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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New, not Diognosed but Sure!
        
(Message started by: Punkstump on Dec 12^th, 2005, 1:05pm)

Title: New, not Diognosed but Sure!
Post by Punkstump on Dec 12^th, 2005, 1:05pm

Hello,
My name is Jeremy, Im 17, Im from Ohio and i believe im suffering from cluster headaches. (Not Medically Diognosed)
Last week, actually just 4 days ago i went to a nerologist who mentioned cluster headaches. He couldnt tell me for sure so he wanted to perscribe Neurontin. By the way i did my homework and this med. has known to make people moody and possible suicides.
I have taken the quiz and went over the traits on this site and im convinced without a doubt that i suffer from cluster headaches.
It all started about 3 years back. Sitting in class i would get these headaches on the left side of my head. Everyday(well not everyday i would get them off and on through the week and somtimes on the weekends), same class, same time, it was 10:30am. Sitting there with all the people around me, i would put my head down. the teacher would yell because he thought i was tired. yes, at this point i cant take the pain. tears in my eyes id say "yes sir" sometimes even getting kicked out of class for "sleeping". Through all of this i could only think of what problems may have caused these. after an attack in the morning i would have, what i thought to be relapses of the same headaches, through out the day.
It was before lunch so maybe i was just hungery. I thought about my suger, caffine, sleep, body fat (im very small for my age"103 lb."). who knows. nothing i ever tried to regulate seemed to work. that following summer the headaches went away.
The new school year came. New school new room new everything. I thought this was going to be great. Two weeks into school and the headaches started in again same time in the morning 10:30am. i couldnt figure it out. This is when i first started asking a docter for advise. i was perscribed midrin. the med. helped but could only set the pain aside but never take it away. i figure this is what may be called the shadow. yes i know the shadow too well before and after the headaches i get them. eventually the dosage of midrin was up too 3 pills and my docter decided they werent cureing me and she took me off. since then i have had MRIs done and blood work. I went all that year with the headaches, through summer and now this year. the headaches have changed time since then. they seem to come and go as they please now. not showing any set pattern. some days i will have them and some days i wont. the scale that you use to regulate the headaches struck me a very interesting. most of my headaches range from 4-7 and have only had a few that are really high on that scale. the only thing that worries me is that these headaches are forever seeming to get worse.
On this friday i have a schedualed MRA to be done and will hopfully know for sure.
Currently i feel that my headaches are chronic im pretty confused on how all of this works. (i just heard of cluster headaches like 4 days ago and am interested in relief.)
please if anyone has any comments, questions, etc. i would greatly appriciate it.

Thanks
Jeremy

P.S. I am happy new member and from what i have heard this is the place to be!

Title: Re: New, not Diognosed but Sure!
Post by marlinsfan on Dec 12^th, 2005, 1:52pm

Welcome Jeremy, like you, mine started in High School some 23 years ago... Lucky for you, you know what you have, and you found out pretty quickly.

The MRI will rule out any tumors, or stuff like that. If it is clusters you have, get the right treatment. This doc has some very good info. Take it to your doc:

http://www.brightok.net/~mnjday/chtherapy.pdf

Also, see the link on the left on Oxygen. It won't help you during your daytime attacks in school, but maybe if your infirmary or nurse has oxygen, you can take a prescription from your neuro and have the nurse allow you breathe it in. It kills my headaches very quickly.

Keep reading, young friend. Lots of good info here.

PF wishes.

Title: Re: New, not Diognosed but Sure!
Post by burnt-toast on Dec 12^th, 2005, 9:32pm

Jeremy,

Continue the efforts to get a good diagnosis. The testing you mentioned should rule out physical causes of headaches simular to CH.

It's not unusual for a Neurologist to be unfamiliar with CH. Start keeping a headache journal and gather information that supports your belief that you have CH. Take this and your journal to review with your doctor(s). Don't be afraid or intimidated - work with your Doctor(s).

You've landed in a good place. This site is full of information, supporters and fellow sufferers. Do some Google searches for Cluster Headache information, there is a growing amount of information available on the condition. Others here will probably provide you with some really great links.

Please keep us up-to-date on your progress. Good luck on your journey and hang in there.

Modified to add - And don't be afraid to vent to the the good folks here if the headaches are getting to you. Most of us are not doctors but we know how frustrating and difficult what you are experiencing is - and we're open 24 X 7. Welcome abord Jeremy.

Tom

Title: Re: New, not Diognosed but Sure!
Post by E-Double on Dec 12^th, 2005, 9:44pm

Do as Tom suggests!
Well put.

If you do recieve a diagnosis utilize the information provided in the link by Jose.

Familiarize yourself with everything in it prior to just in case so that you know what you will be recieving or should be receiving in regards to proper treatment.

Best of luck Punkdude.

I am one @ heart too....check my avitar 8)

E

Title: Re: New, not Diognosed but Sure!
Post by Will_Williams on Dec 29^th, 2005, 1:07am

What's up Jeremy!? My name is Will and I know eeeeeexactly what you mean! Mines started in 11th grade. Everyday at 12:30. Sometimes it would last throughout the rest of the day. You should try and get some special kind of note from your doctor, seeing as to how teachers always think that students are tryna pull something to get out of class or go home. This way you'll have proof, and they have no choice but to put their own ignorance aside. I'm 20 now and I just found out yesterday that I have CH, if I would have known when I was still in school then you better know that I would've shot for the note! I just joined today. You should check out my post, it's alot like yours! By the way, what part of Ohio are you from. I'm from Cincinnati, but I've been living in Atlanta for a few years now. It sucks... If the doctor perscribes Imitrex, ask about Relpax... Imitrex is wack!

Title: Re: New, not Diognosed but Sure!
Post by Punkstump on Jan 4^th, 2006, 10:28am

OK... well nothing really new in the medical study of my headaches.MRA and MRI came back fine. i dont have another nerologist apt. for like 2 months.

Will! I'm from columbus area

Looking for any information i can find on the study of LSD and "Magic Mushrooms". Looks like they are using them to help! (somthing about interuption of cycles)

About a week ago i experimented myself and have been headache free for 6 days strait!
Struck me odd cuz, from what research i found, it only effects episodic... my headaches dont show any sign of pattern or wave-like form. (thought i had chronic)

of course maybe i dont have the cluster headaches like i thought! I cant tell yet.... not diognosed but the pain is like nothing i have ever felt before. very confused and frusterated! >:(

Signed,
Jeremy

Title: Re: New, not Diognosed but Sure!
Post by Ghost on Jan 4^th, 2006, 10:52am

Hoping you mean LSA not LSD. There is a few good treatments but make sure you can handle them. Hang in there and when you do find something that works stick with it. you may build up a tollerence to some treatments, but you may not. if you do you doc may increase it or change it, either way later on you may be able to use again and be effective again for a while. Remember dont give up and stay strong.

Title: Re: New, not Diognosed but Sure!
Post by Jasmyn on Jan 4^th, 2006, 12:51pm

Hi Jeremy.

Don't give up and stay strong like the Goast said but heed the advise Marlinsfan (Jose) and Burnt-Toast (Tom) gave.

This is a great place to be when you have CH, as we all understand what you are going through. We are here when you need help and support.

Title: Re: New, not Diognosed but Sure!
Post by Guiseppi on Jan 4^th, 2006, 1:09pm

Hey punk, sorry to say but welcome to the club. I'm gonna second or third, (I lost track), the suggestion about oxygen. I started on Midrin like you did and then went through the whole litany from fiorinal to the lidocaine squirts to the ergotamine under the tongue, the only constant in 25 years is that oxygen almost always helps. Even the ones it won't vanquish it takes the pearcing edge off and makes it manageable. Keeping you in our prayers guy, hang in there.

Guiseppi

Title: Re: New, not Diognosed but Sure!
Post by MJ on Jan 4^th, 2006, 1:50pm

on 01/04/06 at 10:52:55, Ghost wrote:

Hoping you mean LSA not LSD. There is a few good treatments but make sure you can handle them.

LSD is really improved LSA. Very similar, Much much much stronger but derived initially from LSA for headaches among other things.

LSA = Lysergic acid amide
LSD = Lysergic acid diethylamide.

http://www.clusterbusters.com/

Be carefull, Read and know what and why you might do this beforehand.
LSD puts you in jail as well, LSA containing seeds does not.

Title: Re: New, not Diognosed but Sure!
Post by stickboy on Jul 5^th, 2006, 9:04pm

hi jeremy, im new to this site today, i started having ch about two years ago shortly after a car accident, my physical therapist told me they were pain from my neck, up untill a few months ago i just figured he was right untill i read a column in a news paper on ch, i about shit my pants finding out what i really had, i researched the net and here i am, ive already learned alot and hope to figure out how to use this site completely, the only thing that had ever helped me thru a ch is a bag of ice on my head and neck, it doestn take all the pain away, but it helps, so give it a try