My name is Jesi and I'm 19 years old. My dad is a sufferer of the ch monster....and I am too. He was diagnosed with them at 16. I was diagnosed at 17. Before my headaches started about two years ago I would watch my dad suffer from them without being able to do anything except take my younger sister into the next room. Now, my mother has to be the one who take my sister into the next room because my father and I both suffer from the headaches. I remember when I was little, I would hide on the stairs and watch my dad pace back and forh waiting for the ambulance to show up at our house. I was extremely confused, and thought he was acting crazy. Now I know he wasn't.

I suffered from one of the headaches at work the other night, and scared my superviosr as well as my boss. I guess when I sad my head hurt they thought two advil would take care of it, I guess they didn't expect to see me on the floor screaming. My headaches are so severe, they have caused me to have mild seziures.

Because I'm female, my parents thought that I had little chance inheriting my fathers headaches. Now we just pray everyday that my younger sister doesn't develop them.

It's really hard living with this and being only 19. It's taken alot away from me, including my dignity. (having your boss dump you into a wheelchair is not the best feeling in the world) People who don't suffer from ch, or don't live and care for someone who does, they don't understand anything about them...and it's difficult trying to explain it.

I've been looking around online for some type of support for ch, and I'm really glad I found this site. I have a very hard time dealing with these headaches, and to find something to help me cope with them is a really good feeling.  I try to stay positive, but it feels like there is this thing lurking on my shoulder waiting to eat me.

Hi Jesi, just as your dad understands exactly what you're going through, we too know just what it's like.

You've not mentioned anything about medication. Hopefully you've got a good preventive, like verapamil, lithium or topomax which will cut back on how many CHs you get.

Then you need something to abort a CH when you get them. Have you tried oxygen? Many of us can abort a CH in under 10 minutes using high flow rates via a non-rebreather mask. There is a load of info on the left with the oxygen link.

Imitrex injections are also good for aborting CHs. Again there is a tip on the left to make them last longer.

Have you tried energy drinks, like Red Bull, which contain both caffeine and taurine. Drinking one of these at the start of a CH can reduce the intensity and / or duration of an attack.

With a good preventive plus options to abort a CH you can really get back in control of your life and not have CHs appear to be controling things.

And send your dad here too. Both of you can read here, find out more about CHs and what to do about them. Ask away with any questions too.

Everything our friend Mike said, and another G'day for good measure.

Welcome home.

Hi Jessi,
glad you found us but sorry you had to.
Its hard trying to explain yourself to others, people in work, familly and friends and you will hear comments from others that will make you scream either with laughter or frustration. you couldnt be in a better place as here as we understand what your dealing with and the people here have years of experience and are more than willing to help.
be carefull here theres a few looney tunes who are not right in the head, actually i think im the only sane one  [smiley=gocrazy.gif]
Please read the Oxygen link on the left it sorted me out and wouldnt be without it. works in 5 minutes for me and really is a wonder (when used correctly)

Mark (not crazy yet but working on it)

Welcome to the board, and drag your dad onto this board too. You will learn everything you need to know to manage your CH's here. You've been given some great starting advice...to continue....

You need to try and get into a headache specialist neurologist. Your general practitioner won't know a damned thing about them and even most neuro's are 20 years behind the times in treatment options.

OXYGEN OXYGEN OXYGEN. I've been rolling with the beast for 32 years, nothing holds a candle to the speed of abort, the convenience, and the cost of oxygen. My attacks used to run 90-120 minutes untreated. Now I feel that pressure in the ear and the tension in my neck starting up, I fire off the 02, 6-8 minutes later I am completely pain free. It's almost scary it works so well.

Like I said, get dad on this board too. An educated CH'er hurts a lot less.

Joe

I'm looking for a nerologist at the moment. For the past two years my headaches were not as frequent as they are now, so my dad is helping me find one so I can get preventative medicaton. My insurance doesn't cover imitrex, so I have sumatriptin which doesn't always work. I've learned a cup of black coffee and goodies powder works when I don't have my medication with me. (athough people in the emergency room look at you funny when you ask for coffee)

Oxygen never worked for my dad, but I think I may try it because I'll do anything to make them even a little bit better.

Thank you all so much

Quote:

Oxygen never worked for my dad,

Jesi, since your Dad has had them for such a long time, I am inclined to think that 02 didn't work for him because he wasn't using it correctly.  Back then Dr.s knew less than they do now and that isn't very much.   To the left, there is a yellow button to click on the proper usage of 02.  Read it and have him read it also.   02 must be used with a non-rebreather mask.  The regulator must be at least 15 lpm.  25-to 45 lpm is even better.   


Quote:

My headaches are so severe, they have caused me to have mild seziures.

CH doesn't cause seizures.  Have you had a thorough exam to msake sure there isn't something else going on?   


Quote:

My insurance doesn't cover imitrex, so I have sumatriptin which doesn't always work.

Imitrex IS Sumatriptan.

In the meantime, please DO try the energy drinks.   I personally like Rock Star, but make sure the drinks have 1000mg. of Taurine in them.  For some reason the Taurine along with the caffeine does the trick.

 
Quote:

I've been looking around online for some type of support for ch

 

    You couldn't have found a better place than right here for that  Jesi.

  Linda

Your probably right about him not using oxygen properly...which I blame on the ems people because they used to think he was absolutley crazy, and faking the pain.

On a different note, ch does cause me to have mild seziures depending on how bad they are due to previous nerve damage.

My doctors gave me sumatriptin tablets and told me it was diffferent from imitrex. Learning its not, makes me wonder if its the wrong medication. Which might explain why it doesn't always work.

Hey Jesi,

Just wanted to jump in and say Hi and Welcome.  So glad that you found us.  Sounds like oxygen could really help - changed my life!! and I'm not exaggerating!  Honestly, as soon as you get a good neuro demand 02!!

Wishin you all the best,

Kate


agh gotta go!  Just turned around and found 3 chickens inside the house  :o

---

Hi Jesi & welcome
As you can see sanity is not essential here.

Kate in Oz wrote on Dec 2^nd, 2010 at 6:05pm:

agh gotta go!  Just turned around and found 3 chickens inside the house  :o

Er Kate i can only see two chook's, who's the other chook ;)

Cheers
Barry

Barry_T_Coles wrote on Dec 3^rd, 2010 at 4:28am:

Hi Jesi & welcome As you can see sanity is not essential here. Kate in Oz wrote on Dec 2nd, 2010 at 6:05pm: agh gotta go!  Just turned around and found 3 chickens inside the house  :o Er Kate i can only see two chook's, who's the other chook ;)

In the oven for dinner?

We've never had any chooks walk into the house, but we did once have a pukeko wander in. Our 16 year old cat thought that all his dreams had been answered and was most disappointed when we let the pukeko walk back out of the house.

I apologize to all......but yeah....I have to ask......
What's a pukeko??? ::)

Joe

I binged....a pukeko is a new zealand swamp hen.....and it's purple/blue with a red head!
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Hello and Welcome Jesi.

Just had to say ... That is one Strange lookin bird.  :-?

Guiseppi wrote on Dec 3^rd, 2010 at 3:01pm:

I apologize to all......but yeah....I have to ask...... What's a pukeko???

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They are really funny when you throw them a bit of bread as they'll grab it and just run in a random direction for about 50m before they stop to eat it.

They are found in Oz and NZ.

We have purple swamp hens here on Phillip Island, too.The chicks are covered with downy purplish black fluff and look like they have afros.
The local winery, just down the road from us, is called Purple Hen and has a drawing of the bird on the label.
Hi Jesi,
I've only been here about 6 weeks but these folks are the best supporters you could ever hope to find, and they know what they are talking about!! Do read the info about oxygen and give it a try, it's been a life saver for me.

Quote:

Because I'm female, my parents thought that I had little chance inheriting my fathers headaches.

I assure you.  Even though it nis more prevalent in males by a ratio of about 4 to 1...women do INDEED get CH.   

[quoteYour probably right about him not using oxygen properly][/quote]    don't blame it on them.  Blame it on the absolute ignorance of everyone so  many years ago.   We know better now so there is NO reason anyone today has to suffer like they did in the past.  Unless they choose to, that is. 

Linda

Purple swamphen/pukeko is best boiled in a five gallon drum along with two axe-heads.  When soft, dispose of bird and eat axe-heads.