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Topic: This doesn't make sense to me (Read 288 times) |
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PollyPocket
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This doesn't make sense to me
« on: Oct 7th, 2005, 1:09pm » |
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Hi all, I've been a clusterhead X20 years; about 9 years or so ago- after finally being diagnosed correctly with CH, I went to a neuro who really did nothing, asked me a couple of questions, I had an mri, and an eeg, which determined nothing, then sent me home with nothing.
I've been going to my family practitioner for meds each yearly cycle. I called him yesterday cuz the vrap isn't really working for me this time, and the nurse just called me back to say he may send me to a neuro for an evaluation. What for??? What the heck is a neuro gonna do for me that my doc can't, except order tests I don't have the money for (no insurance).
I see that a lot of you go to neuros; what do they do for you? Just prescribe meds?
Thanx,
Jen
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened.  " - Tori
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unsolved1
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Re: This doesn't make sense to me
« Reply #1 on: Oct 7th, 2005, 1:16pm » |
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You need to communicate that information to your doctor. Tell him/her that you can't afford to go to a neuro right now. Most neuro's won't see you unless you have insurance to begin with.
Goodluck'
UNsolved
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nani
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Re: This doesn't make sense to me
« Reply #2 on: Oct 7th, 2005, 1:19pm » |
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Have you tried oxygen, Jennifer? Remember to read the link on the left if you decide to try it. You can get a welder's oxygen setup without a prescription. PM Jonny or Mr Happy for details. You may want to consider the alternative methods we've discussed. No dr needed. Keep us posted, OK?
pain free wishes, nani
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| « Last Edit: Oct 7th, 2005, 1:20pm by nani » |
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Bob_Johnson
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Re: This doesn't make sense to me
« Reply #3 on: Oct 7th, 2005, 1:22pm » |
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http://www.headachedrugs.com/pdf/HA2005.pdf
Read all the material, even sections on migraine. Material which important to cluster folks is sometimes also common to migraine.
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Bob Johnson
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PollyPocket
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Re: This doesn't make sense to me
« Reply #4 on: Oct 7th, 2005, 1:33pm » |
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Update- the dr just called back. He is giving me Topomax for the next 4 weeks. I followed the threads regarding the med and am aware of the side effects others have had. At this point, its worth a try.
Nani, haven't tried o2 on my own, admittedly I'm a little afraid to. But when I had a hellacious 10 and ER trip, it never even touched the pain.
So I've been spared the neuro trip thus far.
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
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jcmquix
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Re: This doesn't make sense to me
« Reply #5 on: Oct 8th, 2005, 9:04am » |
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Hi Jen..
Nice to meet ya...
The Question about the Nero, I think myself its more of an insurance thing.... My GP Dr would not give me anything, except for samples when I went to him for CH, he told me that he would get into trouble with the insurance company. Then I basically had to tell the NERO what I wanted, they wanted to try all this different things I never read here before... But after I told them what I wanted and I get all my information from this site I got it.
As for the O2, I tried it also in the ER, it did nothing, but this last cycle was so bad that I bought my own O2 (Insurance would not cover it for CH) cost me about $200 dollars for a portable system and $10.00 refills on the tanks... After I practiced with it about a week, I learned how to abort HA with it, the O2 has been my first weapon of choice now.
Good Luck hope your cycle ends soon..
God Bless & PFDAN's
Charlie
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BMoneeTheMoneeMan
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Re: This doesn't make sense to me
« Reply #6 on: Oct 8th, 2005, 12:52pm » |
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Hi Jen,
Like most, you have to arm yourself with more info than the neuro can ever hope to have, and then you just have to use him to get what you want. Tell the neuro you need O2, and you need some other meds for preventative and abortive.
You said the 1 time you tried O2, it did nothing for you. I would try it again. Get a non-rebreather bag, and make sure you get the neuro to prescribe it at 15lpm, that way the O2 supplier will give you a regulator that goes that high. It might even be possible that you can simply talk over the phone with the neuro, that way you wont really have to have a doctor visit.
Oxygen is cheap, and works for more than half the people here.
PF wishes
BMonee
PS, if you get a neuro that knows a tiny bit about CH, Im sure it wont be a prob to just simply place an order with him/her for the meds you want to try.
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