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Kimmers
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Life is what you make
it....


Posts: 11
Kirby, WY / US
Gender: female
Hi
Oct 19th, 2014 at 1:45am
 
Hi fellow CHers its been awhile since I have been on here so I will take a moment to reintroduce myself.  I have had CH 11 years now..  I was diagnosed back when I was 27 I was out of the Army working as a CNA and going to nursing school when the beast introduced himself.  I went to one neuro who was not understanding so I got a second opinion and there I was told I had CH.  I lived in Kansas at the time life threw me some curve balls following nursing school and I moved back to Montana.  There I ended up hospitalized for the beast.  This happened one other time and since then I have found there is nothing that the hospital can do for me that I cant do at home so hospitalization has been awhile but er visits a little but again avoided if possible. I have tried all the suggested preventives without luck but do use Imitrex to abort and O2 and w some fellow CHers I m getting a higher flow regulator.  I'm also trying a D3 regimen along with B50 I am drawing at straws.  I have stumped every neuro I have been to to include the Mayo clinic who tried botox injection that didn't work.  Now I am bringing the D3 regimen to my latest neuro and he is jumping on what I came with so I'm hoping that it helps.  This past week has been particularly worse then what I have been dealing w in a while so I am a little discouraged but I am hanging in there I have my moments where leaning on a fellow friend who understands is helpful. So I hope I am welcomed back even though its been a bit.  Thx
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AussieBrian
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CH - It's all in your
head!


Posts: 3851
Cairns, Qld, Australia
Gender: male
Re: Hi
Reply #1 - Oct 19th, 2014 at 2:28am
 
Here we are, Kimmers. Ugly and smelly as ever.

Welcome home.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Hi
Reply #2 - Oct 19th, 2014 at 3:39am
 
Hi and welcome Kimmers

Fingers crossed that the D3 will do its magic for you. A few weeks ago I went over 1000 days CH pain free with its help, so it can do some great things.

For using oxygen, there is a great page full of everything you need to know at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. Have you got a non-rebreather mask sorted out?

With imitrex are you using the injections, nasal spray or tablets? The injections followed by the nasal spray seem to work best for CH.

For preventives that didn't work, the dose given may have been insufficient. For things like verapamil we tend to use doses much higher than what people normally use for their "normal" use, but far too often doctors don't know what is needed. So that is another possible option to explore.

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