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        New Message Board Archives >> 2003 Posts >> hurts really bad. help
        
(Message started by: lirrgirl14 on Apr 18^th, 2003, 5:10pm)

Title: hurts really bad. help
Post by lirrgirl14 on Apr 18^th, 2003, 5:10pm

HELLO EVERYONE.
name is catherine/teddy. 27 female from long island. Ive been getting ch for about 7 yrs. Just last year was told what it was. Im on maxalt 10mg and prednisone. "Dont like the roids". for 15 days now. In the past i always got them in august. ALLWAYS. Then i started taking iron pills for being animic. And 3 days later my ch hit me in april . 4 months too early. coinsidence? Doctor says maybe iron pills messed with my cycle. I dont know. But every year is worse than the last. Im getting nervouse. How much more worse can it get. Actually i cant say worse. Its always a 10 but they are lasting longer and longer and i never seem to have a clear head during my 2 month cycle. they started out 1 a day for 20 min 7 yrs ago. now there 4-5 a day and last between 1-3 hours. One of them even last almost 6. Im scared. sorry if im boring you all . but i kinda feel good to get this all out. Iv read almost everything you all have said about meds 02 wich i just got delivered an hour ago.
Does anyone else out there get them in the middle of the day like me out of no where. I hate that. But i do find if i take a hour nap in the middle of the day. Of course i wake up with a ch but i can catch it with 3 advil 1 maxalt and a cup of coffee. And i think eating something is helping. And then when i go to sleep an night around 10pm i sleep throught the night that is untill 6am i wake up feeling fuzzy. Jump out of bed and do the same thing 1 maxalt 3 advil and coffee and eat. THis has been day 3 with no major attacks.
Well thanks for letting me bother you all with my boring life story. only question i have is what do you all do when you have an attack and you cant stay still . I walk back and forth back and forth on the front stoop. Sorry to say but if i had the guts to do it i would . Maybe i should be on antideppresent. Cause im not dealing with it well. IM starting to scare my self.

catherine/teddy

Title: Re: hurts really bad. help
Post by arby on Apr 18^th, 2003, 5:20pm

Catherine/Teddy

Your story will never be boring here - we're all the same only different. Just remember that every one of those things will end. Hope the O2 works for you - it does wonders for me and I owe it to this board.

Hang in there, you've got a lot of fellow clusterheads pulling for you.

Pain free days and nights to you,

Ross

Title: Re: hurts really bad. help
Post by jonny on Apr 18^th, 2003, 5:20pm

Your story is not boring, we have all been there done that.

Can it get worse?......you bet your ass it can, you could go through this everyday of every year.

getting them 24/7 is called chronic so day time hits are not rare.

pacing is a must for most of us.

Welcome aboard.

...................................jonny

Title: Re: hurts really bad. help
Post by cathy on Apr 18^th, 2003, 5:34pm

Hi Teddy it was nice chatting to you the other night, Im glad you posted here, look forward to getting to know you better......think I'll call you Teddy cos there are just so many of us Cathy's!!!

Im sorry your still having a rough ride...but we're all here for you. Wishing you pf times...

Cathy :)

Title: Re: hurts really bad. help
Post by Randn918 on Apr 18^th, 2003, 5:37pm

Lirrgirl...Thats so wierd! I have the EXACT same story. Same cluster cycle, same change, all of it. I'm convinced that there is something global that causes these things, or at least sets them off. Like solar flares, or radiation levels or day length or something. I'm also new here and can tell you, these are special people here. It's been a real motivation for me. I have been toughing it out with these things for 12 years but this year really got me down. Find myself on this board all the time looking for encouragment and support.

Title: Re: hurts really bad. help
Post by 9erfan on Apr 18^th, 2003, 5:38pm

Hi Teddy,

Welcome to the board. Sorry you have had to seek us out, but you'll be happy that you found this site because you'll get a lot more info here than you ever will at the DR's.

Trust me, we've ALL been through what you are going though. I cannot tell you how depressed I was the first year that I went chronic. I thought I was going to kill myself. But I didn't and I'm still here and I'm still chronic. Sometimes the only thing that keeps me going is reading everyone's posts on here...I know that I am not alone, I know that there are plenty of people who have suffered longer than I have, etc. But Jonny had the best advice of all, and I realized I've been doing it for years...Realize "IT WILL END".

I've been advising everyone lately to try the water therapy because it's really helped me A LOT....i haven't had a KIP 10 in a few months! I drink a gallon (at least) of water every day for the past few months and it's really helped lessen the severity of the h/a's.

Anyway, it doesn't work for everyone but it can't hurt.
Again, welcome and don't worry about venting...that's why we're here...

Virginia

Title: Re: hurts really bad. help
Post by jonny on Apr 18^th, 2003, 5:42pm

on 04/18/03 at 17:37:26, Randn918 wrote:

I'm convinced that there is something global that causes these things, or at least sets them off. Like solar flares, or radiation levels or day length or something.

You need to think again my friend.......that is so far fetched its stupid.

No disrespect meant, its just stupid to fill newbies heads with crap you know not.

.......................................jonny

Title: Re: hurts really bad. help
Post by Bonniegirl on Apr 18^th, 2003, 5:53pm

Hey Teddy, I'm really glad you found this board. I had to say hi and tell you that you are not the only one to feel so desperate. I'm finishing up (knock on wood) a cycle myself and before I got here, I was SO hanging on by a thread. :-[ Believe me, reading the posts, the info and tips can make all the difference in how you feel. People will reach out to you if you need it, hang around and see. If you wanna vent, :'( , or unload :-/, you can e-mail me. I'm pretty new also,but I can listen. You're not fighting this b*stard alone. ;)-Bonniegirl

Title: Re: hurts really bad. help
Post by Drk^Angel on Apr 18^th, 2003, 6:45pm

Welcome to the board! Sorry that the beast has thrown your cranium into his old, rusty, dull, acid lubed chipper/shredder from Hell. Welcome to the family! Good luck!

PFDAN............................. Drk^Angel

Title: Re: hurts really bad. help
Post by paul_b on Apr 18^th, 2003, 7:14pm

Very informative post. We are your support group. When the pain hits we do the CH dance. I would pace back and forth. My dog would join me in this crazy dance but I always wore him out. He would sit and watch and when it passed, hug time. If you don't have a pet to keep you company, grab or get a CH "Teddy". It is great psychological/physiological comfort. Welcome to the Family.

Title: Re: hurts really bad. help
Post by Callico_Kid on Apr 19^th, 2003, 1:10am

Welcome aboard. Sorry you're here, but so glad you found us. Your post was very informative, and not boring. that is why DJ started this board, (I bless him every day since I found this thing. It saved my sanity if not my life.) Please feel free to vent. When I dance I wear a path in the carpet around the DR table and into the living room and office. When my knees won't take any more walking I get on myknees in the corner ofthe couch andput my head between my knees, rock up on my feet and shoulders and try to turn myself inside out.

Then I come here and find out that I don't really have it that badly after all. "It will end!"

Title: Re: hurts really bad. help
Post by Charlie on Apr 19^th, 2003, 5:00am

Welcome aboard. You've found a place full of people who do understand. Your post was fine.

Global? No. It's faulty wiring by a careless designer.

Here's something that may give you some relief. It sure did for me:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: hurts really bad. help...nuff said
Post by rumplestiltskin on Apr 19^th, 2003, 6:08am

Show tune:Carousel"when you walk thru a storm hold yer head up high.....you never walk alone"

The "pacing" is one of the commonalities which seperates us Clusterfolk from the rest of the headache world. Since I strapped on the ole O2 mask, the length of the hose leashes me to a rather smaller path.....and actually I find vigorous exercise while sucking mass quantities helps a lot. The site of me naked ...or nearly so ...doing jumping jacks while hooked up to the tank, singing my mask muffled "fuck,fuck,fuck" song scares the pets and entertains my son. It lightens the burden when he sits laughing at me.

Cycle changing ?..... Show me a Clusterhead and I'll show you someone whose pattern's change.

Randn918....solar flares etc?...the cyclical and yet shared perversely changing nature of CH's connection to planetary movement and galactic occurences has been pondered by some pretty smart folks here over the years....check the "old board" archives...I'm thinking "Gary G"s geographical musings considered them relevant. (ignore Jonny's disapproval...he still thinks the Earth is flat and the sun "rises")

Quote:

like me out of no where. I hate that.

you done said a screenfull there girl.

Now....simply read all them left links....play in the archives....and know that somewhere on this site are the keys that fit yer particular CH lock....ways to lessen the frequency and/or the intensity of yer pain. Seek and ye shall find.

Walk in the sunshine
den

Title: Re: hurts really bad. help
Post by cheyenne on Apr 19^th, 2003, 6:53am

Hey there!

Obviously I know how you feel - all of us do. I'm new to this support group and I gotta tell ya - it has helped me more than the med's! Trying to explain the pain to someone who doesn't have ch is useless - they don't understand. I pace for hours - sometimes one hour - but the other night it was 6 hours. My eye and right sinus hurt like hell, my teeth ache but most of all - my ears hurt so incredibly bad that I can hardly take it. The back of my head feels like someone hit me w/ a baseball bat. I took the advice of drinking water - and it has seemed to help. I'm currently waiting for my daily ch - and I'm scared that it is going to be one of my "get me a gun and put me out of my misery" ch's. Hopefully, it will be one which makes me cry for only a half an hour. I've gotten a rotten sinus infection from crying so hard and so much. THIS HAS HELPED ME - The only time that I don't have pace - is when I sit in the shower and let hot water hit my head. I curl up in a ball and rock back and forth for about an hour and it seems to ease the pain. What's really cool is that my neurologist told me I can call him any time and he can be paged and I can run in and get a shot if it's one of my super bad ones. Hey - what's weird, is that I get hungry when I get a ch. So - there I am, crying, blowing my nose, and raiding the refridgerator. Does anyone else get hungry?

Title: Re: hurts really bad. help
Post by lirrgirl14 on Apr 19^th, 2003, 7:19am

YES i get hungry too!!!! I think it makes me feel better too. I also think its the prednisone. Crying is good too i think. Its a good antidepressent for me. When 3 days do ch. then 430 this morning back again.
catherine/teddy

Title: Re: hurts really bad. help
Post by Randn918 on Apr 19^th, 2003, 10:03am

Lilgirrl, How long you been on the prednisone? Throwing some prayers out your way!!!

Title: Re: hurts really bad. help
Post by ZAIRA on Apr 19^th, 2003, 2:54pm

Hello Catherine and WELCOME!!

Thank you for joinins us; unfortunately you are a CH sufferer, but fortunately you are in a big family and we help you!

Stay with us and good luck from Italy,

Zaira :-* :-* :-*

Title: Re: hurts really bad. help
Post by catlind on Apr 20^th, 2003, 9:28am

on 04/18/03 at 17:20:39, arby wrote:

Your story will never be boring here - we're all the same only different.

You're unique ... just like everyone else ;)

Quote:

YES i get hungry too!!!! I think it makes me feel better too.

Yup I get hungry too. Thought it was just me on that one, I think this is the first time I've seen this subject. I always thought it was my comfort technique. You know the routine the whole thing about eating for comfort. Interesting.

Pacing, dancing, screaming, crying, it all goes with the territory.

I have an extra long hose for my O2 tank, so I can still pace. Most times though I lose the long hose so I can get more O2 faster (probably a myth, but it makes me feel better :P )

Catherine is an awesome name, and the best spelling too ;) There's alot of us, glad I go by cat LOL

Welcome aboard, grab an oar and start rowing.

Cat