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I feel so helpless (Read 1828 times)
Lori Lee
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x0|Ruidoso|USA||0|0|NM,New_Mexico
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I feel so helpless
Sep 15th, 2009 at 6:29pm
 
My poor hubby has had hit after hit for 8 weeks now with no relief in site.  Went to our family doc & he gave us Prednizone (tapered) and it seemed to help, never stopped the beast in it's tracks, but as soon as the last pill was gone...BAM he was slammed again.  He is having 6-7 hits a day with 3-4 of em with a kip scale of 8-10.  He is super duper depressed and I am at my wits end trying to support him.  Just need to get things off my chest, thanks for being there!!
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Iddy
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Toronto,Canada
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Re: I feel so helpless
Reply #1 - Sep 15th, 2009 at 7:42pm
 
Please read the o2 tab on the left of the screen.

For many of us it's magic!

Cheers to you for being a supporter.

Information available on this site will educate the both of you. It will arm you with the knowledge nessesary to fight the beast.

All the best Smiley
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Walk in Peace

"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama
 
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Lori Lee
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Re: I feel so helpless
Reply #2 - Sep 16th, 2009 at 12:56pm
 
I forgot to mention that he does use O2 everyday, but the only regulator I can find only goes up to 15lpm.  He is going through 4 E tanks a day and at $12 a bottle, we are going broke fast.  Yesterday I got an H tank for him, thinking this was gonna save us a few trips to th O2 place this week, well the hubby is sooooo sleep deprived that at midnight last night he had a headache so he jumped on the oxygen & it took it away pretty quick & he layed the mask down for just a sec and fell asleep with the O2 on pumping away at 15lpm.  He awoke to an empty tank & a screaming headache at 4am.  He won't let me buy oxygen today because he knows we are strapped for cash, he was talking all crazy about suicide saying a bullet is free.  Our appt with the nuerologist isn't until Sept 28th, we can't get anymore Zomig until the 26th & now the O2 is eating our lunch.  He is on Verapamil 240mg twice a day...what do I do now??????? Cry
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Brew
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Re: I feel so helpless
Reply #3 - Sep 16th, 2009 at 3:38pm
 
Sounds to me like he needs to get back on the prednisone along with another preventative med like verapamil or lithium. Also some kind of long-acting abortive triptan that he can take along with the O2, like Amerge or Frova.

Look into getting some big-assed welder's tanks of O2. MUCH cheaper than medical O2, and they're filled with the same stuff.

Since he's being thumped so hard right now, you need to be the one to take the bull by the horns.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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QnHeartMM
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Re: I feel so helpless
Reply #4 - Sep 16th, 2009 at 9:04pm
 
Oh dear sure glad you wrote. Everyone here is behind both of you. Consider what Brew mentioned about the additional preventatives. My husband takes the 2 week prednisone taper while he ramps up on Lithium. Works well for him. He's also been taking melatonin which helps with sleep too. Good luck. Maybe in light of the bullet comment you can call and get him into the neuro sooner. Just a thought.
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Brew
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Re: I feel so helpless
Reply #5 - Sep 16th, 2009 at 9:16pm
 
One thing I feel I need to clarify: Prednisone works right away, sometimes within hours (for those for  whom it works, probably about 80-85% of the population). The other preventatives take 10-14 days to build up to theraputic levels in the body. That's why it's kind of a match made in heaven. Prednisone works for the first two weeks while the other stuff builds up, and nobody wants to stay on prednisone for very long beccause of the nasty side-effects.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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Kay
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Re: I feel so helpless
Reply #6 - Sep 17th, 2009 at 7:23am
 
I don't know your insurance situation or whether you have choices on doctors, but waiting until the 28th isn't acceptable.  If your not getting what you need (an appointment NOW), get on the phone and insist they put someone on the phone who understands what CH is all about and that waiting isn't an option.  I've been know to actually go to the doctors office and wait in office until I can speak personally with someone who understands.  You don't have to  be rude or overly pushy, but it's likely the people making the appointments have no clue what you guys are going through.  If they still can't do better than the 28th, and you have choices with your insurance, call around.  With this cycle we got right in with a doctor at a headache clinic on the day I called while all the neuro's didn't have availalbe appointments for weeks.
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