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Topic: New reader, 22 year veteran of CH (Read 586 times) |
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dizzyd
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New reader, 22 year veteran of CH
« on: Jan 29th, 2003, 8:54am » |
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Hello everyone,
I happen to be trying to find some "new" cure on the internet for a this old monster and came across this website. I am a 43 female who has been suffering from cluster headaches for 22 years. I live in the Boston area and am looking for sufferes in this area to communicate with. I have tried everything there is to appease the beast and unfortuantely I am one of those that can not find a medication that works. I started with Verapmil but it caused my heart to have problems at the high dosages, lithium caused my blood pressure to drop so low that I needed to be in-patient for a week, and so the story goes on and on for 22 years. I had some luck with Sansert on and off but the problem I had with that was that the dosage needed to be constantly increased to keep working until I was taking such a high dosage that I my doctor was giving me ultrasounds on my heart to make sure their was no scar tissue building on the valves. In any case once you go on the "holiday" you are stuck again trying to find another rememdy.
I forgot to say I started off episodic and became chronic over the last 3 years. I have periods where the ch are stronger and uncontrollable and periods or episodes where they are just about uncontrollable, nothing at all works.
Which brings me to today. I am at my wits end. I was on Oxygen last night on and off for about 3 hours trying to abort a ch. Usually it works but last night no way. I swear lately these ch are out of contrl, so strong and powerful, nothing diminishes them. I am on Topamax presently (joke, does not work, I feel ill all the time) and my doctor will not give me imitrex or any of those other ones because I smoke. She is extremely conservative and is afraid I will have some sort of reaction and have a heart attack or something due to the verapamil reaction 20 years ago!!
Anyway, 22 years of dealing with this, I have never met anyone with cluster headaches, I have never been able to talk to anyone with them and it feels good to finally "talk" to someone who knows and understand.
I have so much history, so much to share but too much too write all at once. Thanks to DJ for founding this site and thanks to all who share in it, I spent 5 hours reading yesterday instead of working!!
One question, is anyone else having a bad episode this winter??? Do you have clusters that are worse than others?? Last longer than others??
I appreciate any and all input!
DizzyD -- Dawn
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Bob_Johnson
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Re: New reader, 22 year veteran of CH
« Reply #1 on: Jan 29th, 2003, 9:45am » |
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Glad you found us! Welcome.
First, watch the oxygen: too much (100%) is bad for the brain, eyes, and lungs. Second, your doc may be too conservative re. Imitrex, etc. unless you have a clear history of heart disease/problems. The safety literature is encouraging on this issue, i.e., quite safe unless a clear history. Ask her to more fully explain her reservations about using. Third, I've had good success using Zyprexa, 5mg, as an abortive. Ask her about a trial.
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Bob Johnson
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MadMan
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Re: New reader, 22 year veteran of CH
« Reply #2 on: Jan 29th, 2003, 10:18am » |
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Welcome, I too am new to the site , but am a long time CH sufferer at 42. I like you am on Topomax. Have been on it for a year at ever increasing doses. At 1st it worked like a dream & no side affects (50mg) But the Beast burned through after 6 months so the MD upped to 100mg still no sides & the Beast went away again. Well the Beast came back Christmas Eve, & he brought his bags this time. upped the Topo. to 300mg & still getting mild to Moderate attacks up to 4 times a day. A K-10 every now & then.
And am starting to see side effects to boot. Ya gotta love our lives.
btw I'm James glad to meet ya.
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What Me Worry
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Tony_M
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Re: New reader, 22 year veteran of CH
« Reply #3 on: Jan 29th, 2003, 11:45am » |
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Boy this is a depressing forum you know? If only 99% of our friends and family realized what we go through. It is amazing the suffering that goes on.
Welcome from another newbie. Get a new doctor. Change doctors until you find someone that knows what he/she is doing and is willing to work with you.
Lastly, can someone explain the dangers of oxygen? I never heard it could be dangerous to brain, eyes and lungs?
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JDH
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Re: New reader, 22 year veteran of CH
« Reply #4 on: Jan 29th, 2003, 12:07pm » |
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Hi dizzyd and welcome.
The ha's I'm having in this current cycle don't seem to be any stronger BUT this cycle has gone on longer than any I've ever had.
It sounds like your Dr might be a little too conservative to be treating CH. I realize there are safety issues with certain meds but that's always been a non-factor for me.
I'd much rather take the risk rather than to deal with the pain that comes with CH's.
If you're not happy with your current Dr, keep looking around until you find someone who understands CH's, it has made a big difference in my life.
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cbolony
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Re: New reader, 22 year veteran of CH
« Reply #5 on: Jan 29th, 2003, 12:53pm » |
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Hello Dizzyd I smoke and use imitrex injection . They can cause you a heart attack if you have a heart problem all ready. Ask your doctor about imitrex 20 mg nasal spray takes about 15-20 mins. to kick in or the 50 mg pill about 30-40 mins.I take the injection because it takes about 10 mins.By some chance the dr. gives you the injection make sure you read the imitrex tip on the left side it will help you save the injection.My name is charles 49 live in port chester,ny
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dizzyd
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Re: New reader, 22 year veteran of CH
« Reply #6 on: Jan 29th, 2003, 2:09pm » |
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Thank you everyone for your responses. I have spent all morning again today on this site printing out all sorts of information to take to my doc next week so hopefully she will begin to prescribe something that will work for me.
She is constantly pushing for me to stop smoking before trying any of the imtrex type medications..........it is driving me crazy, not for nothing but smoking is about all I have left. I am in so much pain almost all of the time, the shadows are always there and after 22 years I know the triggers for me, sometimes cold, sometimes heat, some smells, some foods, whatever..........cluster headaches have a mind of thier own. In the early days they came right on schedule like clockwork now they just come no matter what and when they do I have 5-10 minutes to prepare tops.............
I do worry about the constant intake of oxygen, my nose hurts constantly, scabs and runs alternatively........I have resorted to taken
alot excedrin migraine tablets which work on the "milder" ch but when the major ones roll around nothing at all helps, now I swear the lining of stomache is gone and I am getting rebound headaches from the excedrin..........one problem to the next, but never never do the clusters go away, if they did they could have my stomache!
I am depressed guys, how many more years of this crap can I take, when it is going to stop. Since December 21st I have been in constant agony, afraid to lay my head down to sleep.................rephrase WHAT IS SLEEP??
Anyway, you all know what I am going through so my tale is not one that you do not know.
I will just keep reading and waiting and hoping that someday this curse will be lifted again. For those who go into remission, enjoy that moment...............I wish I could have that back again.
Take care all.
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Roxy
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Re: New reader, 22 year veteran of CH
« Reply #7 on: Jan 29th, 2003, 2:13pm » |
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Hi Dawn....and welcome 
I'm female, 45, smoker, with a history of heart disease in the family.....and I love imitrex. My doctor had no qualms about prescribing it....but, I have started working out everyday (just to try and negate any heart trouble early). I actually think the exercise might be helping with the ch's.....but, maybe not....it's hard to tell what affects them. They have a mind of their own.
Wish I was in the Boston area......I'd buy you lunch. Unfortunately, Texas is a little far away.
Nice to meet you.....stay in touch,
Tracey
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domm
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Re: New reader, 22 year veteran of CH
« Reply #8 on: Jan 29th, 2003, 9:03pm » |
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Dawn - welcome to clusterville. Your neuro sounds way too conservative for my taste. When I get hammered, I want relief - now. I want something I know works, available to me.
After you've presented all the stuff from this site, if he / she still persists in being overly cautious, I'd work on finding a new doc.
Hope you find the right set of stuff that works for you and please keep us posted
PFDANs
domm
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Ted
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Re: New reader, 22 year veteran of CH
« Reply #9 on: Jan 29th, 2003, 9:22pm » |
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Hi Dawn. I'm in Massachusetts too, though not the Boston area. I, too, am chronic and the only abortive that works for me is O2. Sometimes it doesn't do anything and sometimes -- frequently -- it'll be a miracle for me. I also haven't had good luck with preventatives doctor's prescribe. Where I have found luck is with mushrooms (lots of info around here on those). I went from a year of a non-stop heavy cycle to a light cycle. And when it would gear up again towards a heavy cycle I'd do more and go back to a light cycle. Something to think about.
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BobG
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Re: New reader, 22 year veteran of CH
« Reply #10 on: Feb 1st, 2003, 3:09am » |
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Welcome to the board dizzydawn.
Does your O2 set-up have a bottle to add moisture to the oxygen? It might help with the sore nose.
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dizzyd
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Re: New reader, 22 year veteran of CH
« Reply #11 on: Feb 1st, 2003, 6:15pm » |
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Hello Bob G and hello to everyone else on this thread, I hope you all are still reading this,
I am sorry I haven't responded in a few days but I have been so very ill..................emergency room sick! I had a cluster Wednesday night that would not go away, started at 12:00 AM and never ever let up.......10AM on Thursday I finally had my husband take me to ER.
I have been on recovery since then. Feeling a bit better, clusters have finally eased up a bit but have not gone away. I started up on an old script of Sansert I had in the house. I know that I can not get a refill but until I see my doctor on Wednesday, I have to have to something and she will not prescribe anything on the phone.
Anyway in regards to the oxygen. I do not have any sort or "bubbler" or "nebulizer" or moisture attactment. I was told when I first started using the oxygen many many years ago - at least 15 years ago that it had to be a DRY mask............tell me has this changed??? Because if so I could definitely use the moisture.
When I was in the ER, the doctors were questioning the scabs in my nose and I was in too much pain to understand why or what they were impling...........finally after they called my doctor and was told about my "oxygen therapy" they gave me a shot of morphine......with a stern warning that "oxygen is a drug and should be disclosed at time of exam" , I think they thought I was a cocaine addict.............arggggggg!!
Enough fo this crap, where are the miracle cures, treatments and drugs for cluster headaches???? I have had enough of the pain and ignorance of the medical profession, bosses and friends and family who are tired of hearing it.
Anyway, signing off.............
DizzyD-Dawn
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tommyD
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Re: New reader, 22 year veteran of CH
« Reply #12 on: Feb 2nd, 2003, 6:52am » |
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Dawn...
No miracle cures. No one has ever developed a drug specifically as a treatment for clusters. Closest thing to a miracle for a lot of us is what Ted mentions -- mushrooms, or "shroom therapy," but it only seems like magic. It takes research, careful planning and effort, and it's not for everyone. Big drawback: it's illegal. Big advantage: it works.
For more info check out these websites:
Clusterbusters FAQ: http://home.attbi.com/~rwold350/
Clusterbusters web site: http://www.geocities.com/ClusterBusters2002/
From what you said about your doc, it sounds like she isn't likely to endorse shrooms as treatment. All I can say is, read the info. Particularly check out the archives of messages from this board -- three years of treatment reports and discussions Ueli (thanks again Ueli!) collected and put on the geocities website.
Good luck. Hope you get pain free soon.
-tommyD
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jonny
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Re: New reader, 22 year veteran of CH
« Reply #14 on: Feb 2nd, 2003, 10:26am » |
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on Feb 1st, 2003, 6:15pm, dizzyd wrote:
Anyway in regards to the oxygen. I do not have any sort or "bubbler" or "nebulizer" or moisture attactment. I was told when I first started using the oxygen many many years ago - at least 15 years ago that it had to be a DRY mask............tell me has this changed??? Because if so I could definitely use the moisture |
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Hi Dawn,
A water bubbler makes a big difference, no more dry throat and nose. You can get one at a med supply store for $3-4......Believe me there is a diff!!
Seems im just down the southeast expressway from you, im in Weymouth......drop me an e-mail if you like.
BTW: 27 year chronic and im only 40, hows that for a kick in the ass.....LOL
............................jonny
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das
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Re: New reader, 22 year veteran of CH
« Reply #15 on: Feb 4th, 2003, 4:47pm » |
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Hi Dawn,
I concur with Ted. Try the shroom treatment. It works for me. I have been a chronic CH sufferer for 11 years and I have been med free for a little over a year now. By med free I'm talkin no meds at all!!
When I does, I take so little that I don't feel the effects of the drug. Usually 1/2 g does it...
Good luck.
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dizzyd
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Re: New reader, 22 year veteran of CH
« Reply #16 on: Feb 4th, 2003, 6:49pm » |
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Hello Everyone,
I am off to the doctors tomorrow and I am very very nervous about my appointment. I have printed out all kinds of information from this website to take with me and I am afraid my doc may not take it very well but I feel like I have to give it a shot.
I am in a bad way and I need some relief and I need it quickly...........I usually responded well to Sansert but from reading all the postings I understand it is off the market.............can all you sansert takers tell me what has your doc prescribed instead...........???Has anyone gotten it from Canada or UK and if so what is the cost??
Also from reading all the postings about Imitrex and Zomig I am bit nervous about the side effects with the chest tightening and feeling like having a heart attack, etc..........what are the side effects of Maxalt??
Any help would be appreciated!
Thanks,
Dawn
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