Hi All

hacker22 · Hi All

Just wanted to say hi to everyone.
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Annette

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

My vote is Hellz YEAH!!!!
lol. O2 is like God LOL And yes i am episodic

Annette

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 · 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

hacker22

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.

Sherri

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....

hacker22

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

Sherri

Anytime

Annette

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

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.

BigSi110

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.

Annette

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

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

phil h

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

hacker22

I have been diagnosed, but it was just a long time ago. Like I said in my previous post, my first hit was in high school. My parents took me to the hospital when the second one came around a couple of weeks later, and I got the MRI and some other tests and he told me that it was probably CH. He did give me some sort of Rx for awhile, but because I didn't know that I was only going to be getting them around 4-5 months during somewhere, I quit taking them. Ive just never gone back to get them I guess. I've always found that Oxygen works well, So I guess thats why I haven't tried any meds yet.
Also, I haven't been prescribed O2 either, I actually just go to the welder shop and swap out my K tank for about $40. It works just fine, same stuff.

phil h

Oxygen seems to be what works best for most . I'm
glad you're here . How do you manage your CH's now . Some of us have real trouble being able to work consistantly because of the CH's . Tell us about yourself . you know...... age/marital status / job / hobbies. that kind of stuff . The more we chat on here , the more we find we have many interests in common . We share how we deal with our hits , before , during and after . We all experience things a little differently . We are always looking to try something new to improve our CH condition........ We all seem to enjoy music from a wide variety artists ................ phil h

hacker22

Well like i said earlier I only get 2-3 a year, so It doesnt really interfere with work too much. My employer (Best Buy) is fairly flexible with hours and stuff as well. My job is selling computers, and I also build websites and repair computers outside of Best Buy. I'm attempting to get my own business going, but finding the time for it is kind of hard with fulltime school and almost full time work. I am married to the best woman in the world. She gets CH's a couple times a year too, as well as her dad. I am in school for computer science and software development. As for hobbies, I love going to dinner and a movie with my wife, and I like doing basically anything that has to do with computers :)

I dont really have a specific genre of music I like. Mostly I like rock (classic, alternative, metal, whatever) But as long as the song Im listening to sounds good, I like it lol. It just has to give you that feeling you know? Just that feeling like your "into" the music.

Annette

Hey Hacker

Please introduce your wife and get her onto the board too. She is both a CHer and a supporter so she is most welcome here.

Ike

I think i must come out and say what i feel a little here. I don't mean to be rude but i think you have migraines and not Ch. Please take the time to read both links im going to post. Some of the things you say just dont really fit Ch.
Have you seen the Ch video ? Please dont take this as me flaming you i just want you to be sure of what you have and as someone with Ch for 7 years id say you dont have Ch.

http://en.wikipedia.org/wiki/Cluster_headache

now this one on migraine

http://en.wikipedia.org/wiki/Migraine

Ike

Sherri

Yes Hacker...

Ike and I discussed this, and it seems as if you may have migraines. Some of the things you describe aren't of CH origin and not possible...

As Ike said, in no way do we want to be nasty...we want you, your wife, to get the right help so you are well.

You really don't want to have to take some of the meds we do...esp. if not necessary. Please take care of yourself, and hopefully find pain relief.

Have you ever heard of or tried Maxalt sub-lingual tabs? They are for migraine relief and work very well for migraines.

You put the tab under your tongue when you feel the headache coming on. The tablet is very "crumbly" so you have to be careful you don't drop any of it or break it...

I peel the wrapper off right over my mouth...I put my head back a little and open my mouth...just in case I may break it.

Please feel free to ask us any questions...we may be able to answer some stuff. And Ike is great at finding informative links.

I have to ask you this out of curiousity....is that a picture of some type of detonator? I cannot figure out what it is..really I am curious.

Sherri

Annette

Hi Hacker

Do come back and share some more. Ike and Sherri are not flaming you or trying to chase you off. They are genuinely concerned for you. Since they have both been chronic for years they really know CH inside out and they can help you so much.

hacker22

You guys may be right about me having migraines and not CH. Like i said earlier, it was several years ago when the doctor told me i might have CH. Do they do any tests or anything to diagnose CH? Cuz the doctor simply went off of my verbal account of the experience.
And no, its not some type of detonator, its actually the end of the neck of my guitar. Its a fender strat.
Lastly, I don't think anyone is trying to flame me, so no worries. And thanks for the advice guys. Cuz like Sherri said, I don't want to take drugs I don't need.

Annette

Well, the proper diagnosis should be given by a neurologist. Most GP dont have enough experience to diagnose CH I dont think. I hope you will be able to see a neurologist soon, who has experience in treating headaches so that you can get diagnosed properly. In the mean time if you only get 2 or 3 bad headaches per year and they seem to go quickly with oxygen I guess its not too bad. I have heard of some people using oxygen for migraine with some success too. In general you should be avoiding self diagnosis and self medicating though.

Unfortunately there isnt any definitite test like a blood test or scan that can confirm CH. It is a diagnosis based on the history and the clinical symptoms. It takes experience to diagnose properly though because the symptoms may overlap with other kinds of headaches.

I sincerely hope that you don have CH as it is a lifelong condition which can get really bad and it can turn your life upside down.

Why dont you describe your headaches in details and see of the experts here can have some suggestions for you ?

Hi All

WELCOME HACKER