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jenny134

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Help
Nov 8^th, 2010 at 10:58am

My last day was awful! Does anything actually work for the pain??? I'm on a prednisone taper and verapamil. I see that a lot of people take lithium, but I can't... My oxygen is always ready to go...I live in fear of the next dose of pain and I'm afraid. Yes the oxygen diffently cuts down the time of the attack, But the pain is unbearable? I feel completely defeated! Cry

Please any advise?
Jenny

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his wife

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Re: Help
Reply #1 - Nov 8^th, 2010 at 11:42am

At work, just a quick post as I'm concerned about you. Make sure you're using your O2 correctly...you need a NON-REBREATHER mask. One with a bag with no outside air..if you can't find one locally look at the CH store. In the meantime make sure you cover any holes in your mask when you inhale. How high does your regulator go?..make sure if Rx is up to 25, they gave you a reg that size (my hubby had an Rx up to 15...months passed by until I took a closer look and it only went up to 8). Try melatonin before bed for night hits...search and you can find dosage..most go 10 -15 mg an hour before bed. Slam down a redbull energy drink as soon as you feel a hit coming on. Talk to your doc about an Rx for imitrex inject. You don't mention that in your meds. Please post what your taking on Pred, Verap (dosage, etc..)

Gotta go...hang tough!

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Re: Help
Reply #2 - Nov 8^th, 2010 at 11:52am

i get attacked at work and i drive a semi truck. the inactivity of sitting behind the wheel is a trigger. it is extremely terrifying. best i can do is reach for the o2 and get pulled over as quick as i can. sometimes i can push thru but not often. used to wake up to an attack when i was sleeping in the rest areas and truck stops. im surprised no body ever called the cops on me. im sure they could hear me screaming outside the truck

edited to add: i second everything his wife just said. the high flow is a must. if you cant get a 15 or 25 lmp reg then look around on the internet. HIGH FLOW REGULATOR IS A MUST!

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« Last Edit: Nov 8^th, 2010 at 11:57am by -johnny- »

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Chris H

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Re: Help
Reply #3 - Nov 8^th, 2010 at 3:36pm

Jenny, I hope you're doing better. Agree with everything said above. You need a good "abortive", which can be oxygen if used at the first signs of an attack or something like an Imitrex injection or nasal spray (Triptans). Red Bull sometimes works for me.

Either way, there will be times when you just can't get to them and need some ways to get through. I use a cool damp towel on my face and head, sometimes ice or frozen peas. I also use deep breathing techniques and meditation techniques. These things don't make it go away, but at least get you focusing on something other than the pain.

I hope you feel better soon. -Chris

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mikstudie CH.com Old Timer Offline Beastmaster Posts: 284 Westland Mi. Gender:	Re: Help Reply #4 - Nov 8^th, 2010 at 4:14pm How long have you been on the Pred.? It takes a few days. The Melatonin works great for me and many others for night time hits. The Red Bull works well for me too at the first sigh of a hit. I dont have any expiereance with the 02 yet but from what all say here it has to be done correctly or it is useless.Read the oxygen info at the left.
Back to top	IT'S JUST A HEADACHE,TAKE TWO ASPRIN AND GO TO BED!!! IP Logged

jenny134

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Re: Help
Reply #5 - Nov 9^th, 2010 at 5:50am

Been on the prednisone for about 5 days, 80mg then i begin to taper by 5 mg a day... verapamil just started up to 120er daily...tried imitrex before with no relief also maxalt, been on countless muscle relaxers and none really have had an effect.

I left out before that I have Epilepsy usually nocturnal episodes, but have been seizure free for almost a year now. So there are some meds I just can't take because they interfere with my seizure meds..Diffinetly going to get the melatonin and give it a try. I normally have a b/p reading of 100/58, so they don't want to give me to much of the verapramil. I got the right equip. for the oxygen and the right mask, How long should I stay on the oxygen????

Thank you all for the info its been a great help to me!!!
Jenny

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wimsey1

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Re: Help
Reply #6 - Nov 9^th, 2010 at 8:00am

Having another condition on top of CHs really complicates things, doesn't it? As you know, many of the meds we take are antiepileptic. You need to talk with your dr about this, and see if there is the possibility of adding something you haven't yet tried (depakote, topamax, dilantin, etc, just guessing here) which might do double duty for seizures and CHs. Is your dr fully conversant in headache therapy, and CHs in particular? If not, you need to begin educating your doc ASAP. Praying for you, and for a pain free life. Blessings. lance

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Charlie

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Re: Help
Reply #7 - Nov 9^th, 2010 at 9:23am

Quote:

I left out before that I have Epilepsy usually nocturnal episodes, but have been seizure free for almost a year now.

Me too. Mine aren't just nocturnal and I still have complex partial, I guess. I've taken all kinds of anti-seizure drugs for the last 51 years, none of them very successful, but not useless either. My CH has been gone for about 19 years so anything I take now doesn't get in the way. I'm on Lamictal this last decade. I recognize the ones you use. Topamax was the best anti-seizure drug I ever tried but it made me nuts. The side-effects aren't worth it.

Good luck with both horrors!

Charlie

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Agostino Leyre CH.com Sponsor Offline "Hit like a phillips head into my brain." Posts: 3803 Madison WI USA Gender:	Re: Help Reply #8 - Nov 9^th, 2010 at 3:32pm jenny134 wrote on Nov 9^th, 2010 at 5:50am: How long should I stay on the oxygen???? Until the pain goes completely away.
Back to top	Triptans cause increased number of hits and increased intensity. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.&& IP Logged

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wimsey1

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Re: Help
Reply #9 - Nov 10^th, 2010 at 7:59am

Agostino Leyre wrote on Nov 9^th, 2010 at 3:32pm:

jenny134 wrote on Nov 9^th, 2010 at 5:50am:

How long should I stay on the oxygen????

Until the pain goes completely away.

And search Batch's posts. He has a technique for achieving a quicker abort through hyperoxia and alkalosis and while it's kinda hard breathing, it works. Cuts abort times in half. And don't forget to keep breathing the O2 after it aborts for 5 minutes or so. That helps to abort rebounds it seems. Blessings! lance

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Callico

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Re: Help
Reply #10 - Nov 10^th, 2010 at 12:33pm

With already low blood pressure I doubt you will be able to get Verap high enough to be effective. Ask your Dr about adding Lithium. Don't know about its reaction with Epilepsy, so talk it out with him well. A number of people here have had success with combining it with Verap.

An alternative to Verap and Lithium would be Kudzu. I don't think it has any issues with blood pressure, nor do I know about interactions with your other meds, but it has been very effective for me. I have an idea he will be leery of it as it is an over the counter type herbal and won't have a lot of medical literature available, so you will have to make your own decision, but don't try it without talking it out with him first.

Jerry

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« Last Edit: Nov 10^th, 2010 at 12:35pm by Callico »

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miCHel

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Re: Help
Reply #11 - Nov 11^th, 2010 at 5:31pm

Hi Jenny,

First of all, hang in there, IT WILL PASS!

I do not know if you can take Imitrex injections with epilepsy but I think you should talk to your doctor about it. It is truly magical for me: 3-4 minutes and I am totally pain free. Everytime.

You might also want to check your Verapamil dosage with your doctor. I know a lot of people here take much more than 120mg per day (including me).

But in both cases, talk to your doc first!

And please, please, please repeat after me: It will pass, it will pass, it will pass.

Best of luck.

miCHel

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jenny134

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Re: Help
Reply #12 - Nov 13^th, 2010 at 8:37am

Thanks All!!
I'm trying everything and all the info is great!! Can't take Lithium and have tried the imitrex!!! The o2 seems to be my saving grace!!! I did have 2 solid nights of sleep and it was beautiful, But yesterday it returned with a vengeance.. I'll try anything!!!!
I would also like to add that all of you have been absolutely wonderful, I feel like no one else gets it but you and I'm sorry you all Have to suffer Cry

. I feel a bit lost at times , But just knowing that someone else understands, makes it a bit better!
I worry about my family, cause I see them worrying about me! I think my husband is afraid to leave me alone, and my poor son just is to young to understand. It has been really hard for me to keep it together over the last few months.. I'm tired of crying, I'm tired of the pain, and I'm tired mostly of explaining to some people whom just will never get it.
I've never prayed so much in my life. So with much love and respect to all of you and all of the help!
I would be lost without you!
Jenny

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