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big guy
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New med regime
« on: Aug 10th, 2006, 7:01am » |
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I printed the "Update on therapies for cluster headace" by Todd Rozen and took it to my Dr. After reading it he has changed and added some meds. See what you think. Verapimil 540 mg a day, Prednisone 80 mg a day, Gabapentin 1200mg a day increasing to 2400 mg a day. He particularly wanted to add this since in the two small studies he could find all the patients became pain free within 8 days. 10 mg melatonin at night. Imitrex injection as an abortive. I was using Axert tablets to stop the hits but the 20-30 minute wait was just too much.
Now I just have to fight my insurance co. They declined to pay for the Verapimil at this dosage as above the recomended dose. It appears they will only pay for 8 injections in 20 days so I have kindly asked the Beast not to visit quite so often.
Here hoping for pain free days and nights for all of us
Big Guy
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Charlotte
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Re: New med regime
« Reply #1 on: Aug 10th, 2006, 8:17am » |
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Have you read the imitrex tip to your upper left?
I don't understand insurance companies. I guess they can't do math, but at least the tip will incease the number of ha you can treat.
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| « Last Edit: Aug 10th, 2006, 8:20am by Charlotte » |
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E-Double
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Re: New med regime
« Reply #2 on: Aug 10th, 2006, 8:39am » |
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Letters of medical necessity.
Neurontin made me very ill.
I think that only a few here had success but good luck!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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unsolved1
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I just wanted to point out 2 things:
(1) If you have not been at this dosage of Verapamil before ... you should watch your blood pressure closely as it may drop. (of course, other side effects should be reported asap also)
(2) 80mg of Prednisone is a LARGE amount. You can NOT do this for very long. If you take this amount for more than 1 or 2 days, you'll need to taper the dose. You MUST follow the dosing schedule exactly and do NOT just stop taking this med abruptly.
If you don't mind, plz post the Prednisone dosing schedule. "Inquiring minds want to know"
Goodluck
UNsolved
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big guy
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Re: New med regime
« Reply #4 on: Aug 10th, 2006, 8:35pm » |
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I have read the imitrex tip and will be using it. I worked up to this dose of verapimil. 180 then 360 now 540. I was first on 40 mg of prednison for one week then 30 for a week etc. Since it was not doing the job the Dr raised it to 80 for 8 days. Thats when I go back and he said he will set up the taper then. I will post it when I know. One thing I should mention is that Big Guy is not just a name. 6'8" and about 335 pounds so it takes a lot to be a full dose for me. A couple of times over the years I have awakened during medecal procedures when I was supposed to be fully sedated because the Dr did not take into account my size. But waking up during a needle biopsy of my lung was nothing compared to a Kip 10.
Also the Drs office is already working on the letters to the insurance company. He is not pleased to have a bean counter overseeing his medical decisions.
PF days and nights
Big Guy
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vietvet2tours
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Re: New med regime
« Reply #5 on: Aug 10th, 2006, 9:47pm » |
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Oxygen
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Kill em all let God sort em out
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unsolved1
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danm ... you ARE a big dude, huh!? 335lbs now ... I'll ask you that again in 8 days. I bet you're going to gain a few lbs !! PS. get lots of cookies. On that dose of Prednisone, you'll need the cookies !! (trust me) lol 
Goodluck & PF Wishes
UNsolved
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MJ
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Re: New med regime
« Reply #7 on: Aug 10th, 2006, 10:38pm » |
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Big dude or not be prepared at higher doses of prednisone for ugly attitude changes as well. Its only fair to warn those around you.
I've been much higher still.
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MJ
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sandie99
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Re: New med regime
« Reply #8 on: Aug 11th, 2006, 4:12am » |
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Big Guy,
Good luck! I hope that it's the recipe for PF time for you! 
In my case... I'm a small woman (145cm/50kg). 600mg dose of verapamil helped me to reach PF time back in 2005. The low doses, 200mg and 400mg, made my blood pressure drop - I fainted on several occasions. But that 600mg dose, that, for some reason, didn't.
I kinda miss my prednison days sometimes...I've taken it twice, the last time was a 4 week taper in 2004 and it made me one hyperactively happy person in duracell bunny way! Funny, but Finnish pred made me happy, UK one depressed. Interesting...
Wishing you PF time,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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big guy
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Re: New med regime
« Reply #9 on: Aug 11th, 2006, 6:07am » |
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UNsolved... You are right on about the cookies, and anything else in reach. Actually when I started the Pred the first time I was about 325, down from 365 plus, so the Predis already causing me to gain weight.I have been feeling like the energiser bunny, although I now feel like he keeps going, going, going but now he's gone. The pred causes your body to dump it's stored energy but when it"s all gone there is nothing left to give. One side effect of the pred. that's not bad though is I have arthritis in my knees from too many years of abusing them. My knees feel better than they have in 15 years. also my nagging lo back pain is gone. Thank God for small favors.
PF days and nights
Big Guy
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chewy
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Quote:| also my nagging lo back pain is gone |
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Gone or masked by the prednisone ? Pred has that annoying little effect of making you think and feel all is healed. Careful with the back.
Sounds like you have a decent Doc though.
Prednisone and appetite? When I am on the pred the neighbors keep their small animals indoors.
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unsolved1
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on Aug 11th, 2006, 6:34am, chewy wrote:
Pred has that annoying little effect of making you think and feel all is healed.
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I agree that Prednisone may cause you to have euphoriac feelings ('making you think and feel all is healed') ... but I wouldn't call that annoying. (IMO)
UNsolved
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rickyshot
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Re: New med regime
« Reply #12 on: Aug 11th, 2006, 8:27am » |
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Prednisone may mask the pain in the back or knee but is a killer for bone mass or density. Because I am only five foot two and 135 lbs and have been on many courses of it they give me bone density tests once a year. I take calcium with magnesium and Vit D daily and lift weights to counter attack this "benefit" of this powerful drug. I don't like it but can't argue with the results it gave me when I was at the end of my rope. I always felt squirrley and very aggressive. And the weight gain pissed me off 
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lashultz
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Re: New med regime
« Reply #13 on: Aug 11th, 2006, 8:47am » |
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Try having the Doctor give you a scrip for the imitrex vials as well. You only need half the dose most times and my insurance treats the stat dose and the vials as two seperate perscriptions.
Lee
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big guy
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Re: New med regime
« Reply #14 on: Aug 12th, 2006, 6:50am » |
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I am aware that the feel good from Prednisone is just temporary, but I will take any small good thing. Actually I have always felt that as a CH sufferer I have a very high pain threshold. There just doesn't seem to be anything else to compare to a Kip 10.
As a note my preventatives seem to be working and I have not yet used the Imitrex. Maybe just knowing it is there is scaring the Beast away. LOL
PH days and nights
Big Guy
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vietvet2tours
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Re: New med regime
« Reply #15 on: Aug 12th, 2006, 11:06am » |
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And more oxygen
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Kill em all let God sort em out
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big guy
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Re: New med regime
« Reply #16 on: Aug 12th, 2006, 9:43pm » |
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oxygen seems to be the one thing my Dr. is reluctrant to prescribe for me. I am not sure why. He has pretty much gone with my research on every thing else. Last night and today have been pain free as far as the CH are concerned. Maybe I won't need the oxygen this time. The brief relief from my knee pain brought on by the prednisone is over though. I knew it wouldn't last.
PF days and nights
Big Guy
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big guy
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Re: New med regime
« Reply #17 on: Aug 13th, 2006, 8:40am » |
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My first imitrex injection!!! The beast had been at bay for a few days only giving me shadows and interupted sleep. Ice paks, coffee and energy drinks were getting me through. this morning after my third shadow of the night I knew I should not tempt fate by going back to bed. 30 min later.. wham. Nose is running and the hot poker is in my eye. I get the ice but quickly realize its time for Imitrex, but where is it. Not where it is supposed to be. I must have looked pretty stupid digging through the same pile of stuff over and over crying where is it. finally remembered I took it in the car yesterday. Must have left it there. I run towards the garage and there in front of the door the dog has been sick and left a steaming pile where I can't even open the door. I almost wish I had a video. Holding an ice bag on my head with one hand trying to clean up the poop with the other and dancing and pacing and yelling that the dog was never sleeping in the house again. By the time I got the Imitrex I was thinking about the tips to ration it but I was too far gone. The whole thing in and start watching the clock. 5 minutes and relief is starting. 10 minutes and no pain at all. This is awsome. I am going to have to work on the rationing. It will be harder than I thought. The incentive to just get it in as fast as possible is very strong.
Big Guy
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serendipity
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Re: New med regime
« Reply #18 on: Aug 13th, 2006, 9:10am » |
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big guy, about the oxygen...my doctor was hesitant to prescribe it for me for some reason, as well. It took several cycles of me asking for it and him telling me no before I finally snapped. I had printed out all the great information on oxygen I could find on this site and sat there with him and asked him to read it (and not after his visit with me was over...right then!)
Well, he read it - what choice did he have? - and gave me what I needed, and it has been a life-changer for me. If your doctor won't help you get it, I would strongly suggest finding another doctor who is more up-to-date on the best treatment options for cluster headaches.
Of course there's a lot more to it than just getting your doctor to prescribe it for you. You have to make sure he writes the scrip for the correct liters per minute, the right type of mask, etc. Just click on the "oxygen info" link to the left, and it'll tell you and your doctor everything you need to know.
Best of luck to you! I hope you'll be completely pain-free soon.
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| « Last Edit: Aug 13th, 2006, 9:12am by serendipity » |
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chewy
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Quote:| I am going to have to work on the rationing. |
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Also start stockpiling when out of cycle.
Quote:| I agree that Prednisone may cause you to have euphoriac feelings ('making you think and feel all is healed') ... but I wouldn't call that annoying. (IMO) |
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I know. I was being fecicious. My point is carrying out a regular physical routine while on pred may worsen an injury simply because you no longer feel injured and neglect the reality of the injury.
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big guy
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Re: New med regime
« Reply #20 on: Aug 13th, 2006, 11:41am » |
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I go back to my Dr in a few days and also have a backup Appointment with a neuro if I need it. One of them is going to prescribe O2 for me, or I have been working on a connection at a welding supply
Big Guy
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| « Last Edit: Aug 13th, 2006, 11:42am by big guy » |
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big guy
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Re: New med regime
« Reply #21 on: Aug 15th, 2006, 5:50am » |
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Just wanted to post an update. Since I have been on this med regime I have only had two bad CH. One sunday morning and one this morning. I was having a lot of shadows that would wake me up at 2:30 and 4:30 am. I upped the melatonin to 15mg and I am now sleeping much better. Sunday and today I slept straight through till 4:30 am which is very unusual for me. Woke at 4:30 and new right away I was headed for a bad one. Tried the ice pack for a few minutes but when I passed a Kip 7 and still climping I went for the Imitrex injection. Blessed relief. I can't believe that some peaple are strong enough to try to beat this beast without heavy duty drugs. I guess I am just a woosy. When I hit an 8 give me the Imitrex. When I hit a 10 I would do anything for relief. I go back to the Dr later in the week and the neuro next week. Somebody is prescribing O2. I really want to try that.
thanks for listening
I hope you are pain free
Big Guy
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| « Last Edit: Aug 15th, 2006, 5:57am by big guy » |
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chopmyheadoff
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Re: New med regime
« Reply #22 on: Aug 15th, 2006, 8:51am » |
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good luck big guy . . keep us all posted 
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