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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi, new here
        
(Message started by: need_a_break on Jul 6^th, 2005, 10:49am)

Title: Hi, new here
Post by need_a_break on Jul 6^th, 2005, 10:49am

Hi, my name is Val and I've never actually been diagnosed with cluster headaches. They started when I was about 11 and at the time I had MRI's done and was shuffled back and forth between Dr's, dentists, opthamologists, etc. The eye Dr was last and he called it eye strain as a last resort.
My heahaches will come out of nowhere usually 4 times a day, every day, for anywhere from a week to many many months. I have not found a clear pattern as to when they will start, but I have stopped eating aspatame which has seemed to help. I know exactly what it would feel like if I ever were to get stabbed in the eye.
Since I've never been diagnosed, so I'm not on any treatment. I usually wait untill I honestly cannot take it anymore and take a large amount of caffine with more than the recommended does of Advil, alleve, whatever I can manage to find the quickest. This doesn't make them go away but will take a little of the edge off. I've been trying to avoid this currently (personal reasons) and as a result I considered pulling my own eye out a little too seriously last time, so I thought I would look for some answers.

Title: Re: Hi, new here
Post by nani on Jul 6^th, 2005, 11:02am

Hi Val, welcome and sorry you had to find us.
Find a neurologist that knows about CH. While you're waiting for the appointment, keep a headache diary. Record times of day, intensity, duration, possible triggers, etc. Anything you think may be helpful. Read everything that you can here. Most of us know more about CH than most drs because of this wonderful place. Look at the oxygen info link on the left, it's been a lifesaver for many of us. Look here for medications info. Print both and take them with you to the dr.
http://www.brightok.net/~mnjday/chtherapy.pdf

Ice helps me during a hit. Heat helps others. Try to avoid the OTC meds, they can actually make things worse. They really don't help anyway. Keep us posted, OK? Good luck and pain free wishes, nani

Title: Re: Hi, new here
Post by marlinsfan on Jul 6^th, 2005, 11:09am

Hi Val, welcome. Heed nani's excellent advice. Also go on the left and take the cluster quiz. It's not 100% accurate, but will give you a good idea if you indeed have CH. Only your neuro can give you a proper diagnose.

Also check out the kip scale.

Most of us abort with Oxigen, so that link that nani mentioned is key.

Good luck and keep us posted.
jose

Title: Re: Hi, new here
Post by E-Double on Jul 6^th, 2005, 12:53pm

There are different HA that present similar to CH yet differ in duration, location, intensity and that are responsive to different medications.......

If you want to learn about any and all identified HA read through this......the International Headache Societies Frameset:

http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pdf

We are definitely a rare breed and I sure as hell hope it is not what you have.
Pain sucks regardless!!

Though there may be doctor sufferers here I am not one of them.....

I can offer ya some non-medicinal advice that might help alleviate some of your pain.....

Some tricks that I used to use and sometimes still do are:
*Wrapping a bandana tightly around my skull (be careful)
*neck rub
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.

I wish I had more to help ya but not too comfortable talking about meds if someone says they do not know what they have.......I was there not too long ago and though I certainly wanted info..I appreciated most people giving me household remedies per se' until I got diagnosed. We take dreadful meds.

Hugs to you and do read that link I sent you earlier for there may be a match but YOU STILL DO NEED TO GET TO A DOCTOR JUST IN CASE IT IS SOMETHING MUCH MORE SERIOUS!!!

I hope not and do wish you well!

Eric

Title: Re: Hi, new here
Post by Topical on Jul 7^th, 2005, 4:33am

Welcome to the board. Most of us know that feeling with the eye. It sounds like you made a good self-diagnosis. Confirm it with a professional and then please educate your past doctors. It may help others down the road.

I did the same thing for many years and was undiagnosed. I could hit myself for not seeing the right doc. (Come to think of it I did, :-/)

Take care, I hope you get a good treatment plan going soon. O2 is an angel that can kick the devil where it hurts.

Title: Re: Hi, new here
Post by burnt-toast on Jul 7^th, 2005, 8:14am

Consult with a neurologist to get working on formal diagnosis and some treatment options to reduce/relieve you pain.

Welcome, and take as much information from the site as possible when you see a Doc. and have your symptoms fully documented when you get there. This will help significantly.

Nothing personal but hopefully you won't need us long-term good luck with your diagnosis and relief.

Tom

Title: Re: Hi, new here
Post by paul_pero on Jul 7^th, 2005, 8:53am

Hi,

Sorry you had to find us.

I only found this site recently and the info here has been a Godsend. Look around and ask questions. Everyone here will help. They helped me get oxygen and that has been the first pain relief I have ever got.

So if your visits to this site help you get some relief like me it will be well worth it.

PAul.