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Just wanted to say... (Read 1387 times)
Mezteck
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Just wanted to say...
Aug 15th, 2008 at 12:16pm
 
Thank you for being around!
I'm a supporter, my boyfriend having just started experiencing these horrible things maybe 6 months ago (he's 21).
The first time I witnessed him go through this terrible event(which would have been his second or third time experiencing a ch), I was so alarmed I stayed up very late with him waiting for it to pass while I spent hours on the computer looking up a way to mild the pain or what he could be experiencing.
I learned about cluster headaches that same night. I read all I could about it, told him about it, and it broke my heart telling him he may have to live with it for the rest of his life. He ended up going to the doctor, getting the scans, etc. Luckily, his doctor already knew about cluster headaches. He suggested that was probably what my boyfriend was experiencing.
The doctor told my boyfriend quite a few of the things I already have told him through my own studies, including ways to rid the pain faster-ranging from legal to illegal and gave him a doctors note for oxygen. (he'd have to go to the ER though! Ew!)
I found this website yesterday, after watching him go through a real bad attack. I'm already learning so much more and finding all new ways I can try to help him with something I can do so little about!
So thank you again! It means a lot. I wish for many painless days for everyone.
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kevmd
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Re: Just wanted to say...
Reply #1 - Aug 15th, 2008 at 1:28pm
 
Welcome.  We appreciate you being a great supporter. He should get to a neurologist for several reasons.  How was the diagnosis determined?  Also, I never heard of an o2 subscription only to be used at an ER.  Sounds like you've done your research but get him on some preventative meds and if you or he has any questions....fire away
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PHILADELPHIA PHILLIES 2008 WORLD CHAMPS
 
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Garys_Girl
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Re: Just wanted to say...
Reply #2 - Aug 16th, 2008 at 6:57pm
 
I'm a supporter too - and this site has been invaluable! 

About the 02 - I agree.  You shouldn't need to go to ER to have access to oxygen.  It's available via scrip through many  medical equipment suppliers.  He needs a rebreather mask, and it should be delivered at 15 litres per minute (or more - you can PM Batch for more info) (which is a high flow rate). 

Did his doc discuss melatonin with him?  It's a good way for many to get sleep at night, and it doesn't require a scrip.  Smiley  He should start at 3mg.  Most seem to take between 9 and 15mg.  Gary's neuro said up to 18mg (each night) is safe.

Your BF is a very lucky guy to have you!

Laurie
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This is enough already
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Mezteck
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Re: Just wanted to say...
Reply #3 - Aug 17th, 2008 at 11:09am
 
Yeah, there's a lot of things I want him to ask his doctor for and such, but until he gets health insurance that may be awhile. For now, we make do.
Oh, yeah, I just googled melatonin.  I'll defiantly let him know about that one!
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« Last Edit: Aug 18th, 2008 at 12:23pm by Mezteck »  
 
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Sandy_C
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Re: Just wanted to say...
Reply #4 - Aug 17th, 2008 at 3:20pm
 
Welcome Mezteck!  We love our supporters and from your posts, you seem to be a great one for your guy.

What Gary's Girl, Laurie said is good information, with the exception that you need a NON-rebreather mask for the oxygen.  O2 has been a major Godsend to many of us, as an inexpensive, effective, fast abortive for a hit if you get on it at the first sign of a hit, with a regulator that goes to at least 15 lpm and a non-rebreather mask.  Regulators and masks can be bought on e-bay, and renting a welder's 02 tank is very cheap.  I have a huge tank - costs $56.00 per YEAR, and re-fills are around $16.00.  So, until he gets insurance, this may be an option for him.

The Melatonin has also been a great help to many for nighttime hits.  Most take a minimum of 9mg about 30 minutes before bedtime.  It might not work right away, sometimes requiring a week or more to get established in his system, so stick with it.  Does not require a scrip, I can buy it at the grocery store or health food store.

Keep reading and hit all the buttons to your left.  There is a wealth of information there that can help you.

Sandy
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Lean on me, when you're not strong, cause we all need somebody to lean on.
 
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Guiseppi
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Re: Just wanted to say...
Reply #5 - Aug 18th, 2008 at 10:36am
 
Welcome and bless your heart for being a supporter, my wifey has helped me keep my sanity with these damend things for about 28 years!

If you are unsuccesful at getting medical 02, consider welding oxygen. It comes out of exactly the same tanks as medical 02 and is perfectly safe for "human consumption" You just can't tell them you're using it for people use. PM Jonny for details on how to rig a welding tank for personal use. 30 years of battling beasty and 02 is still my first line and most effective treatment.

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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