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Kiwiinoz58
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Help me please
« on: Jul 21st, 2005, 7:50pm » |
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Hi All,
Tis me again with questions. I know there are some on here taking huge doses of Verapamil, and I'm taking 640mg myself. But I'm still getting CH's of 9's each day and wondered if my dose just isn't high enough or it isn't working for me. Do the people on bigger doses get total prevention during a cycle?
As I've said before I had 8 months of CH's then 2 months PF, then 6 months of up to 9's most days again, then 9 PF days. Now it's been back for 7 days straight of 9's. Does this mean the Verap is not working for me or do I need to keep upping the dose?
I am sparing with the Imigran cos of the cost and the fact that after having it I still get 7's for quite a while.
My partner is great but this is affecting our lives something wicked and how long can I expect him to stay sympathetic when there seems to be no end in sight?
Thank goodness for this place and you guys but HELP please I am feeling like I'd rather be dead than face suffering like this for the rest of my life.
Jacqs
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nani
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Re: Help me please
« Reply #1 on: Jul 21st, 2005, 7:52pm » |
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How long have you been taking Verap? Some find it most effective when combined with another prevent (like lithium).
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AussieBrian
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Re: Help me please
« Reply #2 on: Jul 21st, 2005, 8:10pm » |
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Jacqs, all I can offer is moral support and you've got it aplenty.
Have you got your own O2? Otherwise try the hospital or the Ambos (they're usually pretty good about it).
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madaline
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Re: Help me please
« Reply #3 on: Jul 21st, 2005, 8:13pm » |
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HI, In response to your question: I have been taking 2 1/2 extended release Verapamil every night (600mg)for about four months. It takes a few weeks to kick in. They have minimized my day pains - I can go many days without an attack. However, the night pains still awaken me. I take an Indocin, and tonight I will be trying 15 liters of O2 to see if I can get rid of the Indocine. I ahve also started drinking a can of soda with my anti-inflammatory and I think the caffeine helps abort the attack faster. I have tried the lithium and it made me catatonic. I hope this helps, a little. Good luck. Madaline.
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Kiwiinoz58
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Re: Help me please
« Reply #4 on: Jul 21st, 2005, 8:37pm » |
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Thanks Mad, and no Brian no bloody O2 as yet, but I'm seeing the doc at 11:30 today.
Jacqs
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AussieBrian
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Re: Help me please
« Reply #5 on: Jul 21st, 2005, 8:48pm » |
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on Jul 21st, 2005, 8:37pm, Kiwiinoz58 wrote:| no bloody O2 as yet, but I'm seeing the doc at 11:30 today. |
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Karla
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Re: Help me please
« Reply #6 on: Jul 21st, 2005, 9:23pm » |
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I tried up to 960mg of verapamil and got an irregular heartbeat while on the medicine and had to quit taking it. It did nothing for my ch.
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Karla
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Kiwiinoz58
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Re: Help me please
« Reply #7 on: Jul 22nd, 2005, 12:32am » |
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Up date Brian & others,
Just seen the local GP and everything is organised for me to try the O2. It's a wee tad complicated to start with. He has teed it up so that when in pain I have to go to hospital and be admitted. Then they'll put me on the O2(required mask, amount, time etc). I'll have to do this for 2-3 times and if it works he'll then write me a script and I can get it from the hospital.
Then he insists I'll have to go back to my neuro and makes sure all is well and that he agrees with the treatment etc. That's a trip to Adelaide(780kms) but I have found out that because we live in a remote area I may be eligible for assistance for diesel and part payment for accommodation.
I must admit to being in tears today from the stress of all this, the pain and finally getting somewhere.
Thanks guys for the feedback and great support 
Cheers and Beers,
Jacqs
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burnt-toast
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Re: Help me please
« Reply #8 on: Jul 22nd, 2005, 1:50am » |
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on Jul 22nd, 2005, 12:32am, Kiwiinoz58 wrote:Up date Brian & others,
Just seen the local GP and everything is organised for me to try the O2. It's a wee tad complicated to start with. He has teed it up so that when in pain I have to go to hospital and be admitted.
Cheers and Beers,
Jacqs |
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That sure is complicated for O2 - How long a drive to the hospital? Is it possible you may not need the O2 by the time you get there?
I'm currently taking 720mg Verapamil with 1200mg Lithium and 9 mg Melatonin daily.
I'm fairly big 6'5" - 225lb and that's my limits on both Lithium and Verapamil. More Verapamil makes my feet and legs swell and more Lithium gives me hand tremors.
Everybody is somewhat different in how much they tolerate and I've seen some posts here where folks are taking higher doses than these.
This combo helps reduce frequency/severity of attacks but doesn't stop them. Missing a dose by just an hour or two can lead to some really aweful nights.
I'm looking for other options at this point.
Best wishes finding something that works - it sounds like you're getting hit pretty bad.
Tom
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sandie99
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Re: Help me please
« Reply #9 on: Jul 22nd, 2005, 3:08am » |
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Verapamil 600mg dose did it for me. I'm complitely PF!
I hope you'll find a med which works for you... 
Best wishes,
Sanna
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Kiwiinoz58
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Re: Help me please
« Reply #10 on: Jul 22nd, 2005, 3:18am » |
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Thanks Tom,
Luckily the drive to the hospital is only 5 minutes from my place and although a doc is not always available the head honcho person will be teeing up the nurses so that they are ready for me. As for the Verap my dose is only 640mgs so is perhaps not strong enough. Although my ECG and blood pressure are normal I am not happy about taking heart affecting meds if the buggers are not even going to work.
Cheers and PF nights to you,
Jacqs
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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Kiwiinoz58
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Couldn't ya just SCREAM
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Re: Help me please
« Reply #11 on: Jul 22nd, 2005, 3:21am » |
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oops and thanks for the hugs Sanna
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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paul_pero
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Re: Help me please
« Reply #12 on: Jul 23rd, 2005, 8:27am » |
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Hi Jacqs,
Glad to hear you are going to try O2. Hope it works!!
Its a shame you have to go through all the crap to get it though. Kepp us informed on how it works
Paul
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