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Topic: Wishing it would end (Read 268 times) |
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alchemy
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get out of my head
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Wishing it would end
« on: May 14th, 2005, 6:45am » |
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I was diagnossed with ch about six years ago. At first I would get 4 cycles a year, until the last two years where I have gotten a total of 4 months without these damn ch's. this last cycle is well into the fifth month. It is really hard on my family, as they are watching me slowly go insane. The doctors have tried just about everything in the med survey. right now I'm on verapomil, nuerontin,stadol, imitrex inj, and oxy's. I just joined this site the other day and what a blessing it is. I have been dealing with a world that has no understanding about ch's. I have attempted suicide in the past, the last time in november. finding a site like this helps in that regard. I pray for a weeks break so my family can relax and enjoy themselves, it kills me to see them suffer along with me. the docs want me to see a surgeon, I know nothing about this and the prospects don't sound thrilling. Anyway enough about me. just thanks for being here on this site and I wish you all pain free days and NIGHTS
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
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Re: Wishing it would end
« Reply #1 on: May 14th, 2005, 7:30am » |
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Hi Alchi! (God I amuse myself!  ) I'm sorry you are having such a tough time. I'm a bit concerned with that cocktail you are taking there.. I'm afraid there might be conflicts. I'm sure someone will be along in a bit with a link to a drug site where you can check that out. I'm sorry I haven't got it for you myself.
There are other things you can try before going down the surgery route which quite frankly terrifies me. Other people here have tried a DHE drip, others have tried alternative type treatments, try checking out the psilocybin and kudzu threads under medications and treatments for further information. I would however stress emphatically that anything you try you talk over with your doctor first. He knows your full medical history and will be in the best position to advise if anything would not be to your best advantage
What dose of verap are you on? Alot of us take that and on vastly different dosages so it might be worth talking to your doctor about upping that for instance.
How are you using the O2? How many LPM and are you using a rebreather mask? Its funny but if you aren't using it correctly its worse than useless and sometimes little tricks make such a huge difference in its effectiveness.
Keep in touch okay? If nothing else we can give you a bit of support and understanding.. here if no where else people know how you feel! 
Take care
PFDANS
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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E-Double
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Are we ourselves?
 
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Re: Wishing it would end
« Reply #2 on: May 14th, 2005, 8:32am » |
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Ya just brought back those memories of desperation.......
Welcome and many hugs!!!!
Remember peace of mind will help ya quite a bit and now that you found this place......
START BREATHING AGAIN and ENJOY LIFE!!!!!
This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
Ask for a script and if needed FIGHT fOR Oxygen...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Educate your doctors!!!
Good luck amd stay strong!
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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nani
CH.com Alumnus
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Got kudzu?
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Re: Wishing it would end
« Reply #3 on: May 14th, 2005, 9:52am » |
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Yes, stay strong!! Now that you've found us, you can lean on us for support and understanding. Do not let this demon win!! Read, read, read...information is your best weapon. Some helpful links:
For drug interactions:
http://www.drugdigest.org/DD/Interaction/ChooseDrugs/1,4109,,00.html
For alternative treatments:
Kudzu info:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1110584362
other alternative treatment:
http://www.clusterbusters.com/
For a great all around CH info site (written by one of our members, Floridian):http://med-owl.com/clusterheadaches/tiki-index.php?page=HomePage
Good luck and pain free wishes, nani
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Others may come and go, but MY power is MINE.
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KMT
New Board Hall of Famer
Fun loving @ heart
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Re: Wishing it would end
« Reply #4 on: May 14th, 2005, 10:32am » |
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Welcome to the family. Sorry you had a reason to search for us but glad you found us. Sorry you are hurting so much. Hope that you can get relief soon. Stay strong and don't let the beast win. I would give advise but I am in totally agree with E-Double and Nani...
Take care and PF wishes........Kim
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aka...................................................... KimY
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alchemy
CH.com Alumnus
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get out of my head
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Posts: 1639
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Re: Wishing it would end
« Reply #5 on: May 14th, 2005, 5:53pm » |
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Thankyou all so much. finally i don't feel all by myself out here. your kind words make a world of difference.  
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