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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Glad to have found this web site
        
(Message started by: trayjay on Jun 5^th, 2007, 6:59pm)

Title: Glad to have found this web site
Post by trayjay on Jun 5^th, 2007, 6:59pm

I have had chronic CH since i was 18 and i am almost 34.I have tried so many things like everyone has with little or no results.My cycles lasts 3 to 4 months at a time i have migranes in between cycles so i dont know what a PF day is.I am glad to have found this site,i never heard about oxygen or a few of the other things on here,i go see the doctor on the 12th and am excited to tell her all the info i have learned.I have 3 kids ages 12,11 and have been married for 10 years. I just want relief,i want to work,i want to feel normal,go to the store without the worry of being slammed by another attack.they keep getting worse and i just want to say thank you for this web site.I am sorry that so many people suffer from these but am so happy that I am not alone and there is a place to get informattion.My name is Tracy lol sorry i'm in the middle of a cylce and my nerves are frazzled and my spelling is really bad. take care everyone

Title: Re: Glad to have found this web site
Post by Guiseppi on Jun 5^th, 2007, 7:12pm

Welcome to the nut house! keep reading, when you go to the doctor you will want to be well armed with information. You are actually what we call an episodic sufferer, as opposed to chronics. Chronics don't get the break we episodics get between our cycles!

You will want to discuss a preventative therapy for when you are on cycle. That is a medication you take to reduce the frequency and severity of your attacks. I use lithium at abouyt 1200 mg a day, others use verapamil and topomax. Lots of those for you to read up on. It's unfortunately a lot of trial and error to find the med and the dosage that works for you.

Then you will want an abortive. Something to make it stop hurting when it does hit you. DEMAND OXYGEN!!!!! ;;D After almost 30 years it's still my first line abortive. Cheap, almost no side effects and for me it'll knock a head ache down in 6-8 minutes. You need a high flow regulator, up to 15 LPM, (I'm not sure why but doctors hate that part), with a NON RE BREATHER mask, something that lets in NO OUTSIDE air so you breathe pure oxygen. If you have good insurance or can just afford it Imitrex injectables are my best when all else fails abort. The imitrex pills are generally worthless because they take too long to get into your system. Some have had luck with imitrex nasal sprays, they didn't work for me!

Welcome again to the board, lots more people will be along with more advice. Let us know how the appointment goes!

Guiseppi

Title: Re: Glad to have found this web site
Post by ClusterChuck on Jun 5^th, 2007, 7:19pm

Hi, Tracy and welcome aboard!

First of all, hun, slow down. Stop. Take a breath. OK, exhale. Now take another breath. Exhale. Now just continue doing that for the next 173 years. You WILL survive!

You are home now. We are here for you.

As I always say to people there are three VERY important tools that you need to fight off the beast. They are:
ATTITUDE ATTITUDEand finally ATTITUDE!!!

With a good strong attitude to keep the beast from winning, and to keep the doctors from running roughshod over you, you can cope with the demon!

FIRST, you need to get a prescription for oxygen. It needs to be with a non-rebreathing mask, at a high flow rate of up to 15 LPM (litres per minutes) It is the safest, cheapest, and for most of us, most effective abortive out there. The best mask can be purchased on line from www.clustermasx.com for $25.00 USD. It is designed and distributed by a fellow clusterhead, Ben, in the UK. You should receive it within a few days. It is well worth the cost.

The second abortive to try would be Imitrex injectables. NOT the pills, or the nasal spray. The injectables work fastest. Your neurologist should have some samples that you can try.

Next would be to try to find an abortive that works. Unfortunately that is a LONG trial and error deal. AND some that used to work for you, may not work this time, as the inverse goes, if it didn't work for you in the past, it MAY work for you now. Many times it takes a cocktail of drugs to find your magic silver bullet.

YOU need to read up here, and on the O.U.C.H website, so that YOU know a direction to go. Most of us know more about clusters and their treatment, than our doctors do.

Ok, I am getting to long winded (I am a longwinded old fart) so I will post this, and let others give you hints, too.

Again, welcome HOME!

Chuck

Title: Re: Glad to have found this web site
Post by Wayne on Jun 6^th, 2007, 2:45am

Hi and welcome! I can't give you any better advice than the other guys have apart from to tell you that you may have to educate your doc a bit so be armed when you see him. Secondly if you can find a good preventative it can change your life. Verapamil and Topomax seem to be the most popular but they don't work for everyone.

And take the Redbull suggestion seriously, it sounds daft but it works.

Good luck

Wayne

Title: Re: Glad to have found this web site
Post by trayjay on Jun 6^th, 2007, 3:41pm

Thank you all so much.I have tried verapimil and am on topamax,tried lithium,tegratol,depakote and others.I cant take the imitex injections because they cause chest pains with me. I react weird to medications.the topamax is really messing with cordination,memory and things,i take xanax,she has me taking percocet. i am tired of the meds but will try anything to get them to stop.I am going to see if hubby will get me red bull tonight to try when the next twinge hits. I will demand oxygen,i called and left a message with her nurse today in hopes she will call me back. My attitude does suck right now and i am trying to get in the right frame of mind but i have only one real supporttive friend the husband is sick of them and my kids well they are kids and have been educated as far as what i know about them but doesnt make it easy when mom cant go do something or take them somewhere.thank you guys and i will read read read :)

Title: Re: Glad to have found this web site
Post by Barry_T_Coles on Jun 6^th, 2007, 7:16pm

Hi Tray [smiley=wave.gif]

Title: Re: Glad to have found this web site
Post by Wayne on Jun 7^th, 2007, 1:53am

Hi

The Topomax does make you feel funny, especially at high dosage levels. I found that after a while, once it had built up in my system and was working properly, that I could taper off the dosage to 50mg a day (25mg AM and 25mg PM) and still have the preventative effect without the worst of terrible side effects ie. I could function. Never felt really good on it though but it was very effective and Dopey was definitely easier to deal with than the beast.

Cheers,

Wayne