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Topic: ADVICE NEEDED (Read 315 times) |
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traym4
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ADVICE NEEDED
« on: May 15th, 2003, 2:01am » |
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HELLO,
MY HUSBAND HAS BEEN SUFFERING WITH CUSTER HEADACHES ABOUT 2 YEARS NOW. THE FIRST ONE HE HAD I WAS SCARED TO DEATH. WE HAD NO IDEA WHAT WAS GOING ON. I THEN FOUND INFO ON THIS SITE AND DIAGNOSED HIM MYSELF AND THEN BROUGHT HIM TO THE DOCTOR. HIS PRIMARY PRETTY MUCH TOLD US THAT THERE WAS NOTHING HE COULD DO. SOMETIMES I WONDER WHY THE HELL THEY WENT TO MEDICAL SCHOOL!!!!! WE HAVE FINALLY FOUND A GOOD HEADACHED DOC AFTER 2 YEARS BUT WITH NO GREAT RESULTS. HE HAS TRIED AMERGE 2X A DAILY, OXYGEN, DEPAKOTE. HE IS CURRENLY ON VERAPAMIL 240MG, METHERGINE .06MG, ZONEGRAN 200MG, & ARISTICORT 12MG. STILL NOT WORKING!!!!!! THIS CYCLE HE IS CURRENTLY IN IS THE WORST ONE YET !!!!! I DIDN'T THINK THEY COULD GET ANY WORSE. I JUST SO HELPLESS AND BAD FOR HIM. I AM CONSUMED WITH FINDING SOMETHING THAT WILL HELP HIM ONLINE, WHICH TOTALLY FRUSTRATES HIM. HE HAS PRETTY MUCH GIVEN UP ON FEELING NORMAL AGAIN, BUT I JUST CAN'T GIVE UP. HE GETS ATTACKS ALL DAY LONG, LITTLE OR NO SLEEP AT NIGHT. HAS ANY ONE OUT HAD ANY LUCK WITH ANYTHING?????? MEDS, SURGERIES????
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brain_cramps
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Re: ADVICE NEEDED
« Reply #1 on: May 15th, 2003, 2:14am » |
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Hi TRAYM4:
Can you do us a favor and turn your CAPS-LOCK off?  (Also, do you and your husband have names?)
You definately found the right place to ask these questions. While I can't offer a lot of advice on which meds to take (only those not to take  ), stick around and I'm sure you and your husband will get some answers. Like everyone here knows, there is no 'magic pill' that works for everyone, but I'm sure you will get A LOT of suggestions.
Has your husband tried o2?
While you're waiting for answers, read, read, read and then read some more.
Also, this is a bunch of the best people you'll find anywhere. Oh... and their collective knowledge about CH is unbelievable.
PFDAN,
grant 
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| « Last Edit: May 15th, 2003, 10:16am by brain_cramps » |
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TerryS
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Re: ADVICE NEEDED
« Reply #2 on: May 15th, 2003, 2:21am » |
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Well I don't know your, but it makes no differants. I have been on most of the meds you have mentioned. I know of no meds that will take away a cluster headache and keep it away. I have had clusters for over 30 years. I'm sorry but there just isn't any cure yet. We just learn to deal with the pain and then go on with our lives. I wish there was more!
Sending you and your husband good thoughts and prayers.
TerryS
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cathy
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Re: ADVICE NEEDED
« Reply #3 on: May 15th, 2003, 2:56am » |
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Hi traym4
Welcome to the site, sorry you had to seek us out, my husband has tried various meds over the years, the only relief he has found is from Imigran/Imitrex, these usually kick in after about 20mins. He also now has O2.
I hope your husband finds something to help soon, in the meantime, sending your husband pf vibes.
Cathy
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traym4
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Re: ADVICE NEEDED
« Reply #4 on: May 15th, 2003, 3:38am » |
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he has tried 02 which did not work. but thanks anyway. i know there is no miracle cure. he is taking these drugs which are not helping at all. so in the mean time while these docs have him on these meds he is loosing weight and having side effects. it would be worth it if they were even helping just a little. i don't know what to do.
thanks,
Tracey & Vince
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Jackie
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Re: ADVICE NEEDED
« Reply #5 on: May 15th, 2003, 6:44am » |
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Tracey,
My husband, Blake, is a clusterhead so I kinda know how you are feeling.....helpless.....but you really aren't...not totally. There are things you can do to support him. The best thing you are doing right now is trying to help find something that gives him some relief.
A few questions.....has he done a prednisone taper..
has he tried a higher does of verapamil in combination with lithium (this works for some)? You mentioned Amerge....taking one of these at bedtime might hold him through the night. The oxygen might be worth trying again...it's very important that it is used correctly with a high flow rate. Blake does imitrex injections but the Zomig holds him much longer. Try to keep him on as good a schedule as you can....eating is important. An empty tank can't go. There are lots of "home remedies" that can give some relief....cold air (A/C) blowing directly into the face, ice packs, cold or hot showers, strenuous exercise at onset, hot packs. Come on gang....what have we forgotten....oh, and hot strong coffee.
Good luck to you....this is a good bunch and will help you the best they can.
Jacks
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Peppermint
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Re: ADVICE NEEDED
« Reply #6 on: May 15th, 2003, 7:32am » |
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Welcome Tracy & Vince. I hope there are some PF days coming soon, sounds like a bad time right now.
Jacks you pretty much covered it all that I can see!
One thing that might be helpful as far as Oxygen is concerned....please read this, it may make a difference whether it works to abort a cluster or not...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
lots of work from a great group compiled the all-you-need-to-know, right from this board.
Good Luck & let us know how it goes!
Peppermint
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When playing in the gym, beware of steel beams. - M. Amyx
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FYI - I am NOT a clusterhead.
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CJohnson
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Re: ADVICE NEEDED
« Reply #7 on: May 15th, 2003, 8:29am » |
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Here is the routine I employ to keep things bearable.
1. The moment I feel it coming on I irrigate the sinus on the pain side with water from an ordinary nasal spray bottle which I keep in the fridge.
2. I drink a glass of cold water.
3. I go jogging/running trying not to think about anything except filling my lungs with air.
It is important for me to start this routine as soon as I feel it coming on. There can be no hesitation, no sitting, wondering how bad this one is going to be. It has become like an automatic reaction for me. This routine limits the severity to about k-7 and the duration to about 15 min., give or take a few.
The likelihood of this approach working for someone other than me is slim, but it may be worth trying. Just about everyone will agree that the sooner you attack the pain, the less severe the attack will become.
I hope the 2 of you discover your formula for success soon.
-Curtis
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stevek
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Re: ADVICE NEEDED
« Reply #8 on: May 15th, 2003, 9:23am » |
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Tracy and Vince,
I’m sorry that you are having such a bad time. I don’t know about all the meds in your current cocktail but verapamil at 240 mg was useless for me. At 480mg it is working well. Definitely check the O2 site Peppermint listed. Doctors not familiar with CHs usually prescribe flow rates that are too low.
Take Care, SteveK
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Mark C
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Re: ADVICE NEEDED
« Reply #9 on: May 15th, 2003, 9:50am » |
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Welcome to the board...sorry you need us. Sounds like you have already been through the wringer on this one. Clusterheadaches suck....no one will argue that. The desperation is common, frustration leads to almost a panic situation for me.
Things are much better for Clusterheads than just a few years ago, mostly because of this site educating both doctors and Clusterheads.
I will attach a favorite link to help get you started. Dont give up on the O2, it must be administered correctly. Get yourselves to a neurologist who is familer with CH. Print information from this site and the OUCH site.....information is power. Good luck,
PFDAN's
Mark
http://www.clusterheadaches.org/library/general/index.htm
http://www.clusterheadaches.org/medications.htm
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Bob_Johnson
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Re: ADVICE NEEDED
« Reply #10 on: May 15th, 2003, 10:20am » |
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Suggest you get one of these books and get a quick education. If you are limited to a doc with little experience with complex headache, you can use the book to educate him also.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Roxy
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Re: ADVICE NEEDED
« Reply #11 on: May 15th, 2003, 10:25am » |
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Hi Tracey (and Vince),
Welcome to the board! I hope some of the information you read and learn will be of some help to you. You sound like a great supporter for you husband, I wish all the ch'ers spouses were as concerned and caring as you. You say Vince has been having these for two years, does this mean cycles for two years, or is he chronic? Sometimes that does make a difference in the treatment.
I can't really give you much more information than everyone up above has already given. I can repeat the good old 02 statement. It usually works wonderfully.....if used correctly. That is the biggie. You don't say if he has ever tried Imitrex. I know you are looking for a preventative too, but he should really try trex as an abortive.
I hope you find something soon that will help him....just don't give up.
I really like your name too, very nice!! ;D
Good luck,
Tracey
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Virginia
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Re: ADVICE NEEDED
« Reply #12 on: May 15th, 2003, 11:41am » |
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Tracy & Vince,
Welcome to the board. I totally understand how you are feeling. I've been at the end of my rope many times over the past 18 years with these things. The first year that I went chronic, the depression just overwhelmed my life. I never thought I'd get through that time in my life. But I did and this board helped me a lot. I still haven't found the magic combination for me yet (but a lot of that has to do with no insurance). But at least now I have hope that I will find something that will help me. Please take a look at the meds section of the board too...there are a lot of natural things that people are trying as well.
The only thing that I can add is to try the water therapy...check ou the "water X 3" button on the left.
I started drinking a gallon of water a day last fall and it has really help limit my KIP 10's.
Good luck and keep reading,
Virginia
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Big Dan
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Re: ADVICE NEEDED
« Reply #13 on: May 15th, 2003, 12:41pm » |
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Hey, glad you found the board.... but sorry you needed to....
... you should make sure that the O2 administration is being done correctly for one... maybe you two are going about it the wrong way... and that could have little or no effect on the Demon....
... and be willing to travel, sometimes great distances, to find a doctor that really understands what's going on in your husbands cursed head....
Tell him to hang in there, and fight the bastard dirty style...
-Big Dan
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cootie
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Re: ADVICE NEEDED
« Reply #14 on: May 15th, 2003, 1:56pm » |
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Hi traym4....I am also a supporter of about 20 years.....it was over a year after they started b-4 Brad got 'started' on the rite track with a doc and got a proper diagnoses. He started on imitrex and verapimil.....when he doesn't take the correct amount of verapimil he gets shadows all day long which happen'd last cycle. Oxygen didn't work for him but then I don't think he was useing it properly.....he will next time cuz there are sum experts in that field on here to set us straight. Jonny could help with that. It's a rough road when the cycles start I know.....no sleep and all that goes with it and meds with there side effects. So far he only wants to stick with the meds that have worked....he's afraid to try anything new and risk being groggy or foggy at work cuz that could be dangerous in his field. Hang in there and if you need anything let me know !Stick around.......Supporter rough roadie Pam
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