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Diagnosed with CH (sad face) (Read 1543 times)
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Diagnosed with CH (sad face)
May 9th, 2010 at 9:13pm
 
Hello everyone, I have been diagnosed with CH, and have been suffering with them for about 4 years now with no relief. After being diagnosed with a sinus infection time after time after time, to no avail, I decided to see an ENT.
After the ENT did all of the testing & found nothing wrong, sinus wise, he set me up an appointment with a neurologist.
After describing my symptoms, he said I was a classic case of a CH sufferer. Sad
He has prescribed me Depakote er 500mg/daily & imitrex(pill form)
Can anyone tell me anything positive about the Depakote? I have read a lot of bad side effects & such with  this particular med. I have only been taking it now for about 4 days, and, (thank god) am winding down the end of my cycle. Smiley I explained to my neurologist that I suffer with extreme anxiety, and feel that sometimes I think this may trigger them.?.? anyone else?

I want to also add that finding this site was a godsend for me. It is a great feeling to know I am not alone in this pain & by reading some of the other posts, it seems I have some very courageous fighters on my side.
TIA
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Racer1_NC
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Re: Diagnosed with CH (sad face)
Reply #1 - May 9th, 2010 at 9:38pm
 
Hi and welcome!

Others will be alone and no doubt comment on the Depakote, I can not since I have no experience with it.

I do however have experience with O2 as an abortive. Check out the O2 link on the left hand side, you'll be glad you did.

Bill
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“We see what we believe, not the other way around." — Varga
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Re: Diagnosed with CH (sad face)
Reply #2 - May 9th, 2010 at 9:59pm
 
Thanks Bill. My neurologist mentioned something about the oxygen as well. After checking around on this site it seems to be a very popular abortive.

Strange thing about CH for me is this. When the pain is not in full throttle mode, it can be very easy to forget how severe it is. My "shadows" have been somewhat decreasing since early march, and are somewhat tolerable for me at this point, and have been controlled with otc pain meds.
In Febuary, when the beast began, I would have killed to have an oxygen tank on hand. The ONLY mild relief I would find would be some sort of antihistamine or afrin(on the affected side) so it wouldn't be a bad ideal to try and seek one before my next attack.
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Guiseppi
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Re: Diagnosed with CH (sad face)
Reply #3 - May 9th, 2010 at 10:32pm
 
When you are off cycle, do not forget the beast! Because make no mistake, he will not forget you!

Get your oxygen prescription now. Depending on where you live you have to renew it every 12 months. On or off cycle, I have a garage full of E-tanks, and currently have 3 regulators, just in case one should stop working. Once you abort an attack with 02, you will never be without it.

The pill form of imitrex is not very effective for CH. The pain ratchets up too fast. You have to wait for the med to get absorbed by your tummy and into your blood stream. By then you're banging your head on the wall. That's another advantage to the oxygen, it is so fast acting. I use imitrex injectables when I'm caught away from my 02.

Anxiety as a trigger. That's a funny one. For many, they try to stay tense and up at all times. As soon as they relax, wam they get hit. Others, like me and sounds like maybe you, prolonged stress will actually bring on an attack.

I have never taken depakote. I've had great luck using lithium as my prevent for many years now. Verapamil is also quite popular here. Glad you found us. Do not drop the ball not. Read all you can here, get your med situation figured out and get your oxygen!

Joe
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bejeeber
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Re: Diagnosed with CH (sad face)
Reply #4 - May 9th, 2010 at 11:54pm
 
Glad to see you're getting some great advice here right off the bat!

As far as anxiety being a possible trigger for an attack when in the midst of an episode, absolutely.

Please stick around, do a ton of researching here, and acquire a beast killing arsenal to be ready with next time Mr. CH comes to town. Treat HIM to a surpise counterattack that'll send him reeling.  Cool
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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wimsey1
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Re: Diagnosed with CH (sad face)
Reply #5 - May 10th, 2010 at 8:23am
 
I have used Depakote; to no good effect. But everyone is different. I know we keep saying that almost to the point of triviality, but it is still true. Try it. If it works, great! If it doesn't, ditch it and try another preventative. For now, your list of potentials is quite long and it's just a matter of working through them until you do find one that works. It is now your avocation!

As to almost forgetting the beast. I agree, don't! It won't forget you. Your body cannot "recall" pain. There are no cellular pain memories. Our mind can. But our cells do not. So there is a tendency to let the memory diminish--it is a part of our self-defense mechanisms. Resist this to the point you remain prepared at all times. If you wind up not needing your preparation, again GReat!! Better to have your arsenal full. Blessings!
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Re: Diagnosed with CH (sad face)
Reply #6 - May 10th, 2010 at 5:20pm
 
Thanks for all the replies guys. I find comfort in knowing I can depend on tried & tested individuals who can relate to this thing.
I'm not sure how long it will take before I know an absolute answer as far as the depakote goes. I assume if I get an attack in the next few months, it will be worthless to me. Considering my cycle has been gaining steam over the past 5 yrs or so. I went from just 5:30 hits to 11:30am AND 5:30pm hits this past year. To the point of crying like a baby. (I'm a 34 yr old man btw) You guys know how helpless you can feel when all you can do is look to the sky and ask "why me?"
That said, my heart goes out to the ones who suffer from the night time attacks. The ones where you are afraid to go to sleep at night. My god I can't imagine.
I hope to get in touch with my neurologist & possibly get a prescription for some 02 shortly, IF that's possible, i'm not sure if that covered under insurance. As that seems to be my best bet.
Fwiw, I already feel better with the new family I have found here, and look forward to getting to know everyone a little better. Cheers & stay cluster free.
Vince
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Re: Diagnosed with CH (sad face)
Reply #7 - May 10th, 2010 at 6:37pm
 
Quote:

The pill form of imitrex is not very effective for CH. The pain ratchets up too fast. You have to wait for the med to get absorbed by your tummy and into your blood stream. By then you're banging your head on the wall.



Joe, Is it possible to abort an attack if you were to take the imitrex an hour or so before it hits? Most of mine are almost like clockwork, and was hoping I could get a "jumpstart" if you know what I mean.
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Re: Diagnosed with CH (sad face)
Reply #8 - May 11th, 2010 at 9:40am
 
Yes. Someone...I forget who....said that was how they used their pill form of trex. They know they get hit at say 7:00 every night, so they'd take their trex pill at 6:15.

AS far as the oxygen goes, even if insurance will not cover it, it is inexpensive. Mine wouldn't cover it for years. Bought a regulator off of E-bay..my wife just grabbed another one for $20 off E-bay so I'd have a spare. A re breather mask is another $20. The E=tanks rent for about $4-5 a month and are about $12-15 each refill.

Joe
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AdoreInVegas
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Re: Diagnosed with CH (sad face)
Reply #9 - May 11th, 2010 at 12:37pm
 
Hubby has been on Depakote for about 2 months now. He takes 1,500 mg at night. That, along with Verapamil 240 mg three time a day (not the extended release, the regular as recommended by the fine folks here) have kept him pain-free for 8 days straight for the first time since last October.

Took him awhile to get used to the Depakote. When he took it during the day it made him dopey as hell. When he first started taking it at night he would get up around 2 or 3 am with a serious case of the munchies, and would be groggy most of the morning. Now, he's sleeping through the night and able to function during the day, pain-free. He has five E-tanks at home, one E-tank in his truck, an Optimask, and Sumavel injectors in both our vehicles. I need to post a huge thank you to the members here for all the great suggestions and advise because he wouldn't be pain-free for this long without them!!!

He also has some mild issues with anxiety that have come about from the CH, not necessarily the medications.
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« Last Edit: May 11th, 2010 at 1:25pm by AdoreInVegas »  

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