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kelkel789

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First time here! SO happy to find this site!
Nov 20^th, 2009 at 5:11am

Hey All!

Kelly here. Just found this site for the first time....THANK GOD!!!!!! I wish I had found this a year ago with my first attacks. My first attacks were so debilitating, I thought I was dying or thought for sure I had a tumor or something of the sort. After lumbar punctures, many different doctors and many different meds and so many trips to the E.R. I was finally diagnosed at a headache clinic. I suffered for about a year and they fianlly went away (after gaining nearly 30 lbs from being on Lithium).
I was so thankful to not be in the DEMONS pessesion anymore. I was scared daily that they would come back.

They did not untill... two weeks ago. I am so frustrated with this whole CH deal!! I was seriuosly hoping I would be one of the few cases that had a one time spell (so much for wishful thinking)!
I am now back at the HA Clinic and I am abot to go back to ocipital nerve blocks and try a new med (topamax).

Has anyone had luck on Topamax?

Long story short I am so very happy to have found this site and people to talk to!

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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: First time here! SO happy to find this site! Reply #1 - Nov 20^th, 2009 at 6:35am kelkel789 wrote on Nov 20^th, 2009 at 5:11am: ...so debilitating, ... finally diagnosed at a headache clinic. Can be a circuitous route to headache specializing, identifying, correct treatment. Year's a long cycle, any abortives, like oxygen?
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BarbaraD

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Hugs to ya

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Re: First time here! SO happy to find this site!
Reply #2 - Nov 20^th, 2009 at 9:49am

I've been on topamax for about 10+ years and it's been my miracle drug. BUT I take the whole dose (100mg is my maintenance dose) at NIGHT before bed and have never had the side effects that others suffer from. If you get "dopey" you might try this regardless of what the directions say. It's kept me sane for the most part (don't listen to what others tell you about that part Wink

). I'm chronic so I take it year round.

O2 is my abortative. High doses of this (at least 15-25 liters per minute) with a non-rebreater mask (the one at the ch.com store is better - check it out). I use a demand valve, but they are expensive. Read the O2 info on the left for the proper usage to get the best results.

Sorry you have to be here, but glad you found us. We're a good bunch of folks - most of us anyhow - a few nuts in the house Grin

but they're good folks, just a little screwy in the head (like Chuckles).

Stick around, ask questions, vent, whatever you need - we're here...

Hugs BD Kiss

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What don't kill ya, Makes ya stronger!

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Linda_Howell

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Re: First time here! SO happy to find this site!
Reply #3 - Nov 20^th, 2009 at 11:33am

Hello and welcome. I'm so glad you typed Cluster headaches in a search engine and found us. Feel free to ask any questions you might have.

As far as the Topamax is concerned I want you to be fully informed, so I found a site for you to read that has some testimonies by users of this drug. I personally was on it for a while and the side-effects scared me. There are other drugs you can take besides this one.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Linda

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Hurt people.....hurt people. Think about it.

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Guiseppi

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Re: First time here! SO happy to find this site!
Reply #4 - Nov 20^th, 2009 at 11:45am

You mentioned you had been on lithium......was it effective? Or did it stop working and that's why you're going to try the topomax? Reason I ask is lithium has been my prevent for many years now and still works great. I'm episodic, male, 49, I take 1200 mg a day while on cycle.

As others have mentioned, if you haven't looked into oxygen, read the link on the left, oxygen info, and give it a try. I can stop an attack completely in less then 10 minutes by huffing the 02. Been a miracle abortive for many, certainly worth a try. Welcome home.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bstrong CH.com Newbie Offline Posts: 18 x0\|Sandstone\|USA\|\|0\|0\|MN,Minnesota Gender:	Re: First time here! SO happy to find this site! Reply #5 - Nov 20^th, 2009 at 1:18pm Hi Kelly, You definately did find the right place. It's nice to have people that know what you're going through. I've had these for 17 yrs, and still have questions about them. I found O2 a year and half ago because of this site. It is my miracle!! abortive method.
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Skullcrusher CH.com Junior Offline I'm Tired of Hurting! Posts: 48 Guelph,Ontario, Canada Gender:	Re: First time here! SO happy to find this site! Reply #6 - Nov 20^th, 2009 at 3:24pm Yes, I tried topamax.... It didn't do much for me. Good luck with it.
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Charlie

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Jamestown, NY
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Re: First time here! SO happy to find this site!
Reply #7 - Nov 20^th, 2009 at 3:45pm

Welcome aboard but I'm sorry it has to be because of this horror. You'll find a lot of good information here.

Like Linda, I didn't handle Topamax well.....Too bad as I was using it for epilepsy and it was the best drug ever. I'm hoping you have better luck than I. After you build it up, give it a chance and the best of luck!

Charlie

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There is nothing more satisfying than being shot at without result---Winston Churchill

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kelkel789

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Re: First time here! SO happy to find this site!
Reply #8 - Nov 20^th, 2009 at 11:11pm

Hey Guys, Thank you for all of the welcoming!!
Yes I have tried 100% o2 for several months (I also work in the medical field so I always had it available even at work).
Honestly it did not do anything for me. I still have the tanks at home. I am happy that so many of you have found a good method with the o2!

The lithium did work but what a powerful med (no one wants to be on that) I gained a lot of weight between the lithium and the prednisone, not a god thing when I have an issue with my weight anyways. I am hoping the Topamax will work along with the nerve blocks and imitrex injections.
will work. A few people I have talked to have lost a bit of weight with the Topamax. If they do not seem to work for me I will go back to the Lithium and try another med to counter act the weight gain.

I am looking forward to interacting with all of you and gaining as much knowledge as I can from this web site. Ok I am off to check out some links and more info! Thanks again for the comments and advice!

Have a good weekend!

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catlind

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Re: First time here! SO happy to find this site!
Reply #9 - Nov 21^st, 2009 at 8:52am

Welcome to the site, wish you didn't have to be here, but glad you found us.

I tried the topomax and had good luck with it for helping with the head, however, I like to give the medical field a hard time and was one of those very rare individuals that suffered a secondary glaucoma from it. My son however takes it for episodic CH (I'm Chronic) and he has really good luck with only 25 mg. Mind you he's only 17 so there's a big difference there with meds.

You may want to try out an O2ptimask, you truly need to have 100% O2 with no ambient air and at a high flow rate (some use up to 45 lpm) before you can really say it isn't effective. I hope you consider it!

I'm one of those that was considered to be an imitrex rebound and caused to go chronic. The specialist even wrote it up that way on my diagnostic/treatment plan letter. Please watch how much you use it, as it definitely can aggravate CH and many many people here have had that happen.

Regardless of what treatment you choose to use, you are pretty much guaranteed to find folks here who have tried it or that use it. There is information here that you can truly only get here from a group of other sufferers.

Hope you find your magic combo and have a huge (like decades) pain free remission!

Cat

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Jrcox CH.com Veteran Offline I Love CH.com! Posts: 123 FARMINGTON, MN Gender:	Re: First time here! SO happy to find this site! Reply #10 - Nov 22^nd, 2009 at 11:06pm welcome , welcome, welcome PFDAN
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