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        New Message Board Archives >> 2003 Posts >> question for any C.H. sufferer, PLEASE
        
(Message started by: ddbackcatch on Apr 22^nd, 2003, 12:49am)

Title: question for any C.H. sufferer, PLEASE
Post by ddbackcatch on Apr 22^nd, 2003, 12:49am

My name is michael and im 24 years old, i am very new to this, and had no idea that there was a world of people out there going thru this, for two years now i have been having severe headaches behind my left eye and only my left eye, never the right eye it is so severe and causes that eye to water profusely....they usually last for around an hour but sometimes up to 2and a half or so i have been eating tylenol like candy to no avail....it doesnt seem to help but like i said i know nothing about this, :( i thought i might have a brain tumor or something..... sometimes after several weeks they will stop for a while but them come back hard again
.... but my main question is and no one seems to talk about this is....Do these headaches progress and get worse over time ? i have only had them for maybe 2 years but now they seem to be way more frequent, and worse and i am living with it... i am on my own with no insuarnce and cannot afford a doctor and the thought that it could possibly gets worse scares me to death... i already want to poke my eye out! ... and if anyone has the time is there anything i can do that doesnt involve money and proffesional treatment. thankyou any body whos listening ....................Michael

Title: Re: question for any C.H. sufferer, PLEASE
Post by BobG on Apr 22^nd, 2003, 1:03am

Sorry you're in pain and had to come looking for us. It does sound like you may be suffering cluster headaches.
Do they wake you from a sound sleep? Do they come on after a drink of alcohol?
Have you tried an ice pack on the eye/face/temple? Or heat? Hot, black coffee sometimes works. How about going outside and deep breathing cold air?. Some people use strenuous exercise to beat the pain. Everyone is different and has their own way of coping.
Stick around and tell us more. It’s late tonight but someone will get some answers to you.

Title: Re: question for any C.H. sufferer, PLEASE
Post by Not4Hire on Apr 22^nd, 2003, 1:10am

michael...this is the *stock* reply/greeting: sorry you're here, glad you found this place..... there's a wealth of information to answer each of your questions...and the answer to all of them is ...mostly, yes....

...so take a deep breath, push ALL them butttons at left, READ yer ass off, and you'll find help and answers to your questions......i'm sure the following posts will say the same....

welcome and Good Luck.....

Steve(N4H)

Title: Re: question for any C.H. sufferer, PLEASE
Post by Callico_Kid on Apr 22^nd, 2003, 1:19am

Michael,

Sorry you met the beast, but I'm so glad you found us.

First of all, read all that you can from the buttons to the left. Take the cluster quiz. It sounds like clusters, but you need to see a Dr and get it checked out. Be carefull with the Tylenol. Overuse can cause rebounds that are not worth what little relief they can actually give you. Tylenol usually takes about an hour to fully get into your blood stream and by then the worst of it is usually over.
Some get relief with cold packs over the affected area. A frozen bag of peas or corn works well because it can be refrozen and used again and again. Others get relief from strenuous excercise. I sometimes get relief with heat, a heating pad or a hot shower will sometimes help.

You asked will they get worse? I don't know. Everyone reacts differently to them. I have had them for about twenty five years for a month or two once or twice a year, but since March of last year I have had only five small breaks. Others however have them leave and not return. Don't give up hope. There is a wealth of information available here, and some wonderful people who really care about the rest of us clusterheads.
Others will respond tomorrow, and you will get some great advice from them. If nothing else, this is a great place to be with others who really know what you are going through. Welcome to the family.

jc

Title: Re: question for any C.H. sufferer, PLEASE
Post by TerryS on Apr 22^nd, 2003, 1:52am

Sorry friend for the pain you have. Its been going on for me about 31-32 years now. If you can try sitting in front of and A/C unit and inhale the cold air through your nose, a car A/C will also work.

And like everyone else has said "read everything here you can!"

God bless and sometimes a little pray will help.

TerryS

Title: Re: question for any C.H. sufferer, PLEASE
Post by achinghead on Apr 22^nd, 2003, 7:23am

Michael, sorry for the pain that your going through, having no insurance compounds the problem even more. I would suggest that the next time you get one to go to your local fire department and tell them you need 02(oxygen) put it on 15ltrs a min and use it for 20 minutes.. if that works then go get yourself a tank and some 02.. welders 02 works so long as your not here in Northern Virginia.. I couldnt get it that way.. I had to get a script..However... You SHOULD seek a Dr.. insurance or not ... many of us have insurance but still have to pay for the meds(Imitrex) because of the allotted amount which isnt enough. Before Imitrex came out the only thing I could do was wait it out and fight it. I had to use ICE.. nothing else worked for me but the ice took the edge off some. I have had them going on 17 yrs now. My last 2 cycles have lasted 3 months each with 1-1/2 yrs between. For yrs they would last maybe 4 weeks.. hopefully this isnt a sign that they are getting worse.. Good Luck to you.. Seek the 02 and try and get a Doc.

Title: Re: question for any C.H. sufferer, PLEASE
Post by marty on Apr 22^nd, 2003, 7:50am

Hi Michael..

As to the question if they change in character.. I am going on 6 years (episodic) and mine has not changed yet and I hope that there will be no change since I have found a way to deal with them. I will see next month since they usually start in May and last through August.

Marty

Title: Re: question for any C.H. sufferer, PLEASE
Post by echo on Apr 22^nd, 2003, 7:54am

Reads like you are a card carrying member. Sorry to hear you are having problems. May as well stick the tylenol up your a s s for the good that it will do you in regards to CH. I have heard of virtually no sufferers that can be helped with tylenol as an abortive measure.

Welcome to the family

Title: Re: question for any C.H. sufferer, PLEASE
Post by Bob P on Apr 22^nd, 2003, 8:49am

I've been episodic for 32 years. The pain of the attacks hasn't changed over that time. What does change for me is the length of the cluster (my shortest was 5 weeks, longest 15 weeks) and the length of the remission between clsuters (used to be 8-9 months, now it's 2 1/2 years). I still get 2 to 3 attacks per day when in a cluster.

The streneous exercise thing worked pretty well for me. I'd do as many squats as fast as I could. Get the thighs burning and really huffing and puffing. Then sit down with an ice pack and the headache would leave in 5-10 minutes. Some people can kill them just by hyperventillating. Probably work even better with cold air.

The tylenol is useless. I used to take 3 asprin every 3 hours just for good measure. Wound up heaving blood from a duodenal ulcer.

Title: Re: question for any C.H. sufferer, PLEASE
Post by Drk^Angel on Apr 22^nd, 2003, 10:03am

Welcome to the board! Sorry that the beat has packed your eye socket full of gunpowder and gasoline, and shoved a lit road flare in your cranium to light it up. Welcome to the family! Good luck!

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

Title: Re: question for any C.H. sufferer, PLEASE
Post by Mikey on Apr 22^nd, 2003, 11:49am

Michael, all i can say, with having no Doc or meds, is ditto everybody above and Lord have mercy on you!

Oh yeah to answer your question about them getting worse? Yes they can, i went from Episodic to Chronic, and believe me brother you don't want to be there!

Mikey, ;D

PS. Keep us informed!

Title: Re: question for any C.H. sufferer, PLEASE
Post by Bonniegirl on Apr 22^nd, 2003, 12:30pm

;)Check your email, I sent you a message. Oh yeah, and as I was told, don't forget that IT WILL END. Just when you think it can't get any more painful, well,it will, >:( but THEN it stops.Remember that you will get relief, it will be over. You're not alone-Bonniegirl

Title: Re: question for any C.H. sufferer, PLEASE
Post by ddbackcatch on Apr 22^nd, 2003, 1:38pm

thank you everyone for your support and input i have no idea when this bout of pain will be over i havent noticed a trend or pattern as of yet i just deal with them as they come and when i dont have them, i forget what its like, one time it must have been several months.............i thought i was better.. and then it comes back like a monster and i just want to cry i think now i will keep a journal of my attacks when they come and how long they last and severity.... maybe this will help if i can ever go to get treatment from a doctor although that doesnt look to soon :(..... i am a self employed choreographer... and make barely enuf to live on with my fiancee and we are now planning a wedding.......arggghh ;)....she is so helpful and supportive of me ... i just hope thats enuf... thank you everyone i know i have people to talk to now ..like a new family.......................Michael

Title: Re: question for any C.H. sufferer, PLEASE
Post by miCHel on Apr 22^nd, 2003, 2:15pm

Michael,

Sorry you're going through some rough times. But do read the medical info on the left. And if you go see a doc, bring a copy. Maybe if you post what area you live in, someone can refer you right away to a good doc who knows the beast.

There are some good meds to deal with this : O2, Prednisone, Verapamil, Imitrex and many others. A lot of us have tried stuff, like Tylenol, antihistamines, nose sprays, etc, which was completely useless. Please make it a point to see a doc and finally have a fighting chance ASAP with that damn beast.

By the way, the advice you will get here is amazing! And the people are simply the best! Stick around.

miCHel

Title: Re: question for any C.H. sufferer, PLEASE
Post by oringkid on Apr 22^nd, 2003, 2:38pm

Welcome Michael! I have been episodic for 30 years. Mine have run very much like Bob P's. I don't take the meds for a bunch of reasons. 1) never found any that worked 2) the meds I did try seemed to make it worse (except for prednisone which worked well...while I was on it :() and 3) no insurance anymore.

My cycles have lasted from 1 to 5 or 6 months. I used to get them twice a year, then once a year, and now for the past...15 years or so, once every 2 to 2 1/2 years.

Ice packs are my first line. I found that sometimes if I put the ice pack under my bare feet that it will abort an attack. I found that drinking hot black coffee early on in the attack will sometimes abort it. I use heating pad or hot shower for comfort/soothing (doesn't do much for the pain) I may try the oxygen when my next cycle hits.

As everyone has said, everyone is different with CH. I get mine on my left side (once or twice, out of cycle I have had single, non repeating attacks on my right side) I get the tearing red eye, a slightly drooping eyelid and the nasal congestion on the pain side.

I did not get a correct diagnoses for about 12 or 13 years. You need to see a doctor so that they can rule out more serious problems. (I know, I was convinced I had a brain tumor too!)

Sorry you have this crap, but you're in a great place here. Lot's of great people!

Sherry

Title: Re: question for any C.H. sufferer, PLEASE
Post by CJohnson on Apr 22^nd, 2003, 2:44pm

Here are some cheap ways to possibly get relief.
A) Drink a lot of water
B) Get a nasal spray bottle, fill it with water, and keep it in the fridge. As soon as you feel one coming, do the following.

1. Go drink a bunch of cold water.
2. Irrigate the sinus on the side that is hurting with the cold water from your nasal spray bottle.
3. Go outside and start running/jogging. Breathe deeply.

I have managed to abort almost all of my headaches with this routine, within 30 minutes. Keep in mind, there is a very good chance that it won't help you, but then again it might, it can't hurt, and it will only cost you a couple of bucks for the nasal spray bottle.
You should really try to see a neurologist, though. Stop taking so much tylenol. It won't affect the CH.
-Curtis

Title: Re: question for any C.H. sufferer, PLEASE
Post by justin on Apr 22^nd, 2003, 4:43pm

hey man, i feel your pain. i'm almost 25 and been suffering about 3 years. my first couple of cycles were week and didn't prompt me to see a doctor. then they came back about 6-7 months after the initial attacks and were bad. they got worse the next cycle and now they have leveled off at unbareable. the only thing that aborts them is imitrex injections. at $60 a pop with a perscription you will need to get insurance. O2 helps a lot for the weaker ones i get at night, but still imitrex is the best. i use preventative meds like verapamil, depakote, and neurotin. where do you live. i'm in nyc if you need some names of neurologists. get yourself one quick...

jd

Title: Re: question for any C.H. sufferer, PLEASE
Post by firebrix on Apr 22^nd, 2003, 4:59pm

Greetings and Welcome ddbackcatch!

Glad you found the site but sorry you need it.
Hope you find something to help you soon; do check out the archives here and on the OUCH site (and join) as you may find something better than tylenol (which IMHO will not do a lotta good)
Have you seen a neuro? If you are worried about brain tumours, at least a neuro will be able to set up scans to see if or not your fears are groundless. Surely biting the bullet and paying for this info is better than worrying about it eternally?
Good luck and wishing you PFDAN
firebrix