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(Message started by: courtneyglynne on Mar 24^th, 2007, 5:34pm)

Title: New.
Post by courtneyglynne on Mar 24^th, 2007, 5:34pm

I've been having these things everyday for the last two months. I wake up in the early morning and my head feels like it's on fire, i'm still halfway asleep and then it feels like someone kicks me in the head. My right eye starts tearing up. I start crying and screaming, pounding my head with my hands, and I arch my back and press my face against the wall as hard as I can to put as much pressure as possible on my eye. It feels like something is tearing my eyeball apart from the inside out. I can't make comprehendable sentences. I manage to roll out of bed and get on my feet, it hurts to walk or breathe. I'm whimpering and screaming and crying, then it acts like it's going to go away and it comes back. It stays and stays. The longest one was on and off for about 5 hours. I went to the hospital, they don't know what it is, they give me painkillers that doesn't make the pain go away, but it helps me cope slightly. I put my symptoms in and I found this...I don't know if I should tell the doctors what I think I have. Because maybe they know best.

I just need someone who knows what I'm going through. My family thinks I'm going crazy. I'm having a hard time coping with this. I'm 19 years old. I feel like this is a downward spiral.

Title: Re: New.
Post by BB on Mar 24^th, 2007, 5:57pm

Dear Courtneyglyne

My heart goes out to you to hear of your pain and feel your fear. You may or may not have cluster headaches. Only a doctor ( preferably a neurologist ) can make a proper diagnosis. Although some of what you described sounded like cluster, there are many similar types of headaches which have virtually the same symptoms with only some minor variations yet the prognosis and treatments can be quite different.

I understand that when you are in severe pain, all you care about is how to stop it now, no matter what. Unfortunately it doesnt work like that. Panicking and being in fear will only make things worse.

First let me give you a big hug and send you my best wishes, prayers and strong vibes. You are welcome here and people here understand pain more than anyone anywhere else. You are not alone in your pain nor the headaches, no matter what type.

Next, take a deep deep breathe once the attack has gone and get to work. You need to see your doctor and tell him/her all the symptoms you have, and yes do tell them that you think it maybe clusterheadaches. This is unfortunately a rare condition and many doctors are not familiar with it. The doctor may get you to do a few tests to check things out to make sure its not something dangerous or sinister. Then ask the doctor to refer you to a good neurologist, one who is experienced in treating different types of headaches. That way you will get an accurate diagnosis and will be on the right path to learn how to deal with/control this thing.

In the meantime, be prepared. There are a few things you can try safely while waiting for the proper diagnosis. Firstly make sure you eat and sleep well and at regular hours. Try to go to bed at the same time each night. Sleep hygiene can help ANY type of headaches. Secondly making sure that you drink enough fluid. Water is the best and aim for 2-3 litres per day. Thirdly you can try ice and cold face wash. Put them on your head, neck and eye at the time of the attack can help soothe the pain and the burning. If you can get to a surgery or hospital during an attack ask for oxygen, breathing pure oxygen through a non rebreather mask at 12-15L/min flow rate can stop the headaches if it is migraine or cluster, and it doesnt cause any harm.

Let us know how you go and if you are not sure of something, ask. You can also vent, discuss your pain, share your feelings ... anytime you wish to. There will always be someone here to listen.

Remember one thing, you are not alone and whatever it is, it can be controlled, you dont have to live in fear. Strength is here, draw on it.

Painfree wishes to you.

Annette

Title: Re: New.
Post by Rosybabe on Mar 25^th, 2007, 3:40pm

HI Courtney

I am so sorry you are going through such pain! Annette is right, you need to see a Dr. who can prescribe the right medication for you. In the mean time You can try ice packs and maybe a Red Bull or a double expresso coffee. Good luck to you!

Title: Re: New.
Post by TonyG1 on Mar 25^th, 2007, 8:43pm

Hi Courtney -- Very sound advise from Annette !!

Additionally the thing for those hits that wake you is timing is everything.... you sleep too long into it and the headaches will get away from you ... at the first sign --- caffeine, caffeine, caffeine... red bull works, Mt. Dew in a bind, coffee.... I've had these things for 20+ years and have almost always been woken by them or shortly after waking. Panic doesn't help :o, I know easier said than done....

As Annette said, you need to go to a doctor, preferably a Neurologist who specializes in Headaches... generally, you'll have to get a referral from your general practioner...

Good luck to you and wishing you pain free days / nights!

T.

Title: Re: New.
Post by courtneyglynne on Mar 26^th, 2007, 1:59am

Thank you guys so much for the advice. I wasn't sure how to deal with these. The doctors gave me all this medicine that isn't helping, period. But, the caffiene has been helping, although I've ran out. I'm not a caffiene person, so I had to go out and buy some. Wouldn't those energy shots also work?

-Courtney

Title: Re: New.
Post by ClusterChuck on Mar 26^th, 2007, 5:12am

Also, try to get your doctor to prescribe oxygen. It is amazing how well it aborts an attack for most of us.

BUT, it must be used properly, for it to work. Read the information, from the tab in the left margin, called oxygen information.

Good luck!

Chuck

Title: Re: New.
Post by chrisw on Mar 26^th, 2007, 9:02am

Courtney,

It does sound a lot like clusters, but like everyone said, you need to get it checked out. If your experience is anything like mine, and most everyone on this site, if you are indeed suffering from CH, you will need to do alot of research on your own, and try different remedies to see what works for you. As for painkillers, they dont work for CH, and they in fact cause a lot of people to have rebound HA, which make you feel worse.

Many docs dont know what the best treatment is, and they just keep prescribing meds that dont really work, so take an active role in your treatment, Take the advice on this site and go for the O2. It really does seem like a miracle, how well it aborts attacks.

Good Luck, and hopefully you can get some sound advice from your doc.

Hugs
Chrisw

Title: Re: New.
Post by Guiseppi on Mar 26^th, 2007, 9:58am

A lot of people use the energy drinks to abort. Monster is one but there are several. Look for the ones with caffeine and "taurine" in them, and slug them down at the first sign of one starting. Then get to a neuro and try to get oxygen prescribed. It's my first line in my arsenal against this damned thing and one of the most effective tools I have. Welcome and good luck!!!

Guiseppi

Title: Re: New.
Post by TonyG1 on Mar 29^th, 2007, 7:34pm

on 03/26/07 at 01:59:25, courtneyglynne wrote:

Thank you guys so much for the advice. I wasn't sure how to deal with these. The doctors gave me all this medicine that isn't helping, period. But, the caffiene has been helping,

Hey Courtney -- I noticed in your original post the hospital gave you pain killers... if you are having CH pain killers won't do a thing for the pain generally speaking... that is why it is important to get the right diagnosis so you can be on the right treatment for you. There are many abortive type medications that are effective (some not so much for some of our community); however, more importantly there are preventive medications that will help with the frequency and intensity of the attacks....