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Topic: Neurologist (Read 234 times) |
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dino6130
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Neurologist
« on: Aug 20th, 2006, 11:02am » |
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Hello all,
First of all, thanks for all of your help through this. It seems that the only people who know anything about this disorder are you guys. I went back to my doctor to let her know that the imitrex pills really weren't doing mucn except draining my pocket book. What's the point of taking a pill if you still have to suffer through the attack. She prescribed imitrex nasal spray which really doesn't work either. She recommened me to a neurologist which I will make an appointment with next week. Anyone else dealt with neurologists?
I'm really kind of pissed off that there really is not much known about this disorder. Unless you've experienced it, people really don't seem to care. I can't believe there is no known cause, or a scientific name for cluster headaches, or even what causes shadows. That's kind of ridiculous.
I've clockworked my clusters to 3 a day. Usually late morning to early afternoon. Late afternoon to evening, and of course about 2 am in the morning. Of course there are shadows throughout the day.
If anyone has gone to a neurologist, was it helpful, or is it a waste of time also?
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Charlotte
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Re: Neurologist
« Reply #1 on: Aug 20th, 2006, 11:20am » |
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I just went on 8-4-06, and it was helpful. I dreaded it but it was not so bad. There is no magic. You have to be prepared, have your literature ready, your history ready, watch to see when he or she is listening, and it is still a crap shoot. It's a lot of work on your part to be ready.
Let us know when you go & we will vibe & pray like fiends for you.
Charlotte
Here is a link to OUCH Headache Comparison Table.
http://www.ouch-us.org/chgeneral/hacomptable.htm
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| « Last Edit: Aug 20th, 2006, 1:28pm by Charlotte » |
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nani
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Re: Neurologist
« Reply #2 on: Aug 20th, 2006, 1:06pm » |
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It depends on the neuro, really. The best ones for us are either very informed on CH or they are willing to listen, and work with us. Char is right, have your literature ready, inform yourself, and see if you can get the help you need. Good luck and pf wishes, nani
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Bond007
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Re: Neurologist
« Reply #3 on: Aug 20th, 2006, 6:28pm » |
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The OUCH website has a listing of neurologists who've been recommended by fellow CH sufferers. Check it out to see if any on the list are near you. Definitely have your literature with you when you go. You may want to ask whomever answers the phone what experience and/or knowledge the neuro they work for has about CH. Definitely interview the doc as well. If you're not comfortable them, then you're not going to trust his/her decisions on your course of treatment.
Otherwise, a neuro is definitely the way to go. They should know more about CH than your GP and they should also be better equipped to help you deal with your pain and help you manage it as best as you can.
I really like my neuro.
Best of luck to ya!
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Jobette
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Re: Neurologist
« Reply #4 on: Aug 20th, 2006, 10:47pm » |
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You have to realize also that they (drs) are human too and subject to fail. No on wants to admit that they are wrong or that they don't have the answers, but... only you can tell if the treatment is working and how it makes you feel. The imetrex pills are no good for this baby. I have to use the nasal and save the injector for the bad ones, or for the second try to kill the beast.
I have learned from this precious site that it is up to you to find you own bullet to slay this dragon. Hang in there and research this thing. O2 helps alot but... for me, it doesn't completely stopped them, but it helps. Just don't give up, and don't settle, because the drs only know what you tell them. It is up to you to do the rest. 
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