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        Cluster Headache Help and Support >> Cluster Headache Specific >> I'm Scared!
        
(Message started by: rachkim on May 4^th, 2006, 3:30pm)

Title: I'm Scared!
Post by rachkim on May 4^th, 2006, 3:30pm

Hi everyone! I have looked at this site for two days trying to make up my mind if I wanted to post or not. I guess posting is hard because it makes my condition so. I went to the doctor and was diagnosed with CH. I have an appointment with the Neuologist on May 10th. I am kinda afraid that I have a tumor. I know I probably don't but if I tried to imagine what having one would feel like it would be the pain I am in now. I am almost 24 years old (B-day May 21st) and am married and have a set of twins (a year and a half old). These "attacks" started about 3 months ago. They have just gotten bad lately. I had 6 attacks yesterday and live in fear of my next one. I tried Imitrex nasal spray yesterday and it didn't help at all...besides it drained down and was disgusting. This morning I took Advil Migraine after my first attack this morning (I wake up with one) and I didn't have another attack till it wore off around @2:00 p.m. I know you are not supposed to medicate all of the time because you can get rebound headaches but I am desprate. Is medicating with this medication really that bad?? Should I stop? I would appreciate any help you can give me. It is nice to know that other people understand what I am going through. Thank you so much. You are all in my prayers! ;;D

Title: Re: I'm Scared!
Post by thomas on May 4^th, 2006, 3:33pm

We eat excedrin migrain in my house like breath mints. Great for shadows. I thought I had a tumor too when I first started getting hit.

Title: Re: I'm Scared!
Post by rachkim on May 4^th, 2006, 3:41pm

Thomas,
Thanks for answering so quickly. I feel better about the meds. Do you get rebound headaches? I guess they can't be any worse then these.

Rach

Title: Re: I'm Scared!
Post by Guiseppi on May 4^th, 2006, 4:21pm

Hi and welcome! To say the least you have a lot of reading to do here. You need to find a preventative for when you're in cycle, I use lithium, others use verapamil and topomax. Then you need to find an abortive for when they hit. Get your doc to prescribe oxygen!!!!

Read the link on the left, it aborts most headaches and has very few side affects, but must be used correctly or it can be worthless. From the way you described the imitrex it sounds like you used the nasal spray. It made me barf when I used it and didn't help at all. The injectable imitrex stops the headaches for me but I hate how it makes me feel so I only use when oxygen isn't available.

Again you have a lot of reading to do. Welcome to our house they're are a million people here....okay over 10,000, dying to help you. Much peace and a pain free day atcha.

Guiseppi

Title: Re: I'm Scared!
Post by thomas on May 4^th, 2006, 4:51pm

on 05/04/06 at 15:41:28, rachkim wrote:

Thomas,
Thanks for answering so quickly. I feel better about the meds. Do you get rebound headaches? I guess they can't be any worse then these.

Rach

Only from imitrex.

Title: Re: I'm Scared!
Post by BarbaraD on May 4^th, 2006, 5:38pm

Rach,

Welcome to Clusterville. And we've ALL thought we had brain tumors (couldn't find a brain in most of us ::)) .

Excedrin and black coffee is great for aborting CH in the early stages (under a Kip-6) but Excedrin can cause rebounds so use it carefully.

Black coffee or Red Bull are loaded with caffeine -- great for constricting those old vasos... I usually wake up with a shadow boarding on about a 4-5 and hit the coffee pot running. If it's over a 5 I take 3 Excedrin with the coffee and hit the O2.

Be sure you use the O2 correctly. Read on the left and get the right mask.

I always hate to see such a young person getting hit. But don't let the CH rule your life. Those twins (bless you my child) need you. This old broad has been chronic for so long that she just takes the hits as they come and deals with a four year old grandson on a daily basis. He's learned when Granny has a headache - get away from her - she's Grouchy.

Glad you found us, but sorry you had to. But now that you're family, pull up a chair and sit a spell. We're a nice bunch of folks - even some of the ones who try not to show it.

Hugs BD

Title: Re: I'm Scared!
Post by Jonny on May 4^th, 2006, 9:26pm

on 05/04/06 at 15:30:39, rachkim wrote:

I tried Imitrex nasal spray yesterday and it didn't help at all...besides it drained down and was disgusting.

Your not suppose to snort it like a line of coke, tilt your head back and breath in slowly as you press it. its suppose to be absorbed in your sinuses, not your throat. if it hits your throat its all but wasted.

Good luck.

Title: Re: I'm Scared!
Post by Drew_Va on May 4^th, 2006, 9:35pm

Good info Jonny. I just hit the inhaler for the first time when the beast tried to creep up on me a little while ago. I got some aftertaste as well so I must have breathed in too deeply. It worked though. 20 minutes and its fading. I did step outside for a few minutes and it is a beatiful cool night here so that may have helped.

PFD

Drew

Title: Re: I'm Scared!
Post by RichardN on May 4^th, 2006, 10:48pm

Hi and Welcome

MAKE SURE you copy the 02 information and take it with you to your Neurologist. 02 works for 60-70% of us to abort . . . inexpensive and no side effects. I can kill the beast in minutes if used early-on in the attack.

You absolutely need to get the proper regulator (15 lpm) and mask (non-rebreather . . . the one with the bag) to be effective. I can't use Imitrex (arterie blockage and high cholesterol), so 02 is my only abortive . . . a real miracle for me and many others.

One of the biggest problems with CH is getting the correct diagnosis. Not that we all haven't seen doctors searching for relief . . . . the kind of pain we endure necessarily indicates a MAJOR problem (tumor?, impending stroke?, WTF IS IT?). The "not knowing" is definitely a bummer.

If indeed your CH diagnosis is correct, you're in the best place in the world to find the tools to battle our common beast.

Be Safe, PFDANs

Richard

Title: Re: I'm Scared!
Post by kcopelin on May 5^th, 2006, 8:30am

Hey and welcome home!
Now you already know more about pain than the vast majority of the population-it changes your perspective on little stuff, like labor pains and paper cuts and slamming your finger in the car door ::)
Guaranteed if you read all the info on this sight, you'll know more that most medical professionals, including neuros, about cluster headaches.
O2 really does help alot of people. I used the Imitrx nasal spray also-cause I really can't do needles, and guess I did it wrong. I really don't like the way it makes me feel-my neuro changed me to zomig and cut the dose.
You also need a preventaive. I recommend you print the list of CH meds and take it along to your neurologist.
Sometimes it helps to do a predinose taper while the preventatives are kicking in. Verapamil is one of the best.
If you're getting hit at night-you might want to try melatonin. Its over the counter and at doses of 9 mg or so it helps some of us get sleep.
Glad you found us,
PFDAN to y'all,
kathy

Title: Re: I'm Scared!
Post by rachkim on May 5^th, 2006, 8:48am

Thanks all of you for being so kind. I know that I probably didn't do the best job with the Imatrex inhalent. I am still trying to figure out how to be in excrutiating pain and administer my drugs right. I think that I wanted relief so bad that I didn't take my time. I have decided that I do not like spraying things up my nose -- not pleasant. I guess I would rather have the shots. Does everyone in here have medical insurance? I don't so I guess that is part of my stress. I have a really good job but the benefits are too expensive for us to afford. I know that after the neuros diagnosis I probably will have a hard time getting insurance in the future.

Barbara, Thank you so much for personal comforting. It gives me hope that I can manage this and still be a great mother to my children.

You all are too kind.

Title: Re: I'm Scared!
Post by karma on May 5^th, 2006, 10:28am

Quote:

I am still trying to figure out how to be in excrutiating pain and administer my drugs right.

One of the tricks to getting the fastest relief is to go for the abortive, weather 02, trex, zomig whatever works best, BEFORE the pain gets excruciating. Once the pian is at its peak relief is much harder to achieve.
Strong coffee, A redbull drunk very fast, help many.

Title: Re: I'm Scared!
Post by wip5150 on May 6^th, 2006, 8:42pm

Welcome (unfortunately)

As has been said before we've all been where you're at regarding the tumor fear. this is a great community and there's lots of fabulous information so dig in. Everyone is a little different so you'll most likely have to do a little trial and error but you have far too much to live for (I have twins too - boys that are 3 1/2. Trust me, that DOES get easier :)) so hang in there.

Bill

Title: Re: I'm Scared!
Post by sandie99 on May 7^th, 2006, 3:15am

Welcome Rachkim ! :)

I'm so sorry that you're hurting... [smiley=hug.gif]

You know, when I first begun to get ch, I thought that U had a tumor, too... My dad and uncle had both had tumors, so naturally that came into my mind.

I do recall very well what it was like to deal with ch in the very beginning... it was horrible. But remember, every time you feel even slightly scared, come here and let us know! Your ch family is here, always. :)

I'm 26 and I've lived with ch since 2001, on and off. So I can tell you that even though ch has been part of my everyday life, every single day, it also goes into remission and lets one live a normal life without pain. :)

Now, before you go to see that doctor, read as much about ch and medications as you can. I have met six docs during my ch time and I can say that half of them had no idea how to really treat it. I don't say this to scare you - but to prepare you. I wish that my first neuro would have told me that it might take some time before I'll find the med which takes my ch into remission... it would have helped me emotionally. And you WILL find the treatment which will help you. :)

I know from my experiences that different kind of meds can work: in spring 2004 my chronic ch went into remission thanks to verpamil (600mg) treatment. And now, when it returned this spring, I've been PF for 12 days - my "med" was drinking a can of ice cold Red Bull with ice. I don't knwo what will work with your ch, though. Lots of different kind of treatments have helped folkes at here. It's important that you know a lot about treatments when you go to see your neurologist, then you can tell if he/she is suggesting a treatment you don't want to try/it has not worked in the past for others.

I wish you lots of PF days as soon as possible.

Best wishes,
Sanna

Title: Re: I'm Scared!
Post by danm on May 9^th, 2006, 8:28pm

Welcome and believe me.....you will be glad you found this place in no time. I would recommend getting on your company's insurance plan ASAP. Chances are you will be trying lots of medications trying to figure out what works for you. Imitrex injections are probably the most popular abortive....and they are not cheap. I would bet that the insurance cost will end being less than you will spend on meds without insurance.

Just my .02. Best wishes to you.

Dan

Title: Re: I'm Scared!
Post by kcopelin on May 9^th, 2006, 11:01pm

I agree, insure yourself at least. In the meantime, maybe you can talk your doc out of some samples-enough to see if it works. Most have a veritable pharmacy-the reps really lay on the expensive stuff. I got three months worth of maxalt samples from my neuro a couple of years ago.
Also, the O2 is way more affordable than the triptans, and doesn't have as many funky side-effects.
I've got three children myself-it's hard on them but they adapt. I have assured all of them that so far it looks like these monsters are not hereditary.
Blessings and prayers for PFDAN!
kathy

Title: Re: I'm Scared!
Post by cekelle on May 10^th, 2006, 1:27am

Hello and welcome! FYI - I'm still in denial...I was diagnosed 4 months ago. I think I've had them for years, but always misdiagnosed. My wife gets them too. She was diagnosed last year and has had them for about 8 years or so. She knows and sees what I have so why am I in denial? Even my doctor told me what was wrong. I am just a stubborn man I guess. ::) Well, if you need any help with insurance my wife works for Blue Cross/Blue Shield and she may be able to provide you with some inside info. She goes by blossom on here. Hope you able to find what will help you. Everyone is different as far as what helps. Just be open to try anything once and keep asking everyone here for advise. This site is a wealth of info. Sometimes more so than the doctors can provide, but don't use this as a substitute for your Dr. either. Wishing you many pain free days! ;)