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        New Message Board Archives >> 2003 Posts >> My first day in the CH club
        
(Message started by: Shadowfax on Apr 15^th, 2003, 1:50pm)

Title: My first day in the CH club
Post by Shadowfax on Apr 15^th, 2003, 1:50pm

Guess it really started 2 years ago at the driving range. My right eye just kept leaking. All my friends told me 'its a blocked tear gland'. I went one further and self diagnosed myself with Pinkeye. Went through some wicked pain but only for 2 days then Poof. gone. Thought the eye drops did the trick. Then 2 weeks ago, it came back, in the right eye again. Half head headache, teary eye, plugged sinus. I'm like 'how in bloody hell did i get pinkeye again.' took some drops and it dissapeared again in 2 days, not even any real pain. Then yesterday during the Leafs-Flyers game my LEFT eye starts to run.... im like ' STUPID PINKEYE GO AWAY', had a prescription for eyedrops, put em in, go to bed thinking it'll all be gone soon. WHAM. 2am, half my head is gonna pop, nose is plugged, eyes all crusty, neck hurts, think i got a fever, jaw hurts, even my teeth on the one half of my face. MY TEETH! i nearly blacked out freaking out over what the hell is wrong. Splash some very cold water all over me and go back to bed all wet and cool trying to go back to sleep. Took maybe 20 minutes of good concentration. Today the doc tells me about CH, i look it up on the web, yep. thats me all right. Now i got 2 am to look forward to tonight. Oh joy. The only thing i can say is im fortunate this does not really bug me during the day, its only the runny eye and sinus congestion that bug me. And ive only had 2 REAL pain attacks in my life, but back then i was assuming it was infection. This sucks. So this is my thread, this is my 'why me', ive had allergies, asthma, all sorts of ailments, now this. My life gets better and better. I want to say im glad im not the only one, but id rather say i wish none of you had what i went through because i wouldn't want that Pain on my worst enemy (ok almost). and i know i haven't even tasted the worst it can dish out and i hope i dont. Oh well. Life goes on. Ahh thats the end of my Rant.

I think it was Tom who suggested i start a new thread on this. (Hope i spelled it right) To continue where i left off... dont worry about me driving home... im pretty quick with the squint to get the water out of my eye. Ill be just fine driving home. Its the lack of sleep im gonna have to worry about if this carries on long. Will see what the doc says tomorow. Until then, good luck to you all and hope they find a silver bullet for this stupid syndrome soon.

ps-i like the term 'beast' for this thing, but whats 'shadow' relate to?

Mike

Title: Re: My first day in the CH club
Post by Roxy on Apr 15^th, 2003, 2:04pm

Welcome to the club Shadowfax, it's a shame you have to be here, but it can be a good place to be. Lots of information and people that will help you.

If you're worried about sleep (no sleep and ch's go hand in hand), try taking a dramamine every now and then to get some rest. It seems to help some people sleep through the night.

I took this definition off the first page of the site for you.

Quote:

Shadows are sort of "phantom" headaches we get, usually as a warning that an attack is on it's way.

Have you checked out 02 as an abortive? It works for most people, and there is tons of info about it on the site.

Good luck to you,
Tracey

Title: Re: My first day in the CH club
Post by cathy on Apr 15^th, 2003, 2:07pm

Hi Shadowfax

W E L C O M E

Cathy :)

Title: Re: My first day in the CH club
Post by echo on Apr 15^th, 2003, 2:20pm

Welcome to clusterworld. Sucks to be us, but I'm glad we're a family. Disfunctional at times, somewhat opinionated but always supportive.

Title: Re: My first day in the CH club
Post by Jill on Apr 15^th, 2003, 2:48pm

Hello Mike....

I was just curious as to whether you have taken the quiz on the left hand side?

I dont mean any disrespect or to disregard your pain at all but I would hate for you to recieve the wrong treatment or take any meds that could cause you any harm.

With that said, I do wonder - and I hope that you dont for your sake - if you do have CH. Let me tell you why...

You said that the first time that you had pain for two days, took some eye drops and then it was gone. With CH, it really has nothing to with the eye besides the fact that the pain is felt there so I am pretty sure that eye drops would not make it go away.

The other part that makes me wonder is that you said that you could fall back to sleep with lots of concentration after twenty minutes. I am not sure if you meant that the pain went away and then you could fall asleep or you could despite the pain. With CH, it is much too painful to fall asleep or to even lay still.

And the last part is that you have only had two pain attacks within two years - that just seems like it doesnt fit with CH. You see, CH comes in two forms - episodic and chronic. Episodic means that it comes around the same time each year in cycles lasting anywhere from two to four months and pain free until the next cycle. Chronic - which I am - lasts all year with few days pain free if you are lucky. With both, the hits come from one to eight times a day, sometimes more. And always come with sleep, causing you to wake up in extreme pain.

I did want to ask if both times that this happened, were they are the same time each year? Just throwing something out there.

Again, I dont mean any harm by this - it is just that I would hate for you to self-diagnose yourself and take meds that could cause more harm if it is something else. Do you know what I mean?

I am sure that others can help you out more but I am trying to help some.

I am sorry that you have to suffer and I do hope that it proves not to be CH.

Jill

Title: Re: My first day in the CH club
Post by jonny on Apr 15^th, 2003, 2:51pm

I think you put it just right, Jill.

I dont see where I could anything to your post.

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

Title: Re: My first day in the CH club
Post by Shadowfax on Apr 15^th, 2003, 3:40pm

Actually, i got a bad habit of self diagnosing. And the 2 year thing... i am now totally unsure of when it was the last time i had it. i do know it was summer, but 1 or 2 years i cant say. all i do remember is telling myslef ' never touch your eyes with your finger again' since the last time.

but i do know i am going through all the symptoms right now at work. and i know i felt some real pain last night in my head right where my eye and my nose meet, just behind there.

I severely hope your right that i diagnosed myself wrong and dont have another bout with it tonight... but im still taking the eye drops (just in case) and will see the doctor again tomorow to see if i gotta see a specialist. One way or the other im gonna find out. But lady luck has always screwed me over at the casino, at love, and in life, so i am expecting the worst because hey, if im right... i saw it coming. if im wrong... unexpected bonus!

Until tomorow ppl, i wish ya'll very good health and an end to this soon.

Mikey has just left the office 8)

Title: Re: My first day in the CH club
Post by TomM on Apr 16^th, 2003, 6:47am

Shadowfax Mikey--Do you have a PDA or Outlook or Lotus Organiser? If so, use that to track the time, duration, and intensity of your attacks this round and what you did to abort them. This will show you your pattern (this time) but remember, it will only give you an idea of what to expect. The history of how you feel and what you do to relieve the pain is not only usefull to you but very good info to give to your doc. Please make sure you are seeing a Nuero.
I've also found sharing this info with da spousal unit helpful since it gives her the power of knowing what to do to help me.
TomM 8)

Title: Re: My first day in the CH club
Post by Wendy1 on Apr 16^th, 2003, 7:07am

Mike,

I am so very sorry to hear that you have been diagnosed with CH. :( "Worst Pain Known to Man". We are very special ppl, as we endure not only the pain of the h/a, but all the a/holes (physicians, etc.) that come along with it.

However, this is your best resource. You will find sympathy, advice, and everything else in between.

I am episodic, every 1-1/2 to 2 yrs. However, when the cycle hits, my life is literally turned upsidedown.

CH.com is my best friend. Pls visit often and read e/thing you can. What works for one, may not work for you, and vice versa, just keep trying to find what works for you. You may also find that what worked for you one cycle won't the next. After 20+ yrs and several h/a clinics in Mich & IL, I have found that a large (I'm on 360mg twice daily) dose of Verapamil can reduce the # of attacks.

In any case, I am so glad you found us!!!!! Good Luck!
PFDAN
Wendy

Title: Re: My first day in the CH club
Post by ZAIRA on Apr 16^th, 2003, 7:29am

Hello Mike and Welcome home!
Try to be strong and don’t get descouraging otherwise CH will be stronger.
Remember that as long as we keep working through OUCH, we will win this fight.
Fortunately, you are not alone,

Good luck from Italy

Zaira :)

Title: Re: My first day in the CH club
Post by Mark C on Apr 16^th, 2003, 8:14am

Welcome,
Like Tom said keeping track of the beasts visits can be useful. A headache diary can be found here. (http://www.headaches.org/professional/educationresources/PDF/headache_diary.pdf) Get thee to a Neurologist. Good Luck.

PFDAN's
Mark

http://hjem.get2net.dk/petermad2/text/welcome7.gif

Title: Re: My first day in the CH club
Post by Shadowfax on Apr 16^th, 2003, 8:25am

Hey guys, gals.

It just gets weirder. Last night, after work, got home, used my eyedrops (garamycin), prayed and went to bed. Slept like a baby, am at work, sypmtom free.

Whats going on?

Now ive read all the resources i could find on CH (here) and abroad on the net, and Pinkeye (net+doctor). I dont know whats up anymore. For one night in hell i had every symptom of CH. but it lasted less then 24 hours. Now unless i get hit with one tonight or tomorow i think i can rule CH out, or can i? i dont seem to fit in any one mold.

Are there any other maladies out there that mimick CH or pinkeye?

PS- i took the quiz and it said probable CH. its just the timing issue.

Title: Re: My first day in the CH club
Post by cootie on Apr 16^th, 2003, 8:47am

Hi Shadowfax......keep us posted on how things are goin and what your doc says......ya know.....strangely I have heard soooo many people gettin that pink eye crap here lately...kids and adults and I thnk I had it too few weeks ago. My one eye swelled shut and had a headache off and on fer while.....it came and went......really freaky .....lotta strange symtoms went with it.....so not sure if alota localized pain 'can' be associated with pink eye or not to be what you mite of had....I'm no expert on it by a long shot. Maybe it's a NEW mutated version of pink eye .....oh no optical biological warfare by terrorists....(ha-ha)......get it checked out....and let us know tay ? Pink eye should be only a livestock desease or called Sadam eye Pam

Title: Re: My first day in the CH club
Post by catlind on Apr 16^th, 2003, 8:57am

Shadowfax, if you find that the eyedrops are helping, and that you don't think you are a ch sufferer, I might suggest you get an appointment with an opthamologist. You could have something serious going on with pressure behind your eye.

Let us know how you make out!

Cat

Title: Re: My first day in the CH club
Post by TomM on Apr 16^th, 2003, 9:29am

on 04/16/03 at 08:57:30, catlind wrote:

You could have something serious going on with pressure behind your eye.

Allergies, perhaps? ??? I know there is no spring where Cat is but the pollen count in DC was over 1000 yesterday. What about where you are?

Me? I have no allergies except for A**holes. ;D
TomM

Title: Re: My first day in the CH club
Post by Shadowfax on Apr 16^th, 2003, 11:06am

Me... im allergic to all sorts of stuff, cat, dog, dust, smoke (half pack a day, i know i know) etc.. but i dont think thats the root. anyways, im gonna make an apptmt with my family doc... give him the low down and see if i need to see an opthomoligist, neurologist or any other specialist. take it one day at a time.

off topic slightly, i work for a company that hosts health career job fairs. we were supposed to have one in Toronto here this month but because of SARS, we dont want to chance getting 2500 nurses and other hospital workers getting infected. but when we do reschedule it, im gonna sit down and chat with some of the hospital exhibitors and nurses about CH, see if they know anything new (or even know about it) and bring this to the forefront. i think CH should have a stonger (whats the word) voice? presence? almost needs a national campaign like AIDS or Cancer.

i dont even know if i got CH, and even if i do, i didn't feel a KIP 10, maybe a 6 or 7, but i made it with some ice water and mentally telling myself itll be over soon. i feel for all of you who gotta go through so much more and if i can play even a small part in making the health care field understand 'passing a watermelon through your eye' is more than just unpleasant, then maybe they'll work just a touch harder on slaying that f'n beast once and for all.

I wish you all the best and will keep you posted should anything come to light (my own situation included)

Mike

Title: Re: My first day in the CH club
Post by catlind on Apr 16^th, 2003, 1:00pm

That's awesome Mike!!! Be sure to let them know about the convention in July as well. If you know of any groups or individuals that are interested in more info you can email me: catlind@twcny.rr.com

Cat

Title: Re: My first day in the CH club
Post by boos2 on Apr 16^th, 2003, 5:35pm

Hey Mike,

This site is a wealth of info. The people here are great. I would definately go see a neuro, maybe 2 or 3. Liek others here I miss-diagnosed with sinus problems for years before finally finding a doctor that knew what was up. So don't just take one doctors word.

Mike

Title: Re: My first day in the CH club
Post by Russ_T on Apr 16^th, 2003, 8:13pm

Welcome Shadowfax. I can fully relate to what your going thru. Check out all the info on this site that you can. I just joined 2 nights ago and can't pull myself away from the 'puter...so much info to read.

Russ