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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> diagnosed yesterday
        
(Message started by: sstelzer on Aug 4^th, 2005, 1:55am)

Title: diagnosed yesterday
Post by sstelzer on Aug 4^th, 2005, 1:55am

Hi everyone,

Isn't technology great, that a day after being diagnosed I can be in the company of a group of experts such as yourselves!

For the last 13 days I have been having once, and now twice daily headaches on my left side, all symptoms consistent with everything I've read about cluster headaches since I was diagnosed with this, which was yesterday. That was the first time I'd ever heard the term 'cluster headache'. I was afraid of a brain tumor or something else, and was actually relieved the doctor wasn't just sending me home with Tylenol or something, since I'd already tried the standard painkillers. After reading about your experiences and realizing this probably isn't going to go away, I almost wish he had said it was a brain tumor.

I'm 34 and this is my first 'cluster,' so I really am a newbie. The doctor really didn't tell me much, just got me a prescription for 6 nasal doses of Imitrex, (and I've already used four of them)! I thought maybe this was a temporary thing, but what I've read is really scary and depressing.

From what I have read here and elsewhere, I have a 20% chance of being chronic, after 13 days it's probably too soon to tell. It also seems that you folks are having clusters that get worse over time. It seems that in 5 years these headaches will be a lot worse than they are now in intensity, and perhaps more frequent. I've read that the pain could get so bad that I'll become suicidal(!)

I am getting one at around 11:30am and the other at 9:30 at night, and from my four nasal doses of Imitrex, I've figured out that so far it helps the 9:30 ones but not at all the daytime ones. At $20 per copay for six doses, it's pretty steep too. Well, it gets debilitating during the day (at work) but nowhere as bad as some of what I've read on these boards, so it only has room to get much worse over the coming years.

Thanks for listening/reading. I hope this doesn't sound too depressed; I'm not so much depressed right now as worried. If I'm wrong about the probably prognosis (ie. getting a lot worse over the years), please someone let me know. Thanks again,

-Scott

Title: Re: diagnosed yesterday
Post by cjc68 on Aug 4^th, 2005, 2:39am

Hello Scott! I may have a little good news for you! You are 34 right? for most of us that are episodic, our cycles will actually get farther apart ( longer remission periods) as we get older. When I was 17 and my cycles first started I would have a cycle once a year for about 2-3 months...this went on until I was about 24, then it moved to every year and half or so...ect. now I am 37 and my last remission period was about 4 years. This is not true for all of us but it is for some of us!
I also had used the initrex spray but later found out that the injections were much better, but eventually you should try other forms of treatment as the imitrex may not be as effective over time! Take Care of yourself Scott!
Chris

Title: Re: diagnosed yesterday
Post by marty on Aug 4^th, 2005, 5:00am

Hi Scott

Sorry to hear that you are one of us.

I am episodic and usually get my cycle very two years or so - this time I am going on three years. My cycles last for 3 - 4 months. Be careful with the triptans and make sure that you do not use more than two doses per day.

I don't know what kind of insurance you have but Kaiser have a really good headache clinic in San Diego and they may have the same program in San Fransisco. There are also alternatives such as Kudzu that you may want to try (just ask your Dr first) and lots of information that you may not have had time to study yet on this web site and on clusterheadaches.org (OUCH).

Also, check out http://calouch.org which is the California chapter of OUCH.

Marty

Title: Re: diagnosed yesterday
Post by jcmquix on Aug 4^th, 2005, 5:34am

Hi Scott...

Nice too meet you, just wish it was under a different reason. I hope that you find the PF days soon.

This site has a wealth of information, the people here although most are not Dr's, gave more all the right info & questions to ask my Nero Dr...

Best advise in the begining is to read all the tips on the left & READ, READ, READ all the other info. Hang around you might find something that helps you..

Welcome again..

PFDAN's to YOU !!!

Title: Re: diagnosed yesterday
Post by Sandy_C on Aug 4^th, 2005, 11:32am

on 08/04/05 at 01:55:06, sstelzer wrote:

I've read that the pain could get so bad that I'll become suicidal(!)

I've never been one for banning or burning any of the printed word, but wherever you read this little gem - BURN IT!
[smiley=mad.gif]

Yes these damn Ch hurt sometimes to the point where you think you might do anything just to make it stop. BUT YOU WON'T! Stick around this board and you will find so many people who have been suffering with this crap for years, and they are fighters! You will be too! >:(

So, enough of this depression - life is too short. If it sounds like I'm mad at you, it's probably because I am right now. But, I won't be for long. Welcome to this group of wonderful people.

Sandy

Title: Re: diagnosed yesterday
Post by sstelzer on Aug 4^th, 2005, 11:34am

Thanks for welcoming me, and thanks, cjc68 for pointing out that it won't necessarily get worse. I was dwelling on some of the worst case scenarios last night when I wrote my 'into' at the start of this thread.

I am lucky, that my pain is not as bad as many others at this point, and that I happened to get diagnosed correctly by a competent physician the first time I sought medical help. I'm also lucky there are groups like this one and OUCH that can advocate for us and support us. I can probably stay in a good mood until 11:30am or so. It'll be my third attempt at stopping the 11:30 express with Imitrex. I'm 0-for-2 on the 11:30 so far, but at least I'm also 2-for-0 on the 9:30pm. I'll let my doc know if this isn't working for my daytime incidents. He mentioned oxygen as a possible treatment, so I think my Kaiser Permamente doc might be a good one to stick with.

Title: Re: diagnosed yesterday
Post by marlinsfan on Aug 4^th, 2005, 12:41pm

Hi Scott, as you have probably read, imitrex is an abortive medicine aimed at aborting the attack when it comes. But it is bad for the heart.

Many of us here have great success with Oxygen. It's safer and for me at least, much cheaper. In fact, I have not taken imitrex since I found this site 2+ months ago, as I've been successful at aborting 100% of my attacks with Oxygen.

In few rare cases when I get them in the daytime, I will chug a lot of strong black coffee (cooled with ice for faster drinking) at the first possible sign of the headache coming on. I've been episodic for 23 years, so I can tell when one is about to hit me. The caffeine most of the times keeps the headache from growing and will kill them. There is a point, however, when coffee is too late and I have to go to Oxygen.

Most of us too take preventative meds, to keep headaches from coming (verapamil seems to be the one of choice) as well as a transitional med which helps while the preventative ramps up. Prednisone seems to be one used widely here for that.

Go back to your doc and get a script for O2 and tell him you want preventative treatments. Read the link on the left on Oxygen. Also, find the chtherapy.pdf file posted in many places around here, and take both to your doc.

As for your suicidal comment, I agree that you should ban it from your vocabulary. I was suicidal briefly about 10 years ago, before i met my wife. Make sure you have a strong supporter, and if you don't yet, lean on us. We're here for you.

Good luck and keep us posted.
Jose

Title: Re: diagnosed yesterday
Post by Highlander on Aug 4^th, 2005, 5:17pm

Hi Scott,

Welcome to CH.com. Sorry you have to be here.

I understand the depression side of this illness, the scary daunting feelings you get when you read the horror stories. the amount of pain your in. But you are in the right place. Other CH'rs are the most welcoming and supporting people I have ever met. The collective knowledge on this site is totally amazing. and you will always get your questions answered and the support you need.

Hang in there the first clusters are the worst (as they are new to you!) Keep posting

Scott

Title: Re: diagnosed yesterday
Post by Kirk on Aug 4^th, 2005, 10:32pm

Hi ya Scott [smiley=smokin.gif]
After 36 years of these littles darlings 5 of them chronic. I have found O2 to be the most consistent abortive, if used correctly. The Stat Dose Imitrex works like a champ, but comes with a heavy load of side effects.
Verapamil and Lithium seem to be the most consistent preventatives.
Read up and take what ya need to the Doc. Please keeps us informed, or just drop in.

Welcome aboard [smiley=smokin.gif]

Title: Re: diagnosed yesterday
Post by bnfreeman on Aug 5^th, 2005, 2:06pm

Hello there! Sorry about the diagnosis. But you are with friends here. There is tons of information here. Most of the people here know more than most doctors, when it comes to clusters. And yes, they do hurt really bad. I have told my husband on many occasions to put me out of my misery! Find a good doc. One that will listen. And go there full of information. Good luck to you!

Brandi

Title: Re: diagnosed yesterday
Post by sassy_lady on Aug 5^th, 2005, 7:17pm

Hello Scott,
Nice to meet you, sorry for this reason though, I'm a supporter of a CH'er, & I know have you feel, I was depressed & mad at the info too, Yet I was very grateful for all the info & support, This site has made a big change in my Family, we feel human again & not alone!!
& the support here is a true Blessing!!
Read, ask ?'s, & read.
Lots of Love & Prayers to You & Yours!!
PFDAN'S TO ALL!!
Jolene

Title: Re: diagnosed yesterday
Post by burnt-toast on Aug 6^th, 2005, 8:46am

By no account am I an expert - just a confused and frustrated suffer that keeps looking for answers.

I am truely sorry that you ended up here and pray that you do not develop chronic symptoms.

Being your first cycle you truely have much to learn about how your nightmare will decide to live within you.
It's going to take a while to understand it.

Keep a good journal and collect informaiton that will help you works with a Doc. and identify the best methods for controlling your attacks.

It's the support you'll get here, not expert advise (not that it's not good advise) that will be most beneficial. The advise is just good ammo for finding and working with an expert.

Good luck on your journey.

Tom

Title: Re: diagnosed yesterday
Post by sandie99 on Aug 6^th, 2005, 12:36pm

Scott,

warm welcome to ch.com! :)

I'm glad that you've found us. :)
Here you can find lots of info about ch. Read and learn more about the "beast". The more you know, the easier the harder times come.

My ch started as episodic and then turned chronic. During that time I've been through feelings of depression but this brilliant lot in here helped me out - and if ch starts to get to you, let us know and we'll do all we can to help you out, too. :)

Welcome!

PF wishes,
Sanna :)

Title: Re: diagnosed yesterday
Post by maffumatt on Aug 7^th, 2005, 10:46am

there isn't much I can say to add to the other replies other than I am glad you found us, pay attention to these people they know what they are talking about. I have learned ,ore here than from any doctor.

Title: Re: diagnosed yesterday
Post by Barry_T_Coles on Aug 17^th, 2005, 9:20pm

Hi Scott

Glad your here but sad that you have to be.

I've been episodic for 5 - 6 years but was only diagnosed just befor Christmas last year, like you I was confused and dissheartened by what I first read but after six months of reading the info and the fantastic support from this group I am now more confident of my future than ever before.

As you get further down the track you will come across people who don't or won't understand your condition, there is a great piece written by Margi ( a supporter ) it's located in the panel to the left cluster traits
print it and give it to your close family and friends, its the most informative plain simple piece of info to explain where we are at and is a lot simpler than struggling through by yourself.

Read-read and read again there is just so much info here to help and they are not all horror stories.

!Oh and this lot have a wicked sense of humor!

Kind Regards
Barry

Title: Re: diagnosed yesterday
Post by BlueMeanie on Aug 18^th, 2005, 2:36am

Welcome Scott,

Try not to get too overwhelmed by the whole CH thing. You'll learn more here than it would take a lifetime of figuring out how to live with the Beast. There is no doubt these things hurt like hell.... you will survive. Glad you found a doc right away to get you started and glad you found us.

Episodic 27 yrs. for me. Went through years of trial and error as most others here have learning the tricks of the trade. One thing for sure, if you drink, you'll learn fast to quit when in cycle. Alcohol is a trigger for most of us. Just about everything else varies from person to person. Check into getting 02 right away.

Good luck and PF vibes heading your way.

Title: Re: diagnosed yesterday
Post by don on Aug 18^th, 2005, 6:34am

Quote:

after 13 days it's probably too soon to tell.

Fraid so. You have another 352 days to go to see if your chronic.

You need not even think about that thougth. Your mission now is to find effective treatment.

Title: Re: diagnosed yesterday
Post by Kevin_M on Aug 18^th, 2005, 9:09am

on 08/04/05 at 12:41:16, marlinsfan wrote:

Many of us here have great success with Oxygen.

Most of us too take preventative meds, to keep headaches from coming

Go back to your doc and get a script for O2 and tell him you want preventative treatments. Jose

If CH diagnosed, get started on a preventative search that works for you, otherwise, a script for trex as much as you would need it wouldn't be a realistic expectation from a doc. Oxygen is great at home and save the trex, if it will work, for on the job.
Remember doctors can alway adjust or change prevents, if it's not effective let him know. I got my trex script upped to more per month during the prevent search, tell the doc they don't stop coming on their own, and they come several times a day, that simply is Ch, and it has important consequences with sleep and job as well as PAIN.
Get prevents, add oxygen or if necessary, hunt for a CH experienced doc. Otherwise there are alternatives on the meds board here too.

Icepacks with the nasal spray help.