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Topic: Greetings from a grateful newbie (Read 302 times) |
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Callico
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Greetings from a grateful newbie
« on: Mar 28th, 2003, 2:41am » |
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Hi all,
I'm new to posting although I have been reading and learning from you all for the last several months. You were truly a Godsend as I was about to lose it when I found this site.
I was diagnosed with clusters about twenty five years ago and was episodic with one or two attacks a year or every two years until last March. Since that time I have been hit daily with only five breaks, the longest being two weeks. Most of mine range from a Kip 5 to a Kip 9 depending on the time of day. However, I don't seem to get a lot of them at night. I seem to have set into a pattern of 11am, 5pm, 9pm, and 11pm with the intensity increasing with each one. The one at 11pm particularly usually lasts about 45mins followed by a shadow of a Kip4 or 5 for upwards of one and a half or two hours. Is this totally unusual? (I occasionally am awakened at 3am with one but can usually return to sleep quickly.)
Fortunately, I work as an independent contractor with a very understanding boss and I don't have to show up for work on time when I have been up especially late, like tonight, and I can work into the evening if I can make it through the five o'clock HA.
Since I am techically self employed health insurance is totally out of the question. This has made most meds out of my reach. My Dr will not prescribe Oxygen without my seeing a Neuro. (Finally have an appointment with a Neuro at the end of April. Not sure how to pay for all the tests he wants to do.) Is there any way to get Oxygen without having to go through an MD? I know about welders oxygen, but what about a mask? Would a scuba set be sufficient?
Thanks for all the encouragement you have been to me over the last several months! You all have been such a blessing already.
God bless,
jc
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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ave
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Re: Greetings from a grateful newbie
« Reply #1 on: Mar 28th, 2003, 2:51am » |
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Well, sadly welcome here.
Good thing you read everything on the site and in sight. This place is the best cluster education you can get. For even more, go to the OUCH site (button left of the board) and read everything in the library.
You headache pattern is not uniqe, and as you experienced yourself, patterns will change from one episode to another.
It is great that you know about the welder's O2, but I think you need a special valve. Ask jonny about that!
Masks can be had at a medical supplies' store and are not that expensive. Be sure to get a non-rebreather mask!
Good luck, and come again.
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cathy
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Re: Greetings from a grateful newbie
« Reply #2 on: Mar 28th, 2003, 4:39am » |
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Welcome JC so sorry your getting hit so badly...and without much of a break... 
These guys will point you in the right direction as far as meds and O2 go in the meantime...keep us posted and wishing you PFDAN's
Cathy
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Roxy
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Re: Greetings from a grateful newbie
« Reply #3 on: Mar 28th, 2003, 9:32am » |
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Hi JC, and welcome. Sorry you had to find us, but glad you did.
What you need for the welder's 02 is a non-rebreather mask. You can buy one online if you can't find one in your hometown. A regular brass welding regulator will work, I think mine is set at 10-12. Just take a small piece of the 02 hose, and a piece of the medical tubing to Lowes....or somewhere like that. They have the connectors you need to hook the two up. jonny may know what the connections are called, but I don't. I just gave them to the little guy working there, and told him I needed to hook them together. Works like a charm. Dive equipment will not work.
It's really great that you have an understanding boss, it makes life a little easier.
PFDAN,
Tracey
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TomM
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Re: Greetings from a grateful newbie
« Reply #4 on: Mar 28th, 2003, 9:56am » |
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Welcome!
Many great people here with tons of knowledge. Pull a chair up, sit down, and stay a while.
TomM 
PS--yup...jonny know about the 02 stuff and will share his knowledge.
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Mark C
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Re: Greetings from a grateful newbie
« Reply #5 on: Mar 28th, 2003, 11:26am » |
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Hi JC
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jonny
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Re: Greetings from a grateful newbie
« Reply #6 on: Mar 28th, 2003, 4:11pm » |
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Kid,
E-mail me and I will hook you up with the info you need, this is not the place to post it.
.................................jonny
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