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        New Message Board Archives >> 2002 Posts >> is this for real?
        
(Message started by: laraleigh on Dec 17^th, 2002, 2:22pm)

Title: is this for real?
Post by laraleigh on Dec 17^th, 2002, 2:22pm

Thanksgiving was my first one...and I had no idea until I went to the Dr...and he told me I probably had CHs...

This is by far the worst thing I have ever felt in my life and literally can't make it through the day sometimes. I am so tired and am scared to go to sleep at night because I know what is in store for me. How long is this thing supposed to last...how do you all cope? I am a 25 yo female - a first year high school teacher - and I don't really know what to do...and no one really seems to understand how horrible this is.

The worst part is - I keep reading that nausea doesnt usually accompany the headaches - but I get very ill to my stomach which increases the pain each time I get ill. The duradrin I was prescribed doesnt really seem to help either.

Does anyone have any advice? :'(

Title: Re: is this for real?
Post by echo on Dec 17^th, 2002, 2:28pm

If you havn't already Laraleigh take some time to take the quiz and read the information on the buttons to the left.
What made your doctor suspect CH?
The members of this site really do understand and can relate to what you are dealing with. We are here to offer suggestions, support and the ocassional kick on the back side to help you deal with the beast. Many of us have suffered through CH for decades.
As far as the upset stomach - not in my case unless I've taken abortive drugs.
Welcome to the MB

Title: Re: is this for real?
Post by sailpappy on Dec 17^th, 2002, 2:34pm

Laraleigh,
So sorry you have to join the ranks here, did you eat Turkey on thanks giving? Turkey has Tritaphan in it and this is sometimes a trigger for some people with clusters, some people it makes sleepy.
I had nausea %90 of the time, if you let the attacks get full blown then you chould expect the nausea.
Since this is just started for you I am going to suggest what I use to do for mine, at the first feeling of onset, get to a shower, turn on the cold water and while standing on the outside place only the affected side under the running water until you just cant stand it, this will give you goose bumps when your body cools down enough and within a few moments the attack should end. Most importantly is to not allow your self to get tensed up, grasping and clinching your fist, standing stiff legged on your toes and biting down on your teeth will only prolong the attack, thr to think of the most pleasent or important event that has occured in your life to occupy your mind. This always worked for me, usually within 20-25 minutes if I got to the shower before the attack got too bad! Hope it ends as quickly as it started.
Pappy
http://www.gifs.net/animate/sungulls.gif
http://www.gifs.net/animate/sailboat.gif

Title: Re: is this for real? ECHO response
Post by laraleigh on Dec 17^th, 2002, 2:56pm

The reason they diagnosed me... attacks most everyday on one side of my head, usually between 11 pm and 2pm. They wake me up with excrutiating pain. My right eye starts watering profusely and swells almost shut. My right jaw and right side of my neck also starts hurting. I also get this hard knot at the base of my head on my neck. Its when the headache peaks that I get the nausea. It makes me cringe even to think about it.

I would love to get a good nights rest...

Title: Re: is this for real?
Post by echo on Dec 17^th, 2002, 3:14pm

Sorry to read that. Looks like you have found an MB to help you. Welcome to clusterville.

Title: Re: is this for real?
Post by ave on Dec 17^th, 2002, 3:52pm

Well Lara, it sounds for real all right - though I am not a doctor.
Read up on the most used meds for clusters. Best information you'll find anywhere is under the buttons on your left.

Want to know something special, try the search button top right. If that does not help you ask us. Most of us have been there or support somebody with clusters.

And sorry to welcome you here.

Title: Re: is this for real?
Post by Bob P on Dec 17^th, 2002, 3:57pm

Yep, it's for real.

Quite a show the bastard puts on, ain't it?

Normal running time is 4 to 16 weeks.

If the duradrin isn't working, you may want to try some of the other abortives, Imitrex injections, Oxygen.

Settle on in. We know!

Title: Re: is this for real?
Post by cathy on Dec 17^th, 2002, 4:00pm

:-[
Hi Lara, sorry to have to welcome you to clusterville....but you couldn't have found a better place for help and support....

Cathy :)

Title: Re: is this for real?
Post by Margi on Dec 17^th, 2002, 4:14pm

Hi Lara,
Glad you've found us, but sorry you have a reason to have to look for us.

Funny you should mention that lump at the base of your skull. It is what we call a 'cluster bump'. A high percentage of clusterheads have this same bump in exactly the same place. It's a ganglion lump that is always benign, but for my husband, it becomes inflamed during attack and the pain escalates for him if he touches it during an attack. Strange, huh? Maybe it's the tail of your hypothalmus sticking out...no one seems to be able to give anyone a real explanation for it.

BobP's right, look into some Oxygen as an abortive and get yourself some Dramamine to help you get some sleep. It will let you fall and stay asleep, hopefully, without getting any middle of the night hits. It's available generically and without a prescription.

Pull up a chair, girl - read everything you can and take comfort in that you are not alone with your pain.

Title: Re: is this for real?
Post by tanner on Dec 17^th, 2002, 4:59pm

laraleigh, i am real sorry to meet you here but happy that you managed to find this place that quick. being a new guy (to the site) myself i will leave the bulk of the advice to the oldtimers. you did'nt say whether or not you are married or have any kind of support system. if so i highly recommend that you aquaint them with both this and the O.U.C.H. website. that will help a lot and save you some frustration.

again sorry your here, hope ya won't be around here long but in the meantime i will be happy to help in any way i can.

tim

Title: Re: is this for real?
Post by SommelierCH on Dec 17^th, 2002, 5:00pm

Laraleigh,

As always a double edge welcome. Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in. Drk^Angel should be along anytime now, to give you his classic “Cluster Head Greeting”.

What works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks.Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.

If you keep a headache Diary, apparently it helps some Doctors and Neurologists to diagnose your condition. Here are links that give info and ready made forms for your journal. This should give you some much needed ammunition prior to your office visit and, it should help speed up the process.
Form for Headache Diary:
http://www.headaches.org/professional/educationresources/PDF/headache_diary.pdf
http://www.headaches.org/professional/educationresources/PDF/howto_diary.pdf
The cumulative amount of knowledge residing within these people on the board, is amazing. Give them as much info about your problem (see “Hints for your first post”) and they will be able to help that much more.

Print out some of the info from this site and take it with you, the next time you go to the Doctor. Not to tell him what to do, but show him what has worked for others.

PFDAN,

David J.

Title: Re: is this for real?
Post by OneEyeBlind on Dec 17^th, 2002, 5:23pm

Welcome to the board !!! There's lots of good info here and some really great people. Sorry the beast found you, but am happy that you found us.

Title: Re: is this for real?
Post by Mark C on Dec 17^th, 2002, 5:35pm

Welcome...

Title: Re: is this for real?
Post by cootie on Dec 17^th, 2002, 6:00pm

Welcome Lara.....sumbody while back posted some questions about havein the jaw pain......ps: there was also reference to links and/or pics of nerves that travel thru the areas of the head and jaw that were interesting......Pam

Title: Re: is this for real?
Post by dodger on Dec 17^th, 2002, 6:31pm

:'(Hi Lara: Sorry to hear what your going through. You seem to have some of the same signs that I have, except my nose on the rt.side starts running (I also get my pain on the rt.side) Don't have nausea or the pain in the neck. You don't mention what you do when you get the feeling of an attack ? I hope your doing something.!! For me, thats the time that all hands are on deck and at their battle stations. You have GOT to do something right away. Don't worry, you will develop your own routine. I really get wacked when the demon gets a running start on me while I'm sleeping (sneaky bastard) Good luck to you, you can live with this,,,,,well almost.

Title: Re: is this for real?
Post by jonny on Dec 17^th, 2002, 7:04pm

I feel ripped off, I dont get no jaw or neck pain......I dont even get that big ass bump on the back of my neck like Elvis's momma use to get.

Anyone want to take up a collection of bump for me?

I feel left out on this one. :(

..............................jonny :D

Title: Re: is this for real?
Post by SommelierCH on Dec 17^th, 2002, 7:10pm

Jonny,

Quote:

I dont even get that big ass bump

What are you bitching about? You've got the "big ass", why the hell does a bump matter? ;D

You're batting .500, any ballplayer would kill for that.

David J.

Title: Re: is this for real?
Post by jonny on Dec 17^th, 2002, 7:35pm

on 12/17/02 at 19:10:59, SommelierCH wrote:

You've got the "big ass", bump ;D
David J.

I do have the bigass bump and its in the front of my pants not the back of my neck!!!!!

.......................jonny:D

Title: Re: is this for real?
Post by laraleigh on Dec 17^th, 2002, 7:37pm

Thank you so much for your kind words...and honesty as well - the dr didnt tell me much. What I have started doing (besides holding back the feeling to jump off the balcony) is take my 2 duradrin (which I don't think helps too much) and the other night I took some vicodin...and it helped I think...

I havent seen a neurologist yet, only a GP, but I think I need new meds - duradrin is for migraines, and this is not like any migraine I have ever had...so I am trying to get this "settled" as quickly as possible.

I am not married but live with my boyfriend. He feels pretty helpless when I get the attacks - he wants to do SOMETHING to help - but all I want is someone to yell and scream at while the headache progresses.

In any case, its nice to know people out there care!

Title: Re: is this for real?
Post by domm on Dec 17^th, 2002, 7:40pm

lara - welcome to the board. My only advise is to read, read, and read some more. Here and on the OUCH wesite. You will soon know more about this than most doctors.
good luck and PFDANs to you
domm

Title: Re: is this for real?
Post by Silver_Dolphins on Dec 17^th, 2002, 7:46pm

Welcome Lara,

Sorry that you are going through this too. In my experience, viciden sucks. As does percocet, or any other narcotic. They did help me sleep, but the Beast waited silently in the shadows, then pounced at the first available opportunity.

You will find a ton of information here. Try to absorb as much as possible. There are so many folks here that have so much experience that even the medical field use this site as a reference for the study of CH.

PFDAN

Silver Dolphins

Title: Re: is this for real?
Post by Ann on Dec 17^th, 2002, 8:43pm

Hi Lara! Sorry you had to find us.
I'm a high school teacher as well, so I know what you're going through on both fronts! To explain this strange affliction to my principal, I send him to this sight. I think he only read the first page and it was enough for him! :D When I get hit during class he always replaces me until I can function again. He is very understanding.

As far as getting sleep is concerned, Margi gave you great advice. Myself, I take 1/2 an amerge before bedtime. At the peak of my cycle, I take a full one. It prevents the nightly visits, but I do end up getting hit during the day. I can deal better with the attacks if I've slept, so it's a trade off. I use to puke my guts out when I took zomig as an abortative. It didn't abort sweet F. all, it just make me run for the porcelain alter! Perhaps your meds are giving you the nausea?

Good luck
hugs
Ann

Title: Re: is this for real?
Post by Roxy on Dec 17^th, 2002, 9:56pm

Welcome...sorry you had to find the site. Hopefully you'll find some meds that work for you. I'm chronic, so this is year round for me. I've found that, sometimes to abort, if it isn't a real strong one, two or sometimes three BC powders work, they get into the system fast...they just taste like hell, but when I'm scarfing them down I don't care. They only work if I get to them in time...and sometimes they don't work. Then I reach for the imitrex.

Sounds like your boyfriend will make a good supporter...just feed him lots of info so he understands what's happening to you. You'll just have to learn to not punch the next SOB who tells you, "Oh, yeah, I get headaches too." It's amazing how such a small thing can really piss you off. I don't think anyone, except the people on this site, really get it. Hope you stay as PF as possible.

R

Title: Re: is this for real?
Post by jimbo on Dec 18^th, 2002, 8:42am

Jonny,

ROTFLMMFAO literally ;D

You da man!

HH Jimbo

Title: Re: is this for real?
Post by Drk^Angel on Dec 19^th, 2002, 12:22pm

Welcome to the board! Sorry that the beast is slashing away at your cranium with a rusty butter knife. Good luck!

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