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Topic: New Guy! Glad I found you! (Read 321 times) |
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hosua
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I have had Clusters for approx. 11 years now and guess what they are back. I use to have 3 cycles a year but, now they have seemed to last for the last 6 months without more than a week or two break. I am tired and last night just wanting any thing to stop them, including death. In the past I had great results with Imitrex inj and NS with Stadol NS rescue. The past few months the Imitrex is a joke and my legs look like a pin cushion. I had good results from Solu-Medrol IV until this last cycle and it only made me sick to my stomich and on top of the beast it just pissed me off. My neuro has said he doesn't know what else to try and his nurse questions the way I take the Imitrex and Stadol. If she only knew the pain she would not make me feel like I am the problem and that I am a junkie. I would much rather be headache free than take the inj and NS. I feel hopeless what should I do? I am lost.
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Drk^Angel
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Re: New Guy! Glad I found you!
« Reply #1 on: Sep 7th, 2002, 10:16pm » |
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Welcome to the board! Sorry that the beast is dropping a million red hot anvils off the top of Sears Tower, onto your head, over and over again. Welcome to the family!
PFDAN............................... Drk^Angel
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paul_b
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I love YaBB 1G - SP1!
 
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Re: New Guy! Glad I found you!
« Reply #2 on: Sep 7th, 2002, 10:33pm » |
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Have you tried O2? Many have good results if they catch the Beast early. Stress related to the onset of pain seems to be dominating as well as the pain itself. Time for a Vulcan mind meld ie. work on mentally leaving your body. It can be done with practice. Picture anything you want that is peaceful and focus on being there. Stay there as long as you can, don't force it, takes practice and its free. Good Luck. Stay in touch. paul b
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Charlie
CH.com Alumnus
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Re: New Guy! Glad I found you!
« Reply #3 on: Sep 7th, 2002, 10:41pm » |
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Welcome aboard. Sorry you had reason to find us but if you keep reading and posting, you'll likely find something here to help in some fashion.
Welcome to our world
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Georgia
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If ya don't like my peaches, don't shake my tree.
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Re: New Guy! Glad I found you!
« Reply #4 on: Sep 8th, 2002, 1:19am » |
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Welcome home. I am sorry to hear that your ch are back...but you are in the right place to find something that will work for you. May I suggest that you click on the buttons on the left of your screen...there you will find loads of information concerning what others here have found to manage their ha's, including medications (preventatives and abortives), oxygen use, water use, etc etc. You can also check out the OUCH site (again, button to the left)...there is a list of dr's by area that are recommended by other sufferers...sounds to me like you need to go into your dr's office armed to the gills with info from here, and/or find a new dr. Good luck and please let us know what else you have tried, if anything. If you have any questions....please ask. Again, welcome and sorry for your pain.
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Jim R
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Always question authority....
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Re: New Guy! Glad I found you!
« Reply #5 on: Sep 8th, 2002, 4:00am » |
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Welcome to the board and sorry you have to be here. I'm in the same boat right now - looking for the drug for this cycle that will work after having had past successes with verapamil (7 year remission) and lithium (1 year control-not working this year). I too have Stadol NS but find it doesn't help me all that much and be aware is is very highly addictive (I know - doesn't mean much when you're getting slammed hard by the beast - see earlier thread on "...controversial issue..." ). Right now on an increased dose of verapamil and Catapres, a blood pressure/CH med and havng very marginal results. I too use O2 and am probably having the best lcuk with this right now, but believe this is due to the effects of the two aforementioned drugs (O2 is funny with me - sometimes works, sometimes doesn't - but is working better than ever with these two drugs). Good luck in your search for relief and again welcome.
Jim R
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
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Melissa
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Re: New Guy! Glad I found you!
« Reply #6 on: Sep 8th, 2002, 8:47am » |
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Hosua,
There are many good suggestions you have been given, another one you might want to look into, is Dramamine. I've used it on my past cycle, and it helped take the edge off the pain for me. Also, since it seems Imitrex worked well for you, you might want to try that in combination with Oxygen. I'm sorry to hear you've been getting hit for so long, and here's wishing you pain free time from now on!
 Mel
on Sep 7th, 2002, 10:16pm, Drk^Angel wrote:| Sorry that the beast is dropping a million red hot anvils off the top of Sears Tower, onto your head, over and over again. |
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Drk? Where do you come up with this stuff?? LOL! 
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2late
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Ride Free..Pain Free
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Re: New Guy! Glad I found you!
« Reply #7 on: Sep 8th, 2002, 9:45am » |
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welcome aboard!! stay tuned relief is on the way!! ..............2late
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echo
CH.com Alumnus
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Chronic and still alive --- I Win!
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Re: New Guy! Glad I found you!
« Reply #8 on: Sep 9th, 2002, 9:16am » |
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Welcome to the group. Sorry you needed to seach for a CH support site. Now that you found us you will be able to research different ways of treating the beast and keeping it at bay.
I too use Stydol NS. Be carefull - I got hooked on it several years ago and it was a really rough to kick the habit. I still use it from time to time when I just cannot handle the relentless pain anymore. I had one hell of a rough weekend and went through a bottle in 3 days. Now I going through detox once again. sweats, twitches and easily angered. Another 3 days and I should be in the clear.
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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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hosua
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Re: New Guy! Glad I found you!
« Reply #9 on: Sep 9th, 2002, 10:57am » |
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Thank You for all of the encouragement. I am going back to my Neuro on Weds. Hopefully, the beast will be gone by then. I have started the water treatment and much to my surprise they have slowed and knock on wood my early morning wake up call did not come this morning. Now, if I could only be productive in the real world instead of going to the bathroom 24-7. Thanks Again.
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Linda T
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Re: New Guy! Glad I found you!
« Reply #10 on: Sep 9th, 2002, 6:11pm » |
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Dear hosua: Sorry you're having a rough time of it right now. It took my neuro a few months to find the magic bullet for me and I hope you find yours soon. It's out there. Don't stop looking.
Welcome. This is a great place to hang your hat. Stick around.
Wishing you all PFDAN always, Linda T
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What a long, strange trip it's been!
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