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Topic: LONG TIME CH - NEW HERE (Read 380 times) |
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lorrhaw
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LONG TIME CH - NEW HERE
« on: Feb 22nd, 2003, 9:17am » |
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I am a 42 year old female smoker who has suffered with CH for the last 20 years. I never considered myself to be lucky concerning these headaches until having spent the last 4 days reading the stories here. I am episodic and only get the headaches about every 2 years for a period of 4 - 6 weeks and they almost always follow a period of extreme stress. When I do I usually get about 4 a day with the worst one right after I fall asleep. I just started an episode which is what brought me here. I have always been naive thinking they'll never come back so I haven't done a good job of tracking past treatment success so I have some questions: Years ago I was on Bellergal and I seemed to recall that it helped break an attack if I took them twice a day for a week or so. But I also recall still having headaches so I'm not sure how well my memory is working on this subject. I haven't been able to find any information on this site regarding Bellergal - any info or success? I know Maxalt works very well for me and I was lucky (or smart) enough to have some stashed but the new doctor I saw this week said I shouldn't take more than 8 a month. I took that many in 2 days earlier in the week. I'd also like to confess to trying the water x 3 treatement after reading it earlier in the week. I've got to say that since starting the day before yesterday I only had one bad CH last night about midnight but otherwise I have only had shawdows controllable with OTC meds. I've been adding liquid oxygen to the water three times a day after reading about that somewhere on here. I've also cut out gum with aspertame and don't know if it might be the lack of chewing that might be helping or it could have nothing to do with it.
Sorry to be so wordy but as many of you have indicated it is so nice to have found information and people who can understand how terrible this condition is. Thanks for reading.
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domm
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Re: LONG TIME CH - NEW HERE
« Reply #1 on: Feb 22nd, 2003, 10:29am » |
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lorrhaw -welcome to clusterville. I used Imitrex and oxygen for abortives, until Verapamil kicked in and prevented the attacks completely. My insurance company didn't balk when my Doc prescribed Imitrex well beyond some of the miniscule amounts allow by most HMOs, but I found Oxygen (used properly) to be more effective, cheaper, and with no side effects than any other abortive method I had tried.
Verapamil took about 7 days to be completely effective in getting me PF. I started at a very low dosage and with the permission of my doc, upped the dosage until the attacks were stopped.
Like you, my cycles run only every two to three years, but mine were a bit longer (8 weeks on the first one, then 16 weeks on the second. This one was cut short using Verapamil.)
Good luck in finding the right set of stuff that works for you
Pull up a chair.
domm
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firebrix
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Re: LONG TIME CH - NEW HERE
« Reply #2 on: Feb 22nd, 2003, 1:42pm » |
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Welcome lorrhaw!
Glad you found the site, but sorry that you need to!
You might like to research Oxygen therapy - you'll find heaps on this and the Ouch sites. O2 works on many people and causes little harm used sensibly - don't smoke while you're using it tho'!
Good luck and wising you PFDAN
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
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cbolony
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Re: LONG TIME CH - NEW HERE
« Reply #3 on: Feb 22nd, 2003, 2:59pm » |
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hello larrhaw i use oxygen for the low kips and imitrex injection for 7-10 kips.i get 3-4 cycles a year and yes i smoke also.by the way they also have imitex in nasal spray if you don't like needles kills the ch in about 15 mins.
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JDH
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Re: LONG TIME CH - NEW HERE
« Reply #4 on: Feb 22nd, 2003, 4:11pm » |
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Hi loorhaw,
My cycles sound familiar to yours. I'm episodic and get hit about every two years or so for 6 to 8 weeks (until this current one which has gone on for about 6 months now  ).
I just want to agree with what the others have posted here in saying that oxygen has been a great abortive for me. I have used a lot of Imitrex over the years but I have found that the o2 has worked as well or better with no side effects, and MUCH cheaper.
Good luck and pfdan's to you.
JIm
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It's not what you know, it's what you can prove.
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CHILDINSIDE
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Re: LONG TIME CH - NEW HERE
« Reply #5 on: Feb 23rd, 2003, 5:23pm » |
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:-*I AM NEW TO THE SITE. I AM A 34 FEMALE. I HAVE CHRONIC CH. I AM IN A CYCLE NOW. I HAD A FOUR DAY REMISSION BEFORE THE FIRST SHADOWS STARTED. IT IS GETTING MORE THAN I CAN BEAR SOMETIMES. MY FAMILY TRYS TO HELP, BUT THEY ALSO KNOW THERE IS NOTHING THAT THEY CAN DO. THEY HAVE WATCHED ME SUFFER WITH THIS FOR ABOUT 2 YEARS. BEFORE THE DEMOND INJECTED HIS WAY INTO MY LIFE, I HAD MIGRAINS ALL THE TIME. I WOULD RATHER HAVE THE MIGRAINS. WOULD SOMEONE PLEASE E-MAIL ME. I DESPERATLY NEED SOMEONE ELS TO TALK TO ABOUT THIS.
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Ueli
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Re: LONG TIME CH - NEW HERE
« Reply #6 on: Feb 23rd, 2003, 8:29pm » |
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Hi lorrhaw,
I agree with the others, dump the OTC painkillers and try to fight clusters on two fronts:
The preventative of first choice is Verapamil (at a high enoughf dose).
The only abortives worthwhile trying are oxygen an Imitrex shots.
But the only way oxygen can put a dent to an attack is breathing 100% oxygen through a non-rebreather mask.
But your approach: Quote:| I've been adding liquid oxygen to the water three times a day after reading about that somewhere on here. |
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is not helpfull at all. The only times "oxygenated water" was mentioned here was to debunk it as a shameless scam. IMHO it is of no medical value at all, and for clusters it is about as helpful as Aspirin. The only way oxygen helps a clusterhead is to fill the lungs with pure, undiluted oxygen.
PFNADs
Ueli
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Ueli
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Re: LONG TIME CH - NEW HERE
« Reply #7 on: Feb 24th, 2003, 4:40pm » |
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Added after Terry (wheaties) deleted her post about those horrible "toxins" that poison our body. Of course, she didn't say anything specific about them, only that the wonder product she is selling can get rid of them. But new in the snake oil scene was the notion that the blood cells must, and with the right product can, be cleansed of some (of course undefined) toxins.
Finally she claimed that this miracle stuff cured her husbands CH, and as proof for this she
offered the fact that he hadn't an attack since October.
  ???
This sounds interesting, Terri.
I hope you can help me with a long time question I have. I hear a lot about these toxins, how they accumulate in our body and then give raise to hundreds of ailments, the whole range from a mere irritation to life-threatening diseases. Sadly, nobody could give me up to now a more detailed description, like chemical names, of these toxins, but yet they must be know to people who find or design ways to get rid of them. Otherwise they couldn't discriminate between good stuff we want to keep and these toxins we want to get rid of. As a representative of a reputable company you have certainly learned about the nature of these toxins we ingest daily, could you please let us in on their nature?
It is new to me that even the blood cells accumulate toxins and therefore must be cleansed. But that their cleansing takes several month is a but disappointing, especially in view that the blood cells have a lifetime of only 3 month. But I'm sure, your company can improve on that.
I'm glad to hear that your husband is free of clusters for 3 or 4 month already, and I wish his remission will continue a long time. However, this time span is not unusual for most episodic clusterheads, after a cluster bout of 1 or 2 month they are pain free for the rest of a year or longer. Knowing this fact about the nature of clusters, I am hesitant to attribute a 4 month remission to a wonder treatment to get rid of ill-(or un-)defined toxins, sorry.
Ueli
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| « Last Edit: Feb 27th, 2003, 1:17am by Ueli » |
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cbolony
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Re: LONG TIME CH - NEW HERE
« Reply #8 on: Feb 24th, 2003, 5:28pm » |
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ueli i think your right that he might be in remission.
I been given blood for over 15 years and they tell me my
blood only last 30-40 days before the cells die and your body makes new blood i hope iam right on this one ueli
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BobG
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Re: LONG TIME CH - NEW HERE
« Reply #9 on: Feb 26th, 2003, 8:07am » |
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Nice touch Ueli 
said Bob smirkingly
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Marc
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Re: LONG TIME CH - NEW HERE
« Reply #10 on: Feb 26th, 2003, 9:57am » |
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Ditto to Bob's comment
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