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        Cluster Headache Help and Support >> Getting to Know Ya >> Hi, I'm Ross
        
(Message started by: EcStAsY on Apr 17^th, 2008, 5:30pm)

Title: Hi, I'm Ross
Post by EcStAsY on Apr 17^th, 2008, 5:30pm

Hello all. My name is Ross/ Ecstasy.

I'm 18 years old and have never had a headache in my life.

For the past month, I have had 3 or more CH attacks every single day.
I typically wake up every morning around 3 or 4 am, crying in pain. As that subsides, one usually starts to come on around noon-late afternoon, and then one around dinner time.
I went to the ER about 3 weeks ago, and have been seeing a Neurologist since then. I've been on multiple medications and not much has really worked.
The most relief I have got is from Frova.

Since I know when they typically come on, I know to turn out the lights, grab a cup of ice water, take some BC powder, a Frova, and grab a cold towel; the fun is just about to begin.
I'm also taking Depacote, I don't know how much that is working.

Anyways, just wanted to introduce myself and my case, as I am sure I am now joining a long road of CH. Awesome.

edit: I forgot to mention, for the attacks that make me feel suicidal/ ER, I have the Imitrex injectables, and they usually work in 5 minutes and are amazing.

Title: Re: Hi, I'm Ross
Post by Guiseppi on Apr 17^th, 2008, 6:34pm

Welcome to the board, glad to hear you're seeing the neuro, that'll open a lot more treatment options. I'm 48 now, mine started at about 18 too. Scares the shit outta you at first don't it? ;)

That being said, start reading EVERYTHING on this board. No knock on doctors but your typical neuro won't see a single case of CH his whole career so they rarely know much about them. Read the oxygen link on the left hand side of this board. Pure oxygen, at a high flow rate, at least 15 LPM, using a non re breather mask, should be your first line of defense. I can be completely pain free in as little as 10 minutes using just the oxygen.

The oxygen thing will start to sound like a broken record around here, so many people have had great success with it. For now, try slamming an energy drink as soon as you feel one coming on. Monster, Rock Star, any containing the combination of caffeine and taurine. Many can abort or at least really reduce an attack that way. Frozen peas held against the affected side of your head will bring some relief also.

Welcome to your new second home, we'll help you any way we can.

Guiseppi

Title: Re: Hi, I'm Ross
Post by Superdave on Apr 17^th, 2008, 6:50pm

Welcome Ross

What Guiseppi said the redbull and o2 are a gift from God and so is this website

Read Read Read ......... You'll get control of your ch soon
and live happily ever after :)

Superdave

Title: Re: Hi, I'm Ross
Post by mezza on Apr 17^th, 2008, 7:52pm

Hi Ross- welcome ! glad you found the site- you'll get a lot of validation and support here- Sorry to hear you are having such a hard time

I have used frova too- good long lasting abortive! I too have used imitrex injectables- they are pretty darn quick in terms of relief ( pretty tough the first time though to jab yourself-) i can't tell the anxiety i went thru the first time i needed to inject myself- I am quite a pro now -

definitely read all you can on this site- there is great information from those that have suffered from CH and lots of good info about what has worked well for folks. Glad to hear you have a neuro and that he/she at least seems to have a clue-

feel free to ask questions and vent too- :)

kelly

Title: Re: Hi, I'm Ross
Post by EcStAsY on Apr 17^th, 2008, 9:25pm

on 04/17/08 at 19:52:35, mezza wrote:

Haha yea I can't even explain what its like to stick yourself, moreover, to hold a needle in for 10 seconds!

Thanks for the advice guys. I'm actually an avid energy drink "drinker" but since I've been so "out of it" recently, I've slipped out of my craze. I'll try a Red Bull next time a CH comes on.

Time to start reading up about Oxygen!

Title: Re: Hi, I'm Ross
Post by Guiseppi on Apr 17^th, 2008, 10:28pm

It's that broken record I warned you about...oxygen!!!!!

Guiseppi

Title: Re: Hi, I'm Ross
Post by Redd on Apr 17^th, 2008, 10:43pm

Check out the trex tip on the left hand link list. Rather than a full 6 ML stat dose shot ask about getting vials and insulin needles to break down the dose to 1/2 or 1/3.

That way you don't have to get to the suicidal stage before you inject.

Also...O2...first sign of an attack for abortive action. Safe, 70% effectve (give or take) and not as hard on the heart as trex.

Title: Re: Hi, I'm Ross
Post by RichardN on Apr 18^th, 2008, 12:41am

Welcome to Clusterville Ross

And yes . . . another vote for 02. I can't use Imitrex . . . so 02 is my only abortive, and if used early-on can abort in minutes.

Have you identified any triggers? For most of us (including me), alcohol is a major trigger. Exhaust fumes, chemical odors, . . . there was a recent post from someone who identified cedar as a trigger for him.

If you're not already, start a headache journal. Note the time, duration, pain level (read "the kip scale" . . . link on left), and take this with you (and a copy of the Kip scale) when next you see your doc.

Make sure you copy the 02 info here and take to your doc. You need a prescription that specifies 12-15 lpm through a non-rebreather mask as needed. Most here use the 02 first and, for the hits the 02 doesn't reach . . . use the injectible Imitrex.

Read, read read . . . and ask any questions you might have.

Be Safe, PFDANs

Richard

Title: Re: Hi, I'm Ross
Post by Callico on Apr 19^th, 2008, 5:39pm

Welcome aboard! I'll second Guiseppi's advice, with the addition to please lay off the BC powder. It will do nothing for the CH other than let you feel you are doing something. All it will do is give an ulcer and cause liver/kidney damage.

Read, read, read, then ask questions of anything you don't understand. You will find more, and more up to date, info here than in 99% of the Drs offices around this country.

Jerry

Title: Re: Hi, I'm Ross
Post by darknight on Apr 22^nd, 2008, 9:02am

Welcome Ross,

I see you've already had the warm introduction 02 02 02!!

Well not wanting to dissapoint people i started 02 in Feb and since then ive not had an attack worth making note, the min i feel it im on the 02 and within 10-20mins on the rate advised ive aborted, i also have imigran injectors but ive never had to use them as yet. Before 02 i was taking tablets that didnt even touch the sides and for 2 years (im episodic) every 6 months id have the attacks and had to put up with them but not now!!!!

I hope you find something for relief and that 02 does it for you if not dont worry the experts on here have many a option for you to try and are happy to help!!!

PFD to you all !!!! ;)

Title: Re: Hi, I'm Ross
Post by DennisM1045 on Apr 22^nd, 2008, 2:23pm

Hi Ross and welcome!

The one thing I'll add to what has already been suggested is that Frova is the slowest acting triptan there is. It can take three hours to become effective. By that time the beast will have already taken root and it may not be that effective.

Sumatriptan injections/nasal spray, Zomig nasal spray are much more effective triptans.

Having said that, O2 works best for me.

Good luck...

-Dennis-

Title: Re: Hi, I'm Ross
Post by LeLimey on Apr 22^nd, 2008, 5:48pm

Ross I use Frova and I've found a really good tip from other users is to either take it with a hot drink like coffee (or tea 'cos I'm a Brit!) or with a fizzy drink like Coke. Both help it act faster. I've heard others who have said they chew them but I've never been able to bring myself to do that!

I love Frova because of the very long half life, it's the longest of all triptans and can last up to 26 hours. 17 hours was my longest on it but who would knock that?! You can still take 2 doses in 24 hours as with other triptans too.

I realise you probably know this but I thought I'd mention it anyway for the benefit of other's reading.

Welcome to the site!!

Title: Re: Hi, I'm Ross
Post by LeLimey on Apr 22^nd, 2008, 5:52pm

I should explain how I use Frova. Knowing it CAN take up to two hours to kick in I take it BEFORE an attack is due. IE if I'm going to bed at 10pm I would take one at 8pm to ensure a whole nights sleep. I do not use it as an abortive, I use it as a preventative and stop the piggin' rotten things coming in the first place!

I too can't recommend O2 enough. I can abort an attack in 5-7 minutes if I jump to the O2 fast enough which is even better than Imitrex.

Also with red bull, the trick is to chug it as fast as you can as soon as you can. I find it helpful to keep it cold and this is one time you do not want to be graceful! You chug that like you've been in the sahara for a week!! I never buy "Red Bull" itself either as it's so expensive. Generic brands work every bit as well, just check they contain caffeine AND taurine as it's the taurine that turbo boosts the caffeine!

Hope it helps!!

Title: Re: Hi, I'm Ross
Post by CostaRicaKris on Apr 22^nd, 2008, 11:23pm

on 04/22/08 at 17:48:05, LeLimey wrote:

or with a fizzy drink like Coke.

God I miss when Coke tasted fizzy (pre Topomax)

I'll beat the dead horse. O2 and energy drinks. Two most effective weapons I have against the beast. Imitrex is third.

Welcome Ross.

Title: Re: Hi, I'm Ross
Post by darknight on Apr 23^rd, 2008, 8:15am

Hi Costa,

God I miss when Coke tasted fizzy (pre Topomax) ?

I dont understand what you mean.

Title: Re: Hi, I'm Ross
Post by CostaRicaKris on Apr 23^rd, 2008, 8:50am

Do you take Topomax?

A common side effect is carbonated beverages taste flat.
It's the wierdest thing.

Title: Re: Hi, I'm Ross
Post by darknight on Apr 23^rd, 2008, 10:07am

Very strange, thanks for clearing that up!

I dont take topomax, i have 02 that so far aborts every attack and i have the injectors (imigran) as back up that thankfully i havent used as yet! Before that i was taking maxalt ibuprofen paracetamol.

;)

Title: Re: Hi, I'm Ross
Post by deltadarlin on Apr 27^th, 2008, 10:03am

Be careful with the BC powders. They are an analgesic and can cause rebound headaches, not to mention eating holes in your stomach.

'darlin