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   Author  Topic: Questions for my neuro.  (Read 1822 times)
chefjohn
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Questions for my neuro.
« on: May 19th, 2008, 10:10am »
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Hello Everyone,
 
  I am going to see my neuro for the first time this Wednesday.  I have been putting together a list of questions to ask him as well as keeping a journal and doing a lot of research on CH.  I know that his time is valuable and I want to get the most out of this appointment.  Does anyone have any suggestions or questions that I should ask him.  Anything you can offer, even if you think that I may already have thought about it would be appreciated.  Thanks alot.
 
John
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barry_sword
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Re: Questions for my neuro.
« Reply #1 on: May 19th, 2008, 11:52am »
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Hi John. Sounds like you are organized for your visit. All I can suggest is to print off the info to your left regarding o2.  
100% o2 at 15 LPM with a non-rebreather mask and get on it at the very first sign of an on coming hit.
 
This works for most of us here as an abortive. You also should discuss what to take as a preventative. I take verapamil and with the right dosage it worked very well for me with my last cycle.
 
Others should be along soon with their own advise so hope all goes well for you on Wednesday. Please let us know how you make out.
 
   Barry Smiley
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Bob_Johnson
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Re: Questions for my neuro.
« Reply #2 on: May 19th, 2008, 12:34pm »
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I'd ask very directly about his experience with complex headache disorders, CH in particular. Too many neuros have neither skill, experience, or training in this area.
 
Tell him about this site and see if he is curious, is he willing to deal with material which you gain here--ideas, meds, etc. A doc who rejects/is hostile, etc. to at least listening is someone I 'd be inclinied to avoid. (All this assumes you have options re. another doc.)
 
Might print out the Rozen article and use is as a tool to discuss your options AND to test his willingness to collaborate in making a treatment plan.
 
http://www.plainboard.com/ch/chtherapy.pdf
 
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:
 
http://www.mhni.com/clusterheadaches.aspx#treating
 
 
   
 
« Last Edit: May 19th, 2008, 12:42pm by Bob_Johnson » IP Logged

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chefjohn
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Re: Questions for my neuro.
« Reply #3 on: May 19th, 2008, 1:24pm »
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Hey thanks Barry and Bob.  I am already on O2 and have a script for Imitrex Nasal, both of which work for me pretty quickly.  At first I went to the ER and it was before I found this site and the doctor there gave me a script for Prednisone.  40 mg for 5 days and then 20 mg for 5 days.  He didn't give me a script for verapamil  ( I guess because it needs to be monitored as you increase dosage and that is not the job of the ER).  What I learned here is to do up to 80 mg of Prednisone and work down to 10 mg over a period of 2 weeks while simultaneously taking low doses of verapamil and increasing them for the same first 2 weeks to a level that my body is comfortable with.  I'm finished with the prednisone and haven't started the verapamil yet so I'm gonna see if i can do 2 more weeks of Prednisone and start on Verapamil if he will allow it.  I don't think 2 more weeks of Prednisone is gonna kill me but I will have to ask him that and see what he says.  Also I have been getting no sleep in the past week (only about an hour at a time) and as soon as I reach REM sleep I wake up with a KIP 8/9 and I am on the O2.  So basically I have nothing preventative in me now and I am at the worst point as far as occurences are concerned.  Just thankful that i have the O2.  I am wondering f I can use something like Ambien at night and what that will do.  I have also been taking 9mg of Melatonin at night but I don't know how much that is helping.  Anyway thanks for your help and I'll let you know how it goes.
 
John
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debOUCH
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Re: Questions for my neuro.
« Reply #4 on: May 19th, 2008, 2:17pm »
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the only med i take is elavil @ nite, started with 10mg, and upped to 25mg..................i am "attempting" again to stop,(first ever cycle started 1/30), for i am hoping i am done.......tried b4, and came back..................it is actually an anti depressant, but aids in my sleep, as well as apparantly keeping the bease at bay................maybe u could try it..............(i believe it may be a "old" med for CH, however it has been working for me for over about 1 1/2 months.....................
hope all goes well
deb
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debOUCH
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Re: Questions for my neuro.
« Reply #5 on: May 19th, 2008, 2:19pm »
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i had taken ambie years ago, and i became extremely addicted to it, and was hard for me to get off of it! i am sure everyone has different reactions to it!
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Re: Questions for my neuro.
« Reply #6 on: May 19th, 2008, 9:52pm »
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john
 
bob's suggestion re:  taking the article written by rosen is right on-  i took that to my first doctor and it helped me engage in the right conversations.
 
I also take verapamil  and has kept the headaches from occurring.  
 
good luck
 
kelly
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chefjohn
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Re: Questions for my neuro.
« Reply #7 on: May 20th, 2008, 12:04am »
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Thanks Deb and Kelly. I took some Elavil years ago and that stuff makes you loopy (in a good way LOL) so I'll ask about that.  I have also taken Ambien when I fly to and from Europe and it works great but i have never yaken either on a consistent basis.  I wouldn't mind getting the scripts just to have them around.  I have printed that article and I am bringing it with me  I already gave one to my pharmacist nd the doctor at the walk in clinic which helped.  Thanks for your responses.
 
John
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jace77
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Re: Questions for my neuro.
« Reply #8 on: May 20th, 2008, 7:50am »
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Our first visit to the new neuro I took a copy of Dr Rosen article, highlighted treatments we had not tried, ask about MRI, labs to check everything I could think of such as testosterone, kidney, liver functions, glucose levels, thyroid, allergy, lyme, lupus and so on, of course everything was normal, but I had to make sure.  I was on a search to find the cause, and convinced myself that the endocrine system that holds the key.  Still no cause found, but did find the right treatment to say that on the 24th of May will be 100 days painfree.  Luckily our neuro will sit right down with me and go down my list of questions and treatments I have on the list and was willing to explore each of them.  He is absolutely incredible!  
Good luck!
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debOUCH
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Re: Questions for my neuro.
« Reply #9 on: May 20th, 2008, 8:24am »
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yes, john, it made me loopy @ the beginning, but then body gets used to it! i do need to take by 9pm @ night, the latest, or i do have a difficult time functioning in morning....i havent taken in 2 days, hopefully i am finally out of cycle..good luck at doctor! let us know how it goes!
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