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Re: help (Read 808 times)
Callico
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Re: help
Apr 13th, 2013 at 12:12pm
 
Rickus,

I don't know where you live, so that hinders advising you somewhat. 

I've had them for over 35 yrs, and never had to do short term, nor long term disability.  I've missed only a handful of days work in that time, and for several years I drove over the road.

Your Neuro does not seem to be up on CH.  I would strongly suggest you find a HA specialist or at least a Neuro who has successfully treated CH patients.  For one thing, if he is putting you on Verap, 20 mil won't touch it.  When I was using Verap I was up to 780/day.  Some get relief at 480, but 20 isn't worth bothering.  If he was knowledgeable about CH he would have prescribed O2 at a minimum 15 lpm with a non-rebreather mask.  Preferably 25 lpm or higher.  See the oxygen info button on the left of your screen.

Something you can do to abort hits is to slam an energy drink at the first sign on onset.  I carry 5hr Energy all the time because I can carry one in my pocket and get it down quickly.  Red Bull, Monster, Rock Star, etc. will work also, but you have to really chug them fast.  I can usually knock one back in about 5-6 mins.  It may not kill it completely like O2 will, but it will allow me to continue functioning, and will prevent it from getting high enough to keep me from functioning.  If I get hit badly while driving I will have to pull off the side of the road for a few minutes, but then I can continue on.

There is a lot of great info on this site.  Read, read, then read some more and ask questions if you don't understand things.  For sure, you need to go the the Meds. Treatments, board and read the 123 Days PF thread.  I know it is long, but it has worked wonders for a lot of people.

Jerry
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
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Jamz
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Re: help
Reply #1 - Apr 13th, 2013 at 1:40pm
 
Hello rickus, sorry you had to find this site.

I am in the same boat. Recently diagnosed with CH and having to take time off work, and have no real abortive medicine. This will be my 3rd week coming up. Working in a very loud metal fabrication plant as an IT personal. No way. I am currently on medical leave, living off 401k  Angry

Though from what I understand a lot of folks can work once the doctors find the correct treatment for us. It may just take some time. In the mean time direct your employers/co workers to this website. Try and help them understand the severity of CH as most people I know (I know quite a lot of people) have never heard of CH or confuse them with typical migraines.


Keep the faith my friend. You are not alone.
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Linda_Howell
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Re: help
Reply #2 - Apr 13th, 2013 at 5:01pm
 
Rickus,

    On the medications and treatments board there is a thread titled "123 days and I think I know why"  I know it's unbearably long and you might not have the patience to read everything, but you can get the gist of it quickly.  It has apparently helped tons of folks and it sure can't hurt to try it.
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Hurt people.....hurt people.   Think about it.
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