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kcopelin
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sick of it
« on: May 31st, 2005, 10:15pm » |
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Greetings.
went in for my weekly visit with the VA doc. Prednisone provided no relief this time-its so frustrating when this crap changes. Verapamil 240mg still, zomig, indomethacin, alprazolam (generic zanax), and vicodin. ??? I'm just so tired-sat down to read earlier-dozed for maybe 10 minutes and woke up with an 8 
My VaA neuro appointment is Oct 24.
Have tried melatonin-didn't do anything for me- tried chiropractic, massage, caspican, biofeedback, in the past- has anyone tried accupuncture? no word yet on the State disability stuff-still not working-
Thanks for letting me vent.
Kathy
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nani
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Re: sick of it
« Reply #1 on: Jun 1st, 2005, 9:52am » |
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Sorry you're having such a bad time, Kathy. I tried accupuncture once. I went twice a week for 2 months and it didn't make a dent in the CH. Helped me with lots of other stuff, though. Perhaps it's time for you to consider one of the alternatives? They don't work for everyone (just like every other CH med) but they're helping some significantly. Should you decide to go one of those routes, inform yourself fully, first.
Good luck and PF wishes, nani
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pattik
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Re: sick of it
« Reply #2 on: Jun 1st, 2005, 9:58am » |
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Having to wait almost five months for a neuro appointment is unthinkable.....what has our healthcare system come to  . Maybe you can explain the urgency of your problem and get seen sooner.
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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LeeS
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Re: sick of it
« Reply #3 on: Jun 1st, 2005, 12:51pm » |
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on Jun 1st, 2005, 9:52am, nani wrote:| Perhaps it's time for you to consider one of the alternatives? They don't work for everyone (just like every other CH med) but they're helping some significantly. |
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Ditto ... and all the best with it.
-Lee
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Jasen
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Re: sick of it
« Reply #4 on: Jun 1st, 2005, 1:02pm » |
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October?!?!?!?!
This is not right. Push your case, then push harder. Maybe they'll get sick of you calling all the time and get you in just to shut you up. But then again, I've never delt with the VA system.
Better days 
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If it was clusters of cash, I wouldn't complain
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kcopelin
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good grief
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Re: sick of it
« Reply #5 on: Jun 1st, 2005, 3:27pm » |
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Thanks all-am looking into alternatives-my doc swears she will light a fire under the neuro department in Sacramento. I told her I would go camp out in their waiting room, day after day, until they have a no-show and can work me in. I also told her I am considering alternative treamtents and if the VA can't do anything we need to push for my service connected CH to be compensable-that means $. maybe that will get a response n'est pas?
Kathy
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Gator
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Re: sick of it
« Reply #6 on: Jun 1st, 2005, 4:12pm » |
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This is the kind of treatment the oh so beloved veterans get, Pattik. At least those vets that can actually get treatment. The VA operates like the military (only slower) and the military operates on the prinicple of "Hurry up and wait."
October is a long time away, even for the VA, Kathy. I'm thinking I'd be running them ragged and driving them crazy until they made it sooner.
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kcopelin
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good grief
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Re: sick of it
« Reply #7 on: Jun 1st, 2005, 9:31pm » |
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Gator, you know its a fine friggin line between being assertive, informed and strong-and being considered a hysterical woman-needing psychotropic meds-who probably just has meegraines. this just pisses me off-and guess what? anger doesn't make the ch better.
i really hater this crap. thanks for listening-gezz, maybe I am just abn unreasonable bitch. 
kathy
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TonyG1
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KC -- I think Gator is right ... that is a long time for an appt. As a vet, I think I would be asking someone why the waiting list is sooooo long ... 
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| « Last Edit: Jun 1st, 2005, 9:47pm by Tony3901 » |
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Conrad
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Re: sick of it
« Reply #9 on: Jun 1st, 2005, 10:55pm » |
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Do you use oxygen? If so I'm sorry for asking, just did not see it mentioned here. Zomigs work pretty good for me, and I can side with you on the prednisone. I'm coming down off of an 8 week bout with the pig myself and it did not help me this go around which stunk. Hate you are hurting, really hope you get in to see a doc a lot sooner, you need it, screw that long ass wait! When did you get some good sleep last, I know you could use some. 
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kcopelin
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good grief
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Re: sick of it
« Reply #10 on: Jun 1st, 2005, 11:32pm » |
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to sleep, perchance to dream, ah there is the rub for in that sleep of death what dreams may come when we have shuffled off this mortal coil...ohmygawdIquoting shakespear now-HELP!!!!
last sleep-4 weeks-since then only 45 to 60 minutes at a time- thats why my doc insisted on vicodin and xanax-if i don't sleep they may hospitalize me which would suck so bad for my family.
i have exactly 3/4 tank of O2 left-use it for night attacks-zomig-have 4 dose left-emergencies only-however-I do have plenty of frozen peas and a bunch of friends at this site who know wtf this is like. Man, I cannot believe i'm being such a potty mouth. sorry
pfdan to y'all
this really will pass-it ain't killed me yet-24 years
i am stong i am invincible i am woman (now its helen reddy-i gotta get some sanity)
kathy
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clusterf__ked
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Re: sick of it
« Reply #11 on: Jun 2nd, 2005, 3:45pm » |
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kathy,
so sorry to hear of your experiences...hope you find some relief...your reactions are reasonable based on what you've been through.
a few questions i have for you (and for the general population of CHs): do you smoke, and if so, have you stopped?...do you drink, and if so, have you stopped? not trying to patronize here, just wondering since many articles say the vast majority of CHs are smokers and that alcohol can be a trigger...i've found that during my annual episodes if a suspend my drinking i fare much better, plus i am not a smoker...just curious to see what others have experienced regarding these issues.
steve
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Jonny
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Re: sick of it
« Reply #12 on: Jun 2nd, 2005, 7:53pm » |
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on Jun 2nd, 2005, 3:45pm, clusterf__ked wrote:| during my annual episodes if a suspend my drinking i fare much better...just curious to see what others have experienced regarding these issues. |
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Yup, your new......drinking booze is a trigger for about 95% of clusterheads.
Grab an oar and keep reading....sorry you had to find us, but glad you did.
The oar is to keep this boat rowing, we all kick in.
.......................................jonny
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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kcopelin
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good grief
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Re: sick of it
« Reply #13 on: Jun 2nd, 2005, 10:43pm » |
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haven't had a drink in 8 years-found that even one glass of wine could trigger-have smoked-then quit-then smoked again-(easy to quit I've done it a hundred times)no apparent effect on the clusters though i know i know smoking is bad/stupid/smelly/awful/eceteraecetera.
Thanks for the encouragement-rowing bes easier with others to help
kathy
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Sandy_C
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Re: sick of it
« Reply #14 on: Jun 3rd, 2005, 1:41pm » |
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"during my annual episodes if a suspend my drinking i fare much better, plus i am not a smoker...just curious to see what others have experienced regarding these issues. "
I am both a smoker and a drinker - during my episodes, Icontinue to smoke - seems to make no difference whatsoever in my Ch, but I absolutely cannot touch alcohol in any form. I can drink only coffee or water, water, water. Even one tiny sip of wine or beer sets the Ch off big time. However, the upside is, when you don't consume alcohol, you will lose weight. Hell of a way to diet, but there's a silver lining in everything.
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TonyG1
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In cycle ... alcohol is off limits... otherwise it is an open invitation to the beast to decapitate me and hand me my head on a platter ...... 
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burnt-toast
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Re: sick of it
« Reply #16 on: Jun 5th, 2005, 10:58pm » |
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kcopelin
Your situation with the VA is unbelieveable. Have you considered writing a letter to the head of their neurology dept. - requesting a response for the lack of responsiveness? Sometimes having to give a formal response to a well written letter can highlight problems and get results.
THe word on accupuncture seems the same as everything else for CH - works for some, not for all but its worth a try. Probably the best option in regards to side affects.
Sandy_C
I had always loved a beer or two when I was cooking, no hard stuff, just beer. My symptoms are chronic and I can definitely attest to the fact that drinking just 1 beer is the biggest mistake I can make. Instant trigger, massive intensity, long duration. In the last 10 years I have paid dearly for every beer I have mistakenly
enjoyed.
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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burnt-toast
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Re: sick of it
« Reply #17 on: Jun 7th, 2005, 7:27pm » |
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kcopelin,
You can obtain better acupuncture information that I provided yesterday using the following address. Hope it helps.
Tom
www.medicalacupuncture.org/aama_marf/journal/vol14_1/case1.html
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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