster headaches BY A DOCTOR however it does not appear that my treatment was inline with what I am finding on the internet, especially in this forum. I was once prescribed Maxalt fot these CH and it did not work either.
When using the internet I am well aware of advice and suggestions and how they might not be the best course of action. I am also well aware of the people that call other people idiots when they have no clue. Yes I should see a Nuerologist and I will so that I can get proper medication, thanks for your kind suggestion.
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Ob1kanobee
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Re: Please Help with my CH.....
« Reply #8 on: Dec 24th, 2006, 11:58pm » |
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In the meantime, since I don't think I will be able to prance right in to one of their offices, I don't see how the water treatment would hurt, or the Kudzu or the oxygen. Heck, you can go to an oxygen bar and breathe a certain amount of it, I am sure you can follow the guidelines I have found on here and use it at my home.
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Kevin_M
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Re: Please Help with my CH.....
« Reply #9 on: Dec 25th, 2006, 1:10am » |
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on Dec 24th, 2006, 11:51pm, Ob1kanobee wrote:| I have been diagnosed with cluster headaches BY A DOCTOR |
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That's quite a departure from your first post.
You didn't previously offer to mention that, however did not fail to neglect the treatment for pain and diagnosis for allergy and TMJ but said you figured CH out from the internet. Just wondering.
on Dec 24th, 2006, 12:45pm, Ob1kanobee wrote:| It wasn't until last year I figured out what they were through the use of the internet. I am just starting a cycle (I guess that is what it is called when they start to come). |
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Quote:| I have consulted a doctor for the pain and they have either prescribed Firocet which doesn't work (walk-in clinic) and my regular doctor who always wants to give me a round of I think some kind of steroids (comes in like a CD case) and says it is allergies most likely.I was also told by a chiropractor once that it was TMJ (that cost me a few hundred bucks). As soon as I get health insurance I'm gonna see a doctor from the list in my local area I found on here. |
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| « Last Edit: Dec 25th, 2006, 1:50am by Kevin_M » |
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Ob1kanobee
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Re: Please Help with my CH.....
« Reply #10 on: Dec 25th, 2006, 3:56am » |
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I was first treated for TMJ from a chiropractor. My General Practioner then diagnosed me or perhaps thought at first that my headaches were from seasonal allergies.
After the 3rd year of the seasonal allergy headaches (which were cluster headaches all along) it was diagnosed that I had cluster headaches and was given and prescribed some Maxalt and steroids.
I moved away from the area and my new Doctor became what most people call a Walk-In clinic. They would prescribe me Fiorocet. Since I also suffer from occasional tension headaches as well (which tend to last a lot longer) which I would simply take red excedrin for, When I got a cluster headache it did not last as long, so I figured Firocet must work, I did not know any better.
Through the internet, I finally figured out the difference in writing,so to speak since a doctor never explained it to me. I also read some captions out of a book on headaches.
As far as the pain goes, you and I and apparently everyone else on here KNOWS the difference. Doctors, especially ones at walk in clinics don't know (in my opinion anyway) how to treat a person for CH. That is why it is called "practicing medicine".
I can't make you think I have CH. I have never been given a "Bill Of Sale" so to speak from a doctor in writing that I can carry around with me saying I have CH. What I can tell you is I'm not going to go through the next 2 months without getting the right treatment this time. I was lucky last year that I did not get these CHaiches.
I previously used to get them at the same time (10:45) every day. Now, they are waking me up out of my sleep. Which explains why it is 3:36 A.M. Christmas morning and I am afraid to go to bed. I will be the first one on this forum to say I have neglected my health in general and proper treatment from most likely a Neurologist for these cluster headaches. I avoid Doctors and hospitals like the plaigue, they make me nervous, and I am working on that, I don't have a choice, the pain is too much. I hope this clears the air, but honestly you sound like some of my family members and some people in general that don't believe someone, when they are truly going through something for real.
I honestly feel like if someone has never experienced the pain assiciated with CH, they don't have a clew, would you not agree. I mean it is like trying to tell a virgin what sex feels like. When I say virgin, I do ofcourse mean a person who is over 18. Best analagy I can think of at the time.
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Redd
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Re: Please Help with my CH.....
« Reply #11 on: Dec 25th, 2006, 9:19am » |
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Sorry Ob1, to bust your hump that way, however it's realy for your own protection. There are some people who have self diagnosed, they really don't have CH but sometimes one of it's "cousin" headache forms, and they could be much more easily treated with meds other than we need to take.
Please keep this in mind as we ask you questions, we just want to be sure that you are on the right path here. We aren't Doctors, but there are hundreds of collective years of CH suffering here and we ARE expert patients.
About how long does each headache attack last if you don't take anything for it? What do you tend to do during an attack, meaning what behavior do you do? How many attacks in 24 hours do you normally get? Besides the head pain what other symptoms are present? What have you found to help you cope so far besides meds?
Just trying to help Ob1.
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Ob1kanobee
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Re: Please Help with my CH.....
« Reply #12 on: Dec 25th, 2006, 3:11pm » |
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I am not exactly sure by what you mean by "take anything for it"? If you mean medication, I take a Goody's Powder (Acetaminophen 260 mg, Asprin 520 mg, Caffeine 32.5 mg) only one, and I try and take it with a standard Coke (the brand name Coke). I also try if possible to apply something cold like a wash cloth that is slightly wet with about 4 cubes of ice in it. I apply it on my head, left eye, nose, mouth, tounge and teeth. I tend to move it around from location to location.
When I have taken absolutely nothing and done nothing which is rare, because everywhere I go the past years, I always carry medication. Goody's powder, Red Excedrin, Tiger Balm, Peel and Sticky adhesive cool pads, Valium, Clonazepam, ect. (the Val. and Clon. are prescribe for pannic attacks which can happen anytime throughout the year, but I have done well at dealing with them, but that is another story altogether). To make a long story short I was diagnosed with Bipolar II (1year 6 monts to date) and in my manic phase instead of being happy and crazy, my manic phase manifests itself as anxiety. I pulled my mother aside last evening and she told me that both my grandmother and her brother were institutionalized many years ago for apparently anxiety and my grandmother also had severe headaches where she was constantly going to the hospital. My mother said she does not recall much, she (my mother) was very young at the time. I thought I had been really kept in the dark about all this, but when I called my older sister, she did not know anything about it either. I would be willing to bet my grandmother had CH, and I take after and look like my moms side of the family unlike my two sisters.....
During an attack, I mainly pace around with a wash cloth/ice mixture (as noted before/read above). I can't lay down as this makes it worse (but this is at the peak of the headache). This is wierd, but sometimes I have an urge to got to the tiolet and have a bowel movement (but not always). This could be caused by anxiety, hence the phrase "a person was so scared they crapped there pants". I don't know for sure though, I wonder if that happens to anyone else. Now a tension headache will make me want to vomit.
In 24hours I usually only get one attack, rarely more than one, two at the most, but like I said that would be rare. They come on in about oh I would say 5 to 8 minutes, continually intensify, level, and are gone in the same way and time as they came. Sometimes I feel a little sore afterwards (maybe there is a term for the soreness) on the left side of my head and eye. My left eye usually droops too. I don't recall one of my nostrils running though like some of the things I have read.
One thing that has helped me cope (and I don't mean this in a selfish or bad way), is that from what I have read on hear some people get them way more often and some all the time (chronic). So, I guess I don't have it as bad as some. Could be worse right? My heart goes out to those ones. I don't know how anyone could live with these daily, I could not and would not do it. That would really push me over the edge. Strangely enough though, I have been in a depressive state with my Bipolar II and these headaches have got my mind of being depressed. Now I am a little angry, and I would rather be a little angry than so depressed I can not get out of bed for hours. I'm mainly angry because those around me don't understand what I have been going through lately with Bipolar II (they are supportive but cannot relate) and now I can add these darn headaches to the list.
ON A POSITIVE NOTE, I have not had a headache for almost 48 hours. I am do for one. However I am doing the 3x water thing and vitamins and I have never pee so much in my life. I feel that it is helping, I'll just have to see and keep it up. I ordered the special mask that is talked about on here and am in the process of finding the rest of the necessary 02 gear. I want to try a natural approach to this first before I run to the doctor, just so I can be given a script and a pat on the back. I don't want to add any more meds. Once you get on meds, good luck ever getting off them.
ANY INPUT would be grately appreciative or suggestions. I am still very inerested in the Kudzu. I can't seem to figure out exactly how it effects Seratonin. I suffer from depression/anxiety (reference above) and I don't know how or if it would effect my Serotonin levels. If anyone has any info on that let me know. And please don't tell me to conult a doctor, because they don't have the time or any idea about most of that stuff, except for what the Pharmaceutical Companies tell them.
I know two people who work for doctors and tell me about how all the Pharmaceutical reps are always wining and dining the whole office and want to know why they are not pushing their products. These two people are the office managers (I actually know more than two people who are in the medical field). Heck, they even invited me to go out for Lobster and Steak at Ruth Chris Steak House as her date on more than one occasion (I tend to date people in the medical field).
ANYWAY, if you have any suggestions please respond. I am going to download that form for keeping a record of these headaches and will keep anyone posted that is interested on how I am doing. I AM PLACING A LOT OF HOPE IN THE 3X WATER.
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Ob1kanobee
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Re: Please Help with my CH.....
« Reply #13 on: Dec 25th, 2006, 3:21pm » |
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Oh, I forgot to mention that my headaches last about 45 minutes to an hour from start to finish (in response to one of your questions) Redd. I guess i should be thankful for that as well, they could last longer.
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Guiseppi
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Re: Please Help with my CH.....
« Reply #14 on: Dec 25th, 2006, 9:29pm » |
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2 things,....I get that urge to take a dump too! Maybe it's the body suggesting there is something inside of us causing the pain!!!
A preventative. Since you're episodic, like me, you need to look for a prevent when you're on cycle. I use 1200 mg lithium a day when on cycle. With your parallel medical conditions, have you ever been put on lithium? Did you notice if it had any effect, positive or negative?
I'm 46...(damn almost 47) weigh 190 pounds and 1200 mg lithium a day when on cycle blocks the majority of my headaches. The ones the cut thru I use oxygen, (I use a demand regulator similar to a SCUBA set up) so I get 100 % oxygen. I combine cafergot with my oxygen or the headache returnes when I shut off the 02. Rarely I use imitrex when all else fails me. Good luck finding some relief!!
Guiseppi
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Ob1kanobee
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Re: Please Help with my CH.....
« Reply #15 on: Dec 25th, 2006, 10:02pm » |
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Interesting. When you take lithium, did you have to have blood tests often and if so how often? My Psdoc wanted to put me on Tegretol but said it was very expensive and I would have to have weekly or biweekly blood tests. I don't know why, but I would rather go to the dentist than get my blood drawn. I asked for a script to get bloodwork and i have carried it around for months now. Supposedly they are gonna take it from my ankle this time. That doesn't give me the heebee geebees for some reason.
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burnt-toast
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Re: Please Help with my CH.....
« Reply #16 on: Dec 26th, 2006, 6:23am » |
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I use the blue plastic ice packs applied directly without a towel. Move them around the temple, eye, jaw, forehead as needed. Combined with drinking hot tea this helps with the pain of attacks.
Get help from a Neurologist, Headache clinics seem to harbor docs. with the most CH knowledge and experience.
Since you've been reading the board you already know there are a significant number of potenital abortive and preventative options. You must have also recognized that CH is fickle and everyone seems to respond differently to treatments.
Do some research and discuss options with a Neurologist based on what you want to try and use his/her feedback to fully understand/select your options. Work out a game plan for experimenting with treatments and find what is most effective for you.
This typically involves not just trying different meds. and treatments like Oxygen but adjusting dosage levels to find appropriate treatments. Nothing seems to be perfect but with a little work most can improve their condition.
From the board you must have already figured out that most found little value in headache medications and pain killers for treating CH. Believe it or not, none of these work fast enough to abort attacks and do nothing to address the recurring nature of attacks. Repetitive application of these drugs becomes dangerous and addiction to narcotics is a real possibility. My recommendation is to leave these behind and focus on more appropriate treatments that prevent and abort attacks.
Maintaining an accurate headache journal will help track the effectiveness of treatments and isolate those that are most effective.
Best Wishes,
Tom
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Guiseppi
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Re: Please Help with my CH.....
« Reply #17 on: Dec 26th, 2006, 10:30am » |
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Yeah they do blood draws every couple of days at first then weekly then just monthly, it is important to watch the blood levels and to learn the signs of lithium toxicity. Very few side effects for me and has let me be more or less normal...(my wife will argue that!)
Guiseppi
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vig
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Re: Please Help with my CH.....
« Reply #18 on: Dec 26th, 2006, 1:54pm » |
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"I AM PLACING A LOT OF HOPE IN THE 3X WATER."
good luck, but don't put an inordinate amount of hope in Water 3x.... read.... go to a GOOD CH doctor.
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Ob1kanobee
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Re: Please Help with my CH.....
« Reply #19 on: Dec 26th, 2006, 8:09pm » |
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I wanted to try this oxygen o2 therepy really bad. I went online and happened to find a women today who was selling 5 E tanks (they say 679 liters) completely full of o2. Her mother just passed away the day they bought them for her. I picked them up for $200.00 all full of O2. Now I don't have to make the welder's contraption (I could not get anyone to tell me how to make the welder's o2 device). I emailed Jonny like I was told, but I don't think that email address is any good at the botton of the "o2 works page".
Now I am waiting for my clustermasc from U.K. The ladies husband I bought the o2 tanks from strange enough happened to be a doctor with his training and practicing in Argentina. He did not speak english very well. They moved here because the government won't pay him and when he does get paid, someone like a mob boss takes half his money. So before they left Argentina, he took a gun with him to collect his $7,000 pay for the year (he had not been paid all year) and moved to the states before they killed him. Crazy! I stayed with him and he showed me some of his degrees and pictures, they had not finished packing from their move from N.Y.
When I told him what i was gonna use the Oxygen for he was very surprised. Then when i told him the amount, he thought I was crazy. He did say that my eyes were extremely dialated. i explained to him that I took 1mg of benzo. on the way to his house, but he thinks just by looking at me I have a possible Thyroid Problem. He asked me some questions and was pretty much right on the money. He suggested blood tests and endocrine test. He said the two were very different.
Anyway i spent two hours with the Doctor just talking, he was extremely knowledgeble (except with oxygen flow rates pertaing to CH). I hope I got a good deal on the tanks. They came with two carts as well.
I also picked up my kudzu and magnesium. Does anyone know how much magnesium would be a good benchmark to start taking? I have searched and found no specifics about magnesium dosage.
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FramCire
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Re: Please Help with my CH.....
« Reply #20 on: Dec 26th, 2006, 10:27pm » |
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Is Zyprexa used for the type of bipolar you have? It happens to be a great abortive for me and I wonder if it would work for you on both fronts.
NOT WITHSTANDING!!
YOU MUST DEMAND A REFFERAL TO A HEADACHE SPECIALIST OR NUERO as soon as you get insurance. Push to get in as quick as possible (call every day checking for cancellations if you have to).
With your other medical problems and headaches, you would be smart to make sure you are n the best medcicine regimen you can be.
That's my best advice.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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RichardN
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Re: Please Help with my CH.....
« Reply #21 on: Dec 27th, 2006, 1:46am » |
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First . . .Welcome to Clusterville
When my wife found this site for me (02), I was also using Goody's Powders . . . and having 6-8 attacks a day . . . I just thought they were helping . . . was just destroying my stomach lining . . . most of my attacks were between 20-45 min, some 1 1/2 - 2hrs. It was here I found a "name-for-the-pain" and ways to battle our common beast . . . I got most of my life back.
I agree with all that you need an accurate diagnosis just so nothing serious is overlooked . . . but your continued posts are sounding more and more like CH to me.
If CH . . . yes, it should be the first thing you try to abort an attack. I can usually kill him in minutes if used early-on in the attack . . .MINUTES MATTER!
Continue with the water . . . I'm absolutey convinced water therapy has helped me greatly reduce the intensity/frequency of attacks.
I haven't tried the kudzu yet but intend to . . . first need to investigate any possible negative effects re other medical conditions.
When you get your 02 set-up, PM me and I'll walk you through it . . . takes a little practice, and doesn't always work the first time.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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JeffB
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Wide open till you see God, then brake
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Re: Please Help with my CH.....
« Reply #22 on: Dec 28th, 2006, 6:37pm » |
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Notre Dame fan?
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" It's been my experience that people who have no vices have very little virtues."
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vietvet2tours
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Team MOOSE DROOL Stinky Stuff on a Hook Prostaff
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Re: Please Help with my CH.....
« Reply #23 on: Dec 28th, 2006, 6:57pm » |
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on Dec 28th, 2006, 6:37pm, JeffB wrote:
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Kill em all let God sort em out
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Brew
CH.com Alumnus
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Low Four!
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Re: Please Help with my CH.....
« Reply #24 on: Dec 28th, 2006, 7:42pm » |
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Ob1 - You now have 5 tanks, and it sounds like you got a decent deal on them. But you must have a regulator in order to use them. Did they come with a regulator, and does it go up to the 12-15 liters per minute range?
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Always remember that you're unique, just like everyone else.
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