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Topic: Here is what is working for me... (Read 674 times) |
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Derrick
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Here is what is working for me...
« on: Jul 23rd, 2006, 11:07pm » |
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Hello, for any who are interested, here is what is working for me right now, alot of ya probably know this already, so this is for the new folks:
Prophylactic:
Verapamil- 110mg/ day, scheduled to double starting on Wednesday- (July 27th).
Prednisone Taper- 7 10mg tabs for 1st two days, 6 for the next 2 days, tapering down every two days. All taken at once 1 time/ day.
Co q 10 Suppliment- 400mg/ day taken around 1pm with everything else (200mg), then again around 8pm.
Magnesium Suppliment- 400mg/ day taken 1pm like everything else.
Melatonin- 6-9mg before bedtime.
Abortive:
100% aviators breathing Oxygen- when at work, w/ mask in emergency mode (mask has selectable emergency, 100%, and normal modes). Emergency mode provides constant flow rather than suction only and is under pressure. Usually takes about 5-10 minutes to abort.
Imitrex Injections- To make it last longer, I use disposable subcutaneous syringes along w/ HALF of a 6mg vial of Imitrex. This effectively doubles my supply and works like a charm everytime.
Red Bull- Doesn't work for me.
Have't been hit in 5 days now, no shadows either. Woohooo!
Note: The above prohylactic measures should be taken at the same time everyday or as close as possible, so as to keep a constant amount of medication moving through your body every day.
Feel free to hit me any questions....
-Derrick
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I'm breathing, so I guess I'm still alive- Even if signs seem to tell me otherwise- I've got my hands bound, and my head down and my eyes closed, my throats wide open.........
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Derrick
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Re: Here is what is working for me...
« Reply #1 on: Jul 23rd, 2006, 11:31pm » |
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Also, My Dr. (who has been a gift from god himself!) wrote me a 'scrip for Torodol, but as of yet, I haven't filled it....So I don't know if this is a helpful drug or not. Will let you know if I do however.
-Derrick
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I'm breathing, so I guess I'm still alive- Even if signs seem to tell me otherwise- I've got my hands bound, and my head down and my eyes closed, my throats wide open.........
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nani
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Re: Here is what is working for me...
« Reply #2 on: Jul 24th, 2006, 1:54am » |
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Hi Derrick. I'm glad the pred is giving you a break. Most of us have to use 360 mg or more of verapamil in order for it to work well. At 240 mgs, your attacks may come back after the pred taper. The toradol may take too long to be an effective abortive. When you use oxygen, are you using 10 - 15 lpms with a non-rebreather mask?You may want to have a look at the clustermasx, everyone who tries it reports improved results. Look here: www.clustermasx.com
I hope that this break lasts through your cycle. 
pain free wishes, nani
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Others may come and go, but MY power is MINE.
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Richr8
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Re: Here is what is working for me...
« Reply #3 on: Jul 24th, 2006, 4:59pm » |
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Your regimen is very similar to mine, however, I am extremely concerned about the effects of prednisone. For that reason, I am looking at an alternative approach for my next cycle.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
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Re: Here is what is working for me...
« Reply #4 on: Jul 24th, 2006, 5:31pm » |
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I do agree with Rich that pred is a pig of a drug no matter what you gain on the swings you will lose something on the roundabouts but as long as you weigh up the benefits and consequences for YOU that's all that matters. Please do look at how it can affect you though if you don't know, that's all I'll say there!
You should have an ECG at every increase of dose with verapamil as it is a Blood Pressure drug - Nani's advice there is spot on though in that you may need to increase it further.
Good luck! Let us know how you're getting on okay?
Helen
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Derrick
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Re: Here is what is working for me...
« Reply #5 on: Jul 24th, 2006, 7:25pm » |
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Thanks for all of your thoughts and inputs!. Day 6 today and feeling GREAT! Where is Starlight, is she doing Ok?? Also, I have been off work since last wednesday and dont return until this wednesday (hey, that is the schedule I was assigned!- no complaints!) I think that may have been the best help of all!!!!. Wed. I start a 1 day trip, then a four day after that, so we'll see..........
-Derrick
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I'm breathing, so I guess I'm still alive- Even if signs seem to tell me otherwise- I've got my hands bound, and my head down and my eyes closed, my throats wide open.........
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mr.c
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Re: Here is what is working for me...
« Reply #6 on: Jul 25th, 2006, 1:47am » |
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I was given torodol 10 years ago...
My mistake was trying to use it as a prophylactic...
I would anticipate my headaches and then take it...
I ended up with major stomache problems... 
However, I once was given a shot of torodol in the ER. That seemed to work (or my HA stopped on it's own). 
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I can blame the headbanging for the baldspot...?
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CHTom
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Re: Here is what is working for me...
« Reply #7 on: Jul 25th, 2006, 12:29pm » |
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Since the voltage on my DBS device was increased to 5 volts in April, I have not had a significant CH attack-usually the pain is in the AM after waking up and it tops out at 4 or 5. I can now drive, read, write, go out in the sun and do all of the things that "normal" peope do. Aside from the occasional Dilaudid (down to 1 or 2 a day vs. 8-10) and Actiq (1 or 2 a day instead of 6), I no longer need meds every day, all day and can't remember the last time that I had an attack stronger than 5 and those come only one or two times a day, though there are times when I have no pain for several days. Check out the latest info about the DBS operation on the web-I think that it is time to stop messing around with home remedies and potions and enter the modern age of medicine.
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LeLimey
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Re: Here is what is working for me...
« Reply #8 on: Jul 25th, 2006, 12:55pm » |
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4 doses of narcotics a day doesn't inspire me with much confidence.
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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seasonalboomer
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Re: Here is what is working for me...
« Reply #9 on: Jul 25th, 2006, 1:10pm » |
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on Jul 25th, 2006, 12:29pm, CHTom wrote:| I think that it is time to stop messing around with home remedies and potions and enter the modern age of medicine. |
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I appreciate your comments sometimes Tom but you do realize there are those here that have varying levels of severity to our CH problem. Your solution may not apply to everyone, many of whom are under the belief that we are using modern medicine in the way we address our CH.
Based on what you've described you may feel as though your results merit such strong opinions. Your present symptoms don't really inspire me though. Again, it may be a great improvement for you but what you describe doesn't seem to be any different in its results than what many others describe from the "home remedies and potions" that we all are apparently dabbling in.
Scott
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seasonal boomer
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