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CH Supporter HELP! (Read 3965 times)
bettytinks
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CH Supporter HELP!
Jun 26th, 2008 at 2:48pm
 
Hello my husband was just diagnosed 3 weeks ago with CH. He has had them all his life even as a young boy in Cuba. When I met him his mother had no idea what to do for him and I have been the one taking him to different Dr.s and such fighting for a diagnosis/cure. He has been through an ENT surgeon and even had surgery to remove a deviated septum looking for a cure. It helped for about a week and then the beast came back. That's when we went to yet another Nurologist. The first one thought he was crazy and was only concerned why he wasn't working at the time @@. Anyway, this new Dr. is the one who diagnosed him with it. I had researched throuhg your site before on this so was some what familiar with the beast. We are now going on our 4th month of pain. He FINALLY has O2 and is taking Imitrex tablets 100mg and has already run out of those. (I don't understand why they only bring 9!!) The Dr. sent him 5 samples of a new med called Treximet. It's Imitrex and Naproxen. Dosn't help as much. Maube because the Imitrex is only 85mg ??? The Dr. gave him a steroid to take for 6 days Methylprodnisolone or something like that and Verapamil. My husband is terrified to take either. Before the Dr.s would prescribe Furinol which does SOMETIMES help with what I see you call as shadow headaches.

I'm turning to you all for support and advice now. Our whole house has been turned upside down for 4 months this year. Our 3 year old son is afraid of his daddy. My MIL who also lives with us is becomming depressed and I worry about her too. I'm trying so hard to stay strong because I know I am know help if I'm weak. I try to help when I can and make his life as comfortable as much as possible.

He's starting to scare me though because he's talking about suicide and how he can't wait for death to come. I'm so worried!
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thebbz
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Re: CH Supporter HELP!
Reply #1 - Jun 26th, 2008 at 2:55pm
 
Rethink the Verapamil. It works for many. Quit using the trex for a preventative. Its an abortive. Pain meds are not a CH treatment.
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 Hopefully you can use the 02 and caffeine for most of the hits. Save the trex for the bad ones. The 02 has to be administered properly. You need 100% 02, no air other than that. Use a Non rebreather and tape the openings on the nose piece shut.
Ask more questions and stick around you'll be glad you did.,
Try to get him on here, we'll work on the attitude. Relax your doing very well. Like I said rethink the prednisone/verapamil, after 36 hours on the prednisone the headaches will stop. Then the verap should kick in by the time you taper off the pred. Thats the goal anyway.
all the best
thebb
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« Last Edit: Jun 26th, 2008 at 2:59pm by N/A »  
 
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Bob Johnson
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Re: CH Supporter HELP!
Reply #2 - Jun 26th, 2008 at 6:15pm
 
Print out the first link. It lists the current medical practice on treating CH. I'd make a copy for the neurologist for, in all honesty, he is not coming across as a doctor who is up to date on treating headache. (And that is not unusual in our experience!)

Explore the Michigan center article in the second link and also explore the OUCH site (buttons on the left). Much good material to get you to some basic information. Try and stay calm and do your learning before you jump to conclusions.

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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« Last Edit: Jun 26th, 2008 at 6:17pm by Bob Johnson »  

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bettytinks
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Re: CH Supporter HELP!
Reply #3 - Jun 26th, 2008 at 6:33pm
 
Well the Dr. did offer to him the Imitrex Injectable but my husband again refused it. He is afraid of needles and will not inject himself. I feel helpless because he keeps refusing meds.
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DennisM1045
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Re: CH Supporter HELP!
Reply #4 - Jun 26th, 2008 at 8:05pm
 
Hi Betty,

I'm so sorry the beast has your life turned inside out right now.  Just know that you are doing all the right things.  Thank you for being there for my brother in pain.

Oxygen is a great way to go.  No needles, no side effects.  But it is still only an abortive and will not prevent the HAs from coming.  That's the job of a preventative medication.

I sounds like his Dr knows his stuff.  IMO, your husband really needs to reconsider the prednesone taper and the Verapamil.  Verapamil blocked 90% of my hits last cycle.  For those it works for, it's amazing stuff.

On Imitrex injections, I too was initially afraid of the needles.  They do not go into the muscle, only just under the skin and really don't hurt if you hold still. 

Once I successfully aborted my first headache, completely pain free in about 10 minutes, I quickly forgot about the inconvenience of giving myself an injection.

Maybe you could give it to him?

Good luck and let us know how we can help...

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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Charlie
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Re: CH Supporter HELP!
Reply #5 - Jun 26th, 2008 at 10:02pm
 
Welcome aboard and I'm sorry things have gotten so out of hand but you will find good ideas all over the place here.  I wanted you let you know of a technique that worked very well for me. In any case, it's harmless. Good luck:

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      
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There is nothing more satisfying than being shot at without result---Winston Churchill
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kevmd
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Re: CH Supporter HELP!
Reply #6 - Jun 27th, 2008 at 11:43am
 
tough love time.....Your husband must over come his fears of needles and other medication.  Verapamil is very effective for alot of people as are the injections.  It really doesn't hurt and it is much better than a CH.  Your husband has ALOT of options better than suicide.  Get his rear end on this site.  We can help him and support him.  Alot of us have had the same thoughts.  They are understandable but must be overcome.  I have a 3 year old as well and couldn't bare the thought of not see him again.  You are doing great and I suggest you keep your son a safe distant from his Daddy when he is having an attack.  I do believe things will start getting better now that he has o2.  Hang in there, keep coming back and tell him to get on here.  This is the only place where people truly understand what he is going through
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PHILADELPHIA PHILLIES 2008 WORLD CHAMPS
 
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thebbz
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Re: CH Supporter HELP!
Reply #7 - Jun 27th, 2008 at 11:53am
 
Glad to hear he is taking the Verap.
If one has the means to alleviate the pain and does not take it. The pain becomes self inflicted. NO pity.

What it took was you to kick his ass. Maybe a more thorough ass kicking will make him listen to the doc. Eventually the ass kicking the beast is dealing out will make him listen. The result is the same. Pain free time and sleep. Kiss
Behind every man....... Smiley
thebb
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Guiseppi
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Re: CH Supporter HELP!
Reply #8 - Jun 27th, 2008 at 1:19pm
 
We men can be stubborn asses at times, no question there! Thank you so much for being the supporter you are. I am terrified of needles, if I had to inject myself I don't know if I could, even for a real slammer. The trex stat dose looks like a ball point pen, you never see the needle. Just hold it against your bums and press the button. Certainly worth a shot.

And thanks for doing all the leg work for him, like BZZZ said, behind every good man is a woman like you, thanks.

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Bob Johnson
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Re: CH Supporter HELP!
Reply #9 - Jun 27th, 2008 at 2:50pm
 
This med is in a pill form, to avoid the needle, and will abort a cluster in 20-min or less. The doc can give you a sample to try; you will know with 1-2 doses whether it works for your husband.
=======
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.



--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
 
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Peppermint
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Re: CH Supporter HELP!
Reply #10 - Jun 27th, 2008 at 2:55pm
 
bettytinks wrote on Jun 26th, 2008 at 6:33pm:
Well the Dr. did offer to him the Imitrex Injectable but my husband again refused it. He is afraid of needles and will not inject himself. I feel helpless because he keeps refusing meds.


Hi Betty..

Please check your private messages.  Look at the top of this page, on the left side.  It will say "Good afternooon Bettytinks, you have ___ new messages."  Click on the number and it will take you to your private messages. 

hasta luego,
Pepp
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bettytinks
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Re: CH Supporter HELP!
Reply #11 - Jun 27th, 2008 at 5:15pm
 
Thanks Everyone for your support! It feels good to know we are not alone!

Bob I'm copying the med you posted and taking it to the Dr,s with us on Monday!

THANK YOU THANK YOU THANK YOU! Grin
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Re: CH Supporter HELP!
Reply #12 - Jun 27th, 2008 at 6:53pm
 
Betty,

I've had these headaches for 26 years. I am starting week 6 of one of the worst cycles I can remember. I tried prednisone for the first time as a HA treatment yesterday. Coincidence or not, I have not had anything more than minor shadows since taking the steroids. I don't know what will happen when my I finish the taper of prednisone (11 days), but the last 35 painfree hours have been a god send. I will be sending good karma to you and yours.

Drew
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bettytinks
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Re: CH Supporter HELP!
Reply #13 - Jun 28th, 2008 at 12:51am
 
I will be prying for you too Drew!  Smiley
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Re: CH Supporter HELP!
Reply #14 - Jun 28th, 2008 at 7:53am
 
Hi Betty,

i'm new here as well, and struggling with the same problems as you are. But maybe there's one thing i can suggest to you, and that is to inject the imitrex to your husband yourself. My husband is affraid to do it himself so i do it for him every time. It's really easy to do, and you would do anything to relieve him of the pain, wouldn't you.

good luck, and hang in there. Diede Smiley
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bettytinks
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Re: CH Supporter HELP!
Reply #15 - Jun 28th, 2008 at 11:00pm
 
I have no problem injecting him. I use to inject my grandma with her insulin all the time growing up. She was going blind and couldn't see to fill the needles. The problem is getting him to accept reciving him.

SInce he started the Verapamil FINALLY, he has only been getting the shadows. I have noticed around 2am though he will still have to use his O2 though but not for very long. 2 whole nights of uninterupted sleep has been AWESOME!!!  Grin
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