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Topic: Hello everyone (Read 210 times) |
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Axis
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Just stoped by to say hello and look around, But as I type I feel the black cloud decending on me so I must go for now 
Rod.
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Charlie
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Happy to be here
    
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Re: Hello everyone
« Reply #1 on: Oct 4th, 2002, 4:55am » |
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We all know of that black cloud. It's something all clusterheads know too well. In any case, welcome aboard and when you can, come back and tell us more. If you stick around, you'll likely find something here to help in some fashion.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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2late
New Board Hall of Famer
Ride Free..Pain Free
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Re: Hello everyone
« Reply #2 on: Oct 4th, 2002, 5:20am » |
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welcome to the board Rod, sorry to hear the beast is havin' his way with you, this is the place to be! like charlie said when you're up to it, give us some backround info about yourself. .........2late
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NancyMcFree
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Yea, what 2Late and Charlie said ... come back when you are up to it and in the meantime, welcome.
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echo
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Chronic and still alive --- I Win!
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Re: Hello everyone
« Reply #4 on: Oct 4th, 2002, 8:28am » |
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Welcome to the group. Hope you stick around and help us row this cluster boat. Sorry to hear that the cloud has decended on you.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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Drk^Angel
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Welcome to the board! Sorry that the beast is gougin' your eyes out with broken shards of glass, and stabbing your cranium with a white hot rusty ice pick. Welcome to the family!
PFDAN.............................. Drk^Angel
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Peppermint
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Work it out baby!
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Re: Hello everyone
« Reply #6 on: Oct 5th, 2002, 1:08am » |
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Welcome to the site!
You will find lots of info here, take a look around...
PF (pain free) times to you to come...
Geez, Drk , you sure have a way with words..
Peppermint 
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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Axis
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Back ground info on me hmmm, Not sure where to start or how much info you may want so here it goes till my cloud returns......
Frist off let me say that I cant spell very well and its gets even worse when I'm under my cloud 
I started getting mine back in my low 20s ( 39 now ) I get them 3 to 5 months of the year at about the same time each year, With 3 to 6 clouds per day, The worse one comes 1 hour or so after going to sleep.
7 years ago a little old DR. here in Jacksonville that my mom talked me into seeing asked me what all I had used to fight my CHs and after I gave him a some what long list of meds none of which were pain killers he offered me a med called Cafergot Tabs and the next 6 years were great not one CH at all, I took 1 tab per day starting 2 weeks before my season and kept it up till 2 weeks after and It worked great, BUT Last year they pulled Cafergot/Ercaf Tabs from the market because they didnt make enough money ( 100 Tabs for $70.00 )
So now my clouds are back and started about 8 weeks ago, My DR. now has me on Trex and while it works it only holds them off for about 4 hours.
In the mean time he has been giving me this and that to try and prevent them, But with no luck.
Last week he started me on 180MG of Diltiazem XR for blood pressure, Now I dont have High BP But the med is used to prevent CHs, Its a wait and see game right now.
The one thing that sits this year apart from all others is the fact that the pain is 50 fold worse then it has ever been.
Now until about a year ago I had my own company and worked 6 days a week ( was in the 100K a year group )
But I got hurt real bad in a dumb slip and fall at a local store, Bad enough that I had to shut down my company and file for bankruptcy, Over the last 12 months my wife of 16 years and I have lost everything, We moved from a 250K house to a rented mobile home in a park and now drive a used truck. Thats the good part, The bad part is we lost our insur as well and had to get new insur thur the city with Shands Jacksonville, They were working to get me back in shape or should I say the best shape they could when my season hit and messed everything up, I cant make it out the front doors most days so going to the 4 diff DRs every week just went up in smoke, But the CHs take over my life and no matter what else hurts or how bad it hurts it just dont compare to a CH. What gets me is the lack of DRs in Jacksonville that even know what a CH is or how to treat them.
I may be jumping around a bit and I'm sorry guys But I'm in a bit of pain from my last hit so bare with me if you can.
This is a list of Meds used so far this year......
Bellergal, Now when I told you my CHs were 50 fold worse this year, Its because of this med, I took it for 2 weeks and all that Hell had to offer came down on me, The DR thought it would work because its a member of the Cafergot family.
Others that I used ....
trex,
Maxalt,
Axert,
Toradol,
Wellbutrin SR,
and the Calcium channel blockers ( Blood Pressure ) That I'm on now.
My CHs were always bad but not to a point were I could not get from room to room and I was always able to get over one in about 15 to 20 mins, But now I live in pain day in and day out and even went to the ER for the frist time in my life with one 2 weeks ago only to have the ER DR. give me a shot that knocked me out for about 4 hours only to wake up too the worse one yet this year.
My pain is to a point now that I feel like I'm going to die before it ends, I cant walk, sleep, eat ( lost 30 pounds so far ) Leave the house, Talk on the phone or play my on line game EQ because of the light, Light and heat seem to set it off real bad, And now they last from 30 mins to 4 hours and I remain in bad pain even after the CH is gone, I will hit myself in the legs as hard as I can sometimes or pull hand fulls of hair from my chest, I even pull the skin off my lips to get my mind off them, And I'm sure you all know that to cry is to make it hurt worse but I cant help it and the more I cry the more it hurts, It will get so bad that I have my wife bring me Ice to rub myself down or get into a cold shower and let her rub my back and back of my neck with the Ice as the cold water hits me from the front, I know its about to leave when I start to get cold and it will leave as fast as it came.
I've pushed myself far enough for now and must return to my dark room and fight it again, Sometimes I just wish I would go to sleep and never wake up because I know he is always there waiting on me, Just waiting to strike out and try to break me and I fear that he has come very close this year.
Rod.
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Axis
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I knew I forgot something,
The point of the city insur story was that they only give me 9 50MG pills of trex and 4 6MG shots per month to fight 3 to 6 CHs per day.
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Opus
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Re: Hello everyone
« Reply #9 on: Oct 5th, 2002, 3:17pm » |
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Axis, There is an Imitrex tip on the buttons to the left that can increase your supply by three. You can also do this.
I got this from the OUCH web site
Need More Imitrex?
If you need more Imitrex then your insurance company will provide and your doctor is willing to prescribe it, you can contact Glaxo Smith Kline directly, They have a division called "Reimbursement Resource Center" ( the name implies you have to pay up front, but that is not the case), Call them at 1-800-745-2967 option #4, give them the information they ask for, your doctor's name & number, insurance company info, etc. and they will assign you a case worker who will contact you insurance company and hopefully get them to increase the number of doses.
It worked for me. PJB
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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Axis
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Thanks PJB and everyone else that posted.
I am in fact PF right now and it feels great.
I did call them about the trex this past thursday and they said they would call me back on monday and that they could help me get more each month which is also great news
I hope I didnt give too much back ground info on myself or home life, It was not to be as a sob story, Just to point out that no matter what happens or where you stand in life CHs will still get you, And as far as what has happened to my wife and I, I know theres an up side to it so we just keep on going.
I had a cat scan last week and I'm going for an MRI in 2 weeks because the doctor is a little worried about how bad my CHs are this year and wants to make sure that it is indeed the CH and not something worse. God it feel so good to come here and post PF hehe and I'm so glad to have found you all because till last week eventhough I knew I wasnt the only one I felt like I was because I had never met anyone else with CHs before and to tell you the truth I was so bumed out over people telling me that all I had was a bad MG.
But anyways take care and see everyone later.
Rod.
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Mark C
CH.com Alumnus
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Onward through the fog.
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Re: Hello everyone
« Reply #11 on: Oct 6th, 2002, 9:55pm » |
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Hello Rod and welcome,
I too am new to this site and I think I finally found somewhere I belong. I am sorry about your pain, I share all of the swirl of emotion, pain, worry, hopelessness and fear of what to do and how to survive such a horrible disease.
I was looking at the list of meds you have tried and I can lay claim to most of them also, without much help.
In the last of couple of years the only meds that have had any effect for me has been Zomig and Imitrex injection. I know we all are diffrent and what works for one may not work for another but these drugs do help me. The irony is finally finding something that has ANY effect at all and then having to fight stupid PF insurance companies for miracle drugs only Bill Gates could afford.
Last year at Walgreens Zomig 2.5 mg was $16.00 ea.
This year it is $24.49 ea, why? Imitrex injection is $130.00 per 2 dose pack. Thats $65.00 for 6mg.
But it works. Doctors, more samples please.
I am glad this forum is here, I was getting very isolated from humanity and that is not healthy either.
PF for about 12 hrs now.
Hurray,
Mark
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