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New to forum but not to CH (Read 794 times)
Sdweb75
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New to forum but not to CH
Mar 4th, 2013 at 7:21pm
 
Hello all my name is David, I have had three bouts with CH the time between was about 3 years, the problem is I have been chronic for the last 18 months. I have very fews day that I do not have at least one and most day I have two, from 2:00 PM to 6:00PM and 9:00PM to 1:00AM. I leave work at 5:00 so I do not get much sleep. I have been to a neurologist and regular doctor they seem to blow me off, I am at my end right now, almost ready to give up. I am trying to read as much as I can but the pain is so bad it is hard read or keep my mind focused. If you have any recommendation please please let me know. I have asked my doctor about the oxygen but she said she would have to research it, I still have not gotten a reply. Thank You
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Guiseppi
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San Diego to Florida 05-16-2011


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Re: New to forum but not to CH
Reply #1 - Mar 4th, 2013 at 8:09pm
 
Where are you from? Maybe we can point you to a doc that's a little more up to speed.

First and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

These are the most recent stats...

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%.  240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH...  78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free.  Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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ndhillst
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Re: New to forum but not to CH
Reply #2 - Mar 4th, 2013 at 11:36pm
 
David,
This is your life and your pain and you have the right to seek other opinions.  If your neuro isn't helping, find one who will.  As and example, my neuro immediately got me O2 as an abortive and started on testing preventatives in parallel with other testing (MRI scans).  You have the RIGHT to have your symptoms believed and get the best possible care, even if it mean different doctors.

There are resources on this board who can recommend those they've worked with, so if you tell us your location, I'm betting there is someone can recommend someone.  You can also visit the OUCH website (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; They have a list of recommended doctor there, as well.  Remember, not every GP or even Neurologist knows much about CH.  Mine has treated me effectively, but he admits he sees maybe 2 a year and his knowledge only goes so far.  Had the combo of Depakote/Verapamil not worked, we were considering getting me into one of Phoenix's top headache specialists who has much more CH knowledge.

I also agree with Joe on the supplements.

Best of luck, David, and don't give up.
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wimsey1
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Re: New to forum but not to CH
Reply #3 - Mar 5th, 2013 at 8:22am
 
Sdweb75 wrote on Mar 4th, 2013 at 7:21pm:
I have been to a neurologist and regular doctor they seem to blow me off


I notice the word "seem." How so? Have they totally ignored your pain, or have they refused to address you are in pain? blessings. lance
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