chronicclusterheadaches.co.uk

hacker22 · Posted: Mon Feb 25, 2008 4:07 am Post subject: Hi All

Just wanted to say hi to everyone.
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Annette · Posted: Mon Feb 25, 2008 4:54 am Post subject:

Hi Hacker

I am a supporter, I dont have CH so I cant answer your pol, but I can say though that oxygen doesnt sux, its us who suck on it for relief

Do you have CH ? Do you use oxygen yourself ? What is your vote on it ?

Oh and welcome icon_jokercolor.gif

hacker22 · Posted: Mon Feb 25, 2008 5:15 am Post subject:

My vote is Hellz YEAH!!!!
lol. O2 is like God LOL And yes i am episodic
_________________
--The end is near. The end is coming.

Annette · Posted: Mon Feb 25, 2008 5:29 am Post subject:

Sorry to hear you have CH, but glad you found your way here.

Please share a bit about your CH history, when did it start, how long is your cycle, what meds have you tried ? Apart from oxygen do you use anything else as abortive ? Are you in cycle now ?

CH is a strange condition in the sense that it seems to affect different people differently, and one treatment can work wonder for some yet is completely useless for another. Therefore we are forever interested in learning about someone else's experience.

Thanks and painfree wishes to you.

BTW, I think most people on this board found oxygen to be a God sent too.

Sherri · Posted: Mon Feb 25, 2008 5:33 am Post subject: WELCOME HACKER

Tell me about yourself hacker22. How did it all start? What meds have you tried? What kind of O2 mask do you have...what liter flow works best for you? What do you do during a hit when you are losing your mind? What is your average kip scale?

Where were you the first time you got hit...every CH remembers their first hit...as if it was yesterday...a bad nightmare....that doesn't ever end.

Welcome to hell.

It's good to have you here.

Sherri
Moderator
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"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

hacker22 · Posted: Mon Feb 25, 2008 5:51 am Post subject:

My first attack was in my sophomore year of high school. I was in my history class, and school was almost out. It was about one month before summer break and it was really hot, inside and outside. I had been having bad migraines for several months, and I simply took aspirin for them (didn't work that well). At about 2:30, I started getting what I though was another migraine. My teacher let me out of class, and on the way out to the car, the pain just slowly kept increasing. As I was stepping into the car, I began to become extremely nauseous and hot. My nose starting running and my eyes were watering. I knew this wasnt an ordinary migraine. I had never heard of clusters before, so I had no clue what i was about to feel. Then it hit. The pain felt like a thousand ninjas tearing through my skull. I couldnt drive it was so bad. I had to call my parents to come pick me up. I was in so much pain. When I got home, all I knew to do was take aspirin and lay down in a cold, dark room. The aspirin didn't do anything whatsoever, and I guess the cold dark room didn't either. I just remember that when the pain was over about two hours later I felt like I had just won the lottery.

Usually I get them in the summer, a max of about 2-3 per year, and every summer I make 110% sure that I have a full K size tank of O2 in preparation. I use a non-rebreather mask, and 15 lpm seems to be the right flow for me. I have also found that gently tapping my temples repeatedly helps a tiny bit as well.
_________________
--The end is near. The end is coming.

Sherri · Posted: Mon Feb 25, 2008 6:00 am Post subject:

Well ok...

Im so sorry...I have been chronic for over a decade. I KNOW exactly what you're saying.

Sometimes...even before I feel pain...I get nauseous, and still don't put two and two together.

My stomach lurches while Im ramping...I vomit...which is atypical. I know it sucks...I know.

We're open 24 hours...only CH's know all of the nuances of a hit. It's a bond...a strong one. CH destroyed my life...I lost everything and everyone that meant anything to me...just in the past year Im climbing back up.

I'm really glad you found us....

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

hacker22 · Posted: Mon Feb 25, 2008 6:07 am Post subject:

I'm glad I found this too. Thanks for all the support

_________________
--The end is near. The end is coming.

Sherri · Posted: Mon Feb 25, 2008 6:10 am Post subject:

Anytime

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Annette · Posted: Mon Feb 25, 2008 7:00 am Post subject:

You should be on preventives too ? Have you tried any preventives ?

My husband is a leftie. Are you a leftie ? Some people have them switched side too which is really hard to cope with.

Which neuro do you see? If he/she is good please recommend. Some people in your area may benefit from seeing a neuro with good experience.

hacker22 · Posted: Mon Feb 25, 2008 8:18 am Post subject:

I'm a leftie. I haven't taken any meds for my CH, nor do I see a doctor. I'm in college and don't have health insurance so it's a little too expensive. Soon I'll be promoted to full time at my job, because one of the other full-time employees in my dept. got a second job and is moving down to part time sometime within the next few months, so at that point I can get insurance and may look into seeing a doctor. for now I just stick it out and suck my O2.
_________________
--The end is near. The end is coming.

BigSi110 · Posted: Mon Feb 25, 2008 8:30 am Post subject:

Hi Hacker!!

Sorry, I fluffed up the poll and put O2 Sux without thinking. I thought it meant something else.

I haven't discovered the wonder of O2 yet, but it's on the 'Must Do' list.

Glad you've found this place. I only found it last week, but the help, support and information here is a godsend!!

My clusters have always been over my right eye, but that last one was over the left and really threw me.

The euphoria as you emerge from an attack is something I feel too, although it's mixed with the anxiety of wondering when the next one will be.
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All in good time...

Annette · Posted: Mon Feb 25, 2008 10:38 am Post subject:

Hacker, if you havent seen a doctor and havent been on any meds for CH, does that mean you havent had it properly diagnosed by a neurologist yet ? Have you had an MRI to rule out other nasties ?

Its really important to get diagnosed properly as there are other headaches that mimic CH but they are different and they require different treatment too.

The doctor who prescribed the oxygen for you, is he/she knowledgable about CH? seems to be it he/she knows to prescribe the oxygen for you. I wonder why they didnt give you some preventive meds when they gave you that script for oxygen.

BTW, how long does your cycle go on for and do you get hit at night too ?

There are a lot of things you can do to make it better. I am a bit concerned as if you only have oxygen you havent got the optimal treatment plan yet.

Are you in cycle right now ? if you are I am sending you lots of vibes and painfree wishes

Sherri · Posted: Mon Feb 25, 2008 12:15 pm Post subject:

WELCOME BIG S

I'm very glad you are here, and find comfort...that's what we are here for...you will find much compassion, help, and understanding. That is why Ike and I started this site...for CH's to be treated with the respect they deserve.

Yes. Big...Oxygen is A MUST. I had to go without it for seven years when I lost my medical benefits. Without oxygen hits go on forever.

With oxygen, it helps you not to have to take the entire ride...it halts it at a certain point.

You still experience pain...but when you're using oxygen at least you know it's going to eventually stop it...instead of being at that level of complete insanity. Psychologically, its' calming to know you have it as well.

I panic alot less now that I have it again....I couldn';t bear the thought of hti after hit...lasting an hour or two...just to have another one in twently minutes.

PLEASE put it at the TOP of your to do list. Welcome. Sherri

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

phil h · Posted: Mon Feb 25, 2008 2:33 pm Post subject:

Welcome aboard . Sorry you needed to find us , but welcome aboard . Have you gotten a diagnosis from an MD for CH's ? A neurologist is kind of essential in our journeys' . 1. He can confirm correct diagnosis , then Rx. appropriate meds . 2. He'd get an MRI to r/o brain tumors and such . I was dx.'d by my internist , who referred me on to a neurologist for clarity of dx. and tx . My internist wrote the RX. for O2 after my 2nd visit . Normally the neurologist RX's does that . Anyway the tx. approach is a combination of preventative RX's , abortive RX.'s and transition RX.s . Read everything you can. One size does not fit all in RX.ing CH's...... I look forward to getting to know you better .......... peace phil h
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"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra