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Topic: PLEASE HELP TWO YRS & IT's BACK (Read 591 times) |
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LasVegas
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Episodic CH since 11 yrs old, now 39.
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PLEASE HELP TWO YRS & IT's BACK
« on: Aug 4th, 2005, 1:04pm » |
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Hi all, For those of you on this site 2 yrs ago or even 5 yrs ago, I was suffering form episodic CH at those years and active on this site during those times. Well, unfortunaltely i'm back, THE BEAST IS BACK that is! It's been about 10 days or so now and I get them 2 to 3 times daily. My health insurance considers this a pre-exisitng condition so I can not get scripts, etc for another yr or so regarding CH's, not even O2. So, I need to play this a different way and could use some advice please take the time of you have something worthwhile t contribute...a friend of my Mom's in another state is a doctor. He is willing to wrote scripts for me and peel his name off the label (malpractive insurance reasons-well respected and understood) and have me pay cash for the meds, then have my Mom FedEx me what I need. So this is the good news! The bad news is that I forgot what to get...I have researched archives from my previous posts in 2000 and also Fall 2003 and have concluded that I was taking Prednisone and Verapamil as preventatives. And I was taking Imitrex shits and o2 for abortives. Here are a couple questions perhaps you would be kind enough to add your 2 cents....1. What are the minimal recommended therapeutic dosages for Pred and Verap. I need to let ths guy know how many pills of each and the mg amount of each. 2. Any special precautions for mailing these drugs FedEx or UPS such as sending with icepacks for temperature or if these drugs need to be packaged in a specific way to avoid losing potency. He will be sending me Trex shots also. So once again, what are the recommended daily doasges of Pred and Verap, what mg tablet do I have him order and how many should I order? If I recall correctly either the Pred or the Verap had a couple different type of pills. Anybody? Thanks in advance....Gregg in Las Vegas
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Wishing all a Pain Free 2008!
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StressFree
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #1 on: Aug 4th, 2005, 1:42pm » |
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My last round I took 30mg Pred three times a day initially. Started 180mg SR Verapamil once a day at the same time. Tapered off of the pred over a two week period. This seemed to work well with only a few bad break through attacks, and some constant shadowing toward the end. Took Maxalt tabs to abort breakthroughs. Also experimented using a TENS electrical stimulation to massage back of neck and jaw to abort some attacks and seemed to help manage the rest. There are posts on that and a treatment called ONS which is a surgery. Also many take much higher doses of the Verapamil if needed. I'd consult a general practicioner at least. I've heard it may take over a week for the Verap to start working! Best of luck to you, Rich
Modified to add - I'd stay on the verapamil for at least a month, perhaps 6 to 8 weeks depending on your history. And ensure tapering off of the Prednisone, and not to take it for more than a couple of weeks as you probably know.
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| « Last Edit: Aug 4th, 2005, 1:47pm by StressFree » |
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LasVegas
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Episodic CH since 11 yrs old, now 39.
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #2 on: Aug 4th, 2005, 2:04pm » |
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Rich and others reading and hopefully to reply to this....how does this sound for episodic CH sufferer?... I thought the Pred was 60mg daily for 7 days, then taper for 7 days. As for the Verap, think it is the SR tablet...240 mg daily and taper 2 weeks after CH cease. It has been 2 years since my last CH and can not locate any of my past archive posts relevant to my questions, so thought I would post this for anybody familiar with these meds to let me know if I am correct with the dosages/timelines or if my plan needs revising. HELP PLEASE....thanks in advance, Gregg in Las Vegas
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StressFree
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #3 on: Aug 4th, 2005, 2:42pm » |
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That sounds similar to what I've heard others have used. Can't go wrong with starting light, and increasing some if needed. Though you may not get a knock-out punch from lower doses? Let's hear some of the others experience with the dosage. I've seen pretty specific details on previous threads. You might look for "what works for you" and similar posts. Rich
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Bob_Johnson
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #4 on: Aug 4th, 2005, 3:02pm » |
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This is the most current thinking about treatment.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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LasVegas
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Episodic CH since 11 yrs old, now 39.
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #5 on: Aug 4th, 2005, 3:22pm » |
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Saw this article years ago, great refresher, thanks for the link.
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unsolved1
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #6 on: Aug 4th, 2005, 3:28pm » |
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on Aug 4th, 2005, 1:42pm, StressFree wrote:| My last round I took 30mg Pred three times a day initially. |
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I just wanted to comment:
90 mg of Prednisone a day is a HUGE amount. You couldn't take that much for long. Most Rx's start off at 60mg for a few days then ramp down.
UNsolved
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Kris_in_SJ
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #7 on: Aug 4th, 2005, 7:10pm » |
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I'm with Michael on this one. Pred at 60mg/day then a slow taper down. Meanwhile, Verapamil at 480mg/day. By the you taper off Pred, the Verap is kicking in. Personally, I've never found Verapamil to be very effective at less than 480mg/day.
The Trex dose is standard if you use autoinject. No more than 12mg/day total. That's 2 shots if you use it all, or more shots if you split doses (see the link to the left on Imitrex Tip). The Future Drugs article referred to above should verify all this.
Meantime, if you need O2 right away, PM Jonny about a welder's oxygen setup.
Best of luck and PF wishes,
Kris
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Bob P
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #8 on: Aug 5th, 2005, 8:49am » |
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Here's what Prof. Goadsby says about each:
Quote:
Steroids
Corticosteroids are highly efficacious and the most rapid-acting of the preventative agents. But caution must be exercised in using them because of the potential for serious side-effects. Treatment should be limited to a short intensive course of two to three weeks of tapering doses.
We start patients on oral prednisolone 1mg/kg to a maximum of 60mg once daily for five days, then decrease the dose by 10mg every three days. Unfortunately, relapse almost invariably occurs because the dose is tapered. For this reason, steroids are used as an initial therapy in conjunction with preventatives, until the latter are effective.
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verapamil
Verapamil is the preventative drug of choice in both episodic and chronic CH. Clinical experience has demonstrated that higher doses than those used in cardiological indications are needed, so outpatient assessment and follow-up is appropriate. The dose is increased until the cluster attacks are suppressed, side-effects intervene or the maximum dose of 960mg daily is achieved.
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StressFree
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #9 on: Aug 5th, 2005, 11:56am » |
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Sorry for the imcompetence on my part. It was 20mg tabs 3 times a day last round! You have had good advice here regarding the 60mg per day maximum for short duration. Although they did have me take it 4 times a day at one point - 80mg per day. My blood pressure went through the roof! Pounding heartbeat when I'd lay down at night. Kind of scary! They added Verapamil after the fact, and that helped. I definately didn't like the feeling of the high dose of Prednisone. High doses of Verapamil can have some unpleasant side effects also, but likely not so serious as that of Prednisone. Terribly sorry for the mis-information! Rich
Modified to add: Great link Bob_J! I hadn't seen that before. Very specific regarding Pred dosage and taper. Also a few new meds I hadn't heard of. Thanks.
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| « Last Edit: Aug 5th, 2005, 12:06pm by StressFree » |
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LasVegas
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Episodic CH since 11 yrs old, now 39.
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #10 on: Aug 6th, 2005, 11:46am » |
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Thanks for sharing
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docblondie
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #11 on: Aug 9th, 2005, 10:34am » |
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Hey LV,
Here is my dosage- been doing this since 1989--
The cheapest route;
80mgs of prednisone 7 days, 60mgs 7 days, 40mgs 7days, 20mgs 7days, 10mgs 3 days, stop.
While I do this, I start on verapamil sustained release 120mgs. (I have to be on low doses due to my already low blood pressure) If you're BP is normal, you may go on higher doses and, try the instant release of verap. This has a better success rate with Ch's.
I also add topamax 300mgs. but do this at a slow rate, 25mgs per week. The topamax and verap. are not cheap- so this may be costly- the pred. is very inexpensive.
The imitrex can be slpit into 3 doses per shot- you can do this by splitting the stat refill into 3 smaller shots to give yourself with an insulin syringe- or when you can- have your physician prescribe the vials rather than the stat dose refils.
I have never had to refrigerate any of these meds.
I live in Florida and have carried the imitrex in my purse, it has goten pretty hot and still been effective.
Good luck.
I have also had clusters for a while- since 1989 and now I am 37. It's a long, hard road.
This may be a sign that you are growing out of them- a two year break, the cycles may be changing and you may be getting over them- let's hope!
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ruskus
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #12 on: Aug 12th, 2005, 1:48pm » |
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I'm back after two years as well. This is the first time on equal footing with the beast. I never had a doctor worth a shit before by last episode. This time I was ready. At the first signs I got my scripts for my Verapamil 480mg SR a day and Topamax 25mg twice a day. I haven't gotten past a 3/4 on the Kip scale. Filled all my Imitrex scripts but hopefully won't need them. Its been almost a week and the pain is sliding back down towards a "0". Love that Doc.
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allan_r
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #13 on: Aug 12th, 2005, 10:41pm » |
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My neurologist puts me on a80 mg Predinose for three days, with a 10 mg taper each three days.
I started this week, having gone 6 months without meds and using oxygen. Have been on a weekly cycle- neorologist hesitates to call 3 h/as per week chronic. So far the prednisone has worked=
hopefully this will have the effect of knocking me out of the cycle.
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LasVegas
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Episodic CH since 11 yrs old, now 39.
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #14 on: Aug 14th, 2005, 6:12pm » |
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Well, here's a n update....it's Sunday. Started 60mg Pred and 240 mg Verap last Sat. Sun, Mon, Tues, Wed, Thurs followed this routine. The meds immediately worked and as of last Sat when I started, had only CH on Wed midafternoon, used Trex shot and gone within 2 minutes. On Friday night I had a few drinks with this girl, stayed up all night with her and needless to say forgot my meds. Yesterday-Sat had a CH at 5am, again around 11am and once again around 7pm. Used Trex shots on all 3 attacks and was fearful as for the 18mg total I injected, but didn;t care as I realize these CH's are going to kill me 1 way or the other, sooner or later, i'm natually an optimist, but this is a reality situation which I just can't handle. Last night-Sat-continued with my 60mg of Pred and upped the Verap for the 1st time all eek from 240mg to 480mg. It is Sunday, I did have 1 CH this morning, used a Trex shot and gone hopefully forever. I will need to taper the Pred as I have very few left, but very scared to do so. So I figured if I have a good amount of the Verap, just keep this new dosage at 480mg and pray. I have no doctor, got these meds "underground", have since lost my "underground connection" as it was a 1 time favor from somebody out of state as mentiuoned above in previous posts. o2 is not easy to get without a script around Las Vegas, have called around several places acting as if I am doing some home improvement welding, but still no luck. I do have a rebreather mask if I could get some. As for the Verap....curious if it has been in my sytem for a week at 240mg, how long before the 480mg should take effect? Also tried slamming a RedBull with 3 or 4 Excedrin Migraines and did nothing for me except inspire me to narly OD with Trex. I had to go to 2 different pharmacies today for insulin syringe/needles as the 1st pharm wouldn't sell them to me, the other pharm knew me from 2 yrs ago with the CH's and sold me a dozen. Ony have 18mg (3 dose Trex shots left) so was thinking of trying to split them with a insulin needle in the shoulder where I give myself the Trex shot...any opinion of 3mg vs 2mg? Would appreciate some feedback from those experienced with Verap, Pred and insulin needle shots with Trex...thanks in advance....Gregg in Las Vegas
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jcmquix
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Re: PLEASE HELP TWO YRS & IT's BACK
« Reply #15 on: Aug 15th, 2005, 5:04am » |
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Las Vegas..
Hi... Nice to meet... you sorry its under these conditions...
I do not have much experience with Verap or Pred..
But as far as deviding up the TREX inj... I divide each one into 3 syringes, about 2mg each.. You may have to expermint... I started at 2mg and it kicked a HA for me, but I have had 2 times where the HA was strong enough to have to take 2 - 2mg shots. But since I have started to divide the shots, I have not went over the 12mg in 24hours.. I have also managed to make my TREX last longer...
If you do not have Health Insurance.. try going to the Local Health Clinic.. it got me thorugh once, when I was out of work.. got all my meds almost for free, they base the price on your income... plus got lots of free samples of meds...
Until I got a script, I got my syringes from a Pet Feed Supply store, just told them I had a diebetic Cat...
If you start getting the night time hits you may try the Melatonin, I was always getting my hardest hits at 1am & 3am... I am still in cycle, so I use 9mg Melatonin & 50mg Benadryl about 30 minutes before bed, this helps me get through the night 95% of the time..
Just post if you have any questions, someone will usually answer in a few hours..
Good Luck & PFDAN's to You !!!
Charlie
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