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Topic: Help Me! (Read 414 times) |
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twoyeartorture
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I am a new member. My clusters hit every 2 years starting in October and ending in February. I am an odd one, because I am female and have been told this is rare. It all started upteen years ago when I fell and hit the back of my head on an iron claw tub. Since then, I have been plagued with this horrible condition. I am on eggshells right noe in anticipation of the next cycle (this October). I have tried EVERY freakin' medication possible, including the preventative. The only thing that helps is a combo of DHE, Demoral and Compazine. Which of course I can only get in the ER. So for several months every 2 years, my poor boyfriend takes me to the ER every night for months. He goes to work with no sleep. Has anyone had the surgery?
I have numerous other health problems, non-rem narcolepsy and going through tests for Lupus, Firbromylagia and such.
I could use some guidance. I am terrified this October, my season, will push me over the edge.
No religious comments please.
Amy
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| « Last Edit: Sep 6th, 2005, 8:31pm by twoyeartorture » |
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E-Double
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Re: Help Me!
« Reply #1 on: Sep 6th, 2005, 8:52pm » |
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This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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lionsound
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breathe
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Re: Help Me!
« Reply #2 on: Sep 6th, 2005, 9:20pm » |
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Hi Amy,
Do you see a neurologist for your CH?
Maybe it's time to do that using the above info Eric provided and get some scripts for at least O2 and some preventative meds to try.
Going to the ER all the time isn't fun. Have they ever given you oxygen while in the ER?
read , read, read and ask questions if you have them. We will try to help.
welcome! 
-lionsound
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twoyeartorture
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Re: Help Me!
« Reply #3 on: Sep 6th, 2005, 9:23pm » |
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Hi Eric-
Thanks for your input. I have tried the O2 and Zyprexa, along with numerous others listed on the site. Nothing seems to work.
I'll check into the melatonin, I have fallen into a deep depression with all the other conditions I have been going through.
Thanks again.
Amy
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twoyeartorture
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Re: Help Me!
« Reply #4 on: Sep 6th, 2005, 9:29pm » |
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Hi Lionsound-
Thanks for your input. I have seen several neurologists. One of them said there was no such thing as cluster migraines! Another gave me strong tylenol. And the third was really trying to help. I had the O2 tank at home which worked for 2 days. Same as all the drugs I've tried. They work for 2 or 3 days and then thats it. I stay away from alcohol, nictotine and preservatives and still wake up at 11:00pm in torture.
Amy
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E-Double
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Re: Help Me!
« Reply #5 on: Sep 6th, 2005, 9:40pm » |
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How were you using the meds?
If DHE works for ya, how about Migranal?
It's a DHE spray
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| « Last Edit: Sep 6th, 2005, 9:42pm by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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lionsound
CH.com Alumnus
New Board Hall of Famer
breathe
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Re: Help Me!
« Reply #6 on: Sep 6th, 2005, 9:48pm » |
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I've tried lots of meds...for HA and sleep and Melatonin really helped my nights..I was pleasantly surprised. One sdie effect is depression, but I didn't find that to be true even when I was depressed.
Amy, be sure to check your PM's
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Kate in Oz
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Re: Help Me!
« Reply #7 on: Sep 8th, 2005, 7:25am » |
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Hey Amy,
Sorry to hear you're having a hard time of it .... I can totally relate to your fear ... I'm a newbie here too and it really helps to get some support from people who understand!! Even just reading the boards is helpful. Gives you the strength needed to carry on.
Interested that you say you're having tests for fibromyalgia cos I've got that too and have wondered if there was a link ?? Be interested to hear how you go with that.
Wishing you all the best, take good care,
Kate
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KMT
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Re: Help Me!
« Reply #8 on: Sep 8th, 2005, 8:53am » |
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Amy
Welcome to the family. Really am sorry that the beast choose to inflicted you as well. There are plenty of women here that are afflicted with the beast so you aren't alone.
This sight has tons of information and you are exposed to numerous people who have battled the beast for years that have many tips and ideas that can help....
Quote:| combo of DHE, Demoral and Compazine. |
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Was the Demoral and injection? Didn't that combo bring on a lot of sleep? (Ipassed out for 24 hours with Demoral injection but woke through out night screaming and then passing out again)
Do you still have the O2? May not work all but may for some hits. Thats always my 1st step unless at school then imitrex is all I have.
Welcome again and read read read.....Take E-doubles information and Lionsounds advise and see a Nero...
PFDAN.......Kim
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aka...................................................... KimY
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twoyeartorture
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Re: Help Me!
« Reply #9 on: Sep 10th, 2005, 11:15pm » |
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I'll let you know, I have a follow up next week. He tested for everything. There is still a possibilty of Lupus.
I have not found any info linking the fibro the the clusters, however I have found studies that state most cluster sufferers have a sleep disorder. If you have never been tested fot that, it can be a start. If you have sleep apnea and get treatment, you can aleviate yourself from the clusters.
I just found a new neurologist that suggested Botox treatment. Has anyone had that?
Amy
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FrankF
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New Board Old Timer
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Re: Help Me!
« Reply #10 on: Sep 10th, 2005, 11:46pm » |
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I have a couple of questions...
When you tried O2 was it using a non-rebreather mask... and flow rate 6 or more liters per minute? Many doctors prescribe 2-4 liters per minute... and the O2 delivery people give you a canulla (two tubes up the nose) or which doesn't do shit except blow air up your nose... or a partial face mask (almost as bad).
When you tried Imitrex... was it tablets or injections? It has been my experience that injections work everytime in about 6-7 minutes... but tablets NEVER work (by the time they dissolve and get into my system the attack is over).
Best of luck to you. I am currently trying to find a new doctor who even knows what a cluster headache is.
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unsolved1
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Botox has not been shown to be an effective treatment for cluster headaches.
Goodluck Amy ~
UNsolved
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