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Topic: Thank You (Read 385 times) |
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Bobby_Easland
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My cluster headaches started some 5 or 6 years ago and my physician at the time was a sufferer as well. He knew exactly what to do...Prednisone taper. It has worked well since then for my seasonal detox periods [I can't touch a drop of alcohol for the duration of the cycle so it's become known to me and my wife as the alcohol detox period  ].
This cycle is different than the past ones. The Prednisone is only moderately effective. I tried to ramp the dose up to a full 100 mg for the past 3 days taken at 11 PM and still the cluster headache demon visits me at 1:30 AM. Of course, the high dose of Prednisone was a test and will not be continued as I don't want to damage my liver with the 17-alkylated steroids. However, it proves to me that even 100 mg are not breaking the cluster.
With this revelation I became panicked. Prednisone has worked so long for me that I've almost forgotten what a full blown attack feels like. Occassionally one will still pop through the Prednisone and the hot fireplace poker in eye is remembered but not the full blown effects (right eye watering, right nostril running like the Mississippi river, etc.). I desperately began searching the internet for good medical info to take to my current physician for alternate treatments. After the onslaught of penis enlargement sites and others I found this website. I am absolutely floored!
All these years the only person I've ever encountered that can comprehend the curse is my original physician. He has since retired and can't be located...and NOBODY has understood the pain. The first couple of years my wife would get up with me in the night and bang my head with my favorite cluster headache frozen beer mug but now it's just me, frozen mug, and one hell of a pissed off cluster alone in the dark in debilitating pain at 1:30 in the morning.
For the first time I feel like there are others out there like me. I'm not alone! Thank you to whoever is responsible for maintaining this website...for the first time I've found others with my curse and a wealth of information.
Bobby
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nani
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Re: Thank You
« Reply #1 on: May 14th, 2005, 8:52pm » |
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I don't know much about Prednisone, except that it's usually tapered while preventatives kick in. Are you using any prevents? Or abortives? Now that you're here (and I'm sorry you have to be) read, read, read.
Pay special attention to the oxygen info link on the left and look at the Medications board to see what others are using successfully. Keep posting and let us know how things are going. Hang in there and pain free wishes, nani
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Others may come and go, but MY power is MINE.
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Bobby_Easland
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Re: Thank You
« Reply #2 on: May 14th, 2005, 9:57pm » |
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Nani,
I have no idea what preventatives or aborts are...I've been using Prednisone for over 5 years now. I'm sure you know that I'm deadly serious when I say that once you find something that works for cluster headaches you don't start experimenting with other things. Hence, I have not researched for alternatives until now. I am so thankful that I've found this website as I'm following your advise and reading everything available.
I am 100% positive that by morning I'll be able to come back to this thread and tell you what a preventative or abortive treatment is
Bobby
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E-Double
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Re: Thank You
« Reply #3 on: May 14th, 2005, 11:29pm » |
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Welcome aboard brother!!
This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
Ask for a script and if needed FIGHT fOR Oxygen...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Educate your doctors!!!
Good luck amd stay strong!
E
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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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Bobby_Easland
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Re: Thank You
« Reply #4 on: May 15th, 2005, 9:12am » |
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I have the laser printer burning ink like it's free and I'm also saving each resource (PDF's and HTML pages) onto a CD. I have an appointment with my primary care physician tomorrow and I will hand the entire folder with disk to her. This website is the greatest information resource on the internet!
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nani
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Re: Thank You
« Reply #5 on: May 15th, 2005, 9:28am » |
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Good for you, Bobby! Be prepared to ask for the meds you think you'd like to try, she won't have time to read all the info right away. You are your own best advocate. Keep us posted.
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Others may come and go, but MY power is MINE.
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E-Double
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Re: Thank You
« Reply #6 on: May 15th, 2005, 9:44am » |
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There ya go!!! Great Strtegy and NEVER be afraid to speak up!!!!!
Good luck and hang in there.
E
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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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pattik
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Re: Thank You
« Reply #7 on: May 15th, 2005, 9:50am » |
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Welcome to Clusterville,and as Nani said, be sure to check out the oxygen info on this site. Many of us here have had great results with it. Good luck, and keep in touch. Pat
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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Bobby_Easland
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I love YaBB 1G - SP1!
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Re: Thank You
« Reply #8 on: May 15th, 2005, 10:31am » |
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on May 15th, 2005, 9:28am, nani wrote:| Good for you, Bobby! Be prepared to ask for the meds you think you'd like to try, she won't have time to read all the info right away. You are your own best advocate. Keep us posted. |
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First, thank you to everyone for the warm welcome. It looks like most of you are old timers around here so may not remember what it's like to feel like a freak with a disorder that nobody comprehends or can identify with. Just knowing there are over 8,000+ people here that suffer from the same demon makes me feel like I'm not alone anymore. I've been with my wife for nearly 15 years and although she's been there with me every attack of every cycle she will never truly know. 5 years ago when I started hitting the back of my head with a frozen beer mug she didn't know how to respond. I can say the same thing here and the members know...and comprehend...and may even do the same.
OK...to recap: I've been on Prednisone for my cycles since the beginning. It has been supremely effective in completely eliminating the attacks with a 60 mg taper over 6 weeks. This cycle is different and Prednisone is completely ineffective...so I'm scrambling to research alternates. Thus far I've found this cocktail that I'd like to try:
Preventive
- Dexamethasone - 10 mg taper over 4 weeks
- Melatonin - 9 mg before bed
- Ergotamine, LSA, or psyilocibin [since the last time I tripped was about 14 years ago , just joking]
Abortive
- Oxygen - 8 LPM, non-rebreather
- Imitrex - Injects, no pills
In the meantime, I'm heading to the local Wal-mart or GNC to pick up some Kudzu. I'm not taking any chances...this morning's attack was brutal (Kip 10, thoughts of a 16 penny nail through the side of my temple were being entertained). Also, I have a buddy that is a welder and is going to loan me one of his big arse O2 tanks. I know it is not medical grade but it's the best I can do until I get a script. Plus, it's way cheaper. Hopefully, the O2 tank, Kudzu, and a few grams of Tylenol will get me through the night.
Once again, thank you to the community...
Bobby
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E-Double
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Re: Thank You
« Reply #9 on: May 15th, 2005, 10:51am » |
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DO NOT MIX ERGOTS AND TRIPTANS!!!!!!
That being said....Hi again!
I don't think anyone here New or Old has Forgotten at all what it is like to be a "freak" as you put it.
I've dealt with this undiagnosed for 9 yrs and finally when things went heywire got diagnosed last June....
Always episodic and in fear until I found this place and learned to LIVE!!!
My cycle that started last march with all the beginning signs that I never paid attention to until full blown never ended and is now over a yr. old.......
It doesn't matter!!!!
What matters is that you learn to deal the best you can.
No one has forgotten.We have just learned to prepare and to arm ourselves with weapons of literature and medication..some man made and some alternative...
You will find what works for you BUT do educate yourself because many of these meds have dangerous interactions that can not only be slightly harmful but POTENTIALLY LETHAL!
I remember everyday what it's like  so do many of us since we have daily reminders......The trick is to try to enjoy every other minute!!!
Hang in there my friend and TRY to stay positive!!
Always here if ya need to talk!
Eric
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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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nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
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Re: Thank You
« Reply #10 on: May 15th, 2005, 10:53am » |
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You may want to go 10 - 15 lpm on the oxygen, hun. Don't use it for more than 10 - 20 minutes at a time. If it's going to help, it will have worked by then. Use it at the first sign of a hit.
You can add melatonin to the kudzu and oxygen. Kudzu is still being tested, so we aren't sure of all the potential drug interactions. If you could stick to just kudzu. oxygen and melatonin for awhile, it would be safest. You're doing a great job informing yourself.
~nani
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Others may come and go, but MY power is MINE.
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miapet
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what doesn't kill me makes me stronger
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Re: Thank You
« Reply #11 on: May 16th, 2005, 8:44am » |
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We would encourage you to try the o2 first . . it's the least invasive . . read about the triptans, as there is a school of thought that believes they cause rebound h/as and once that merry-go-round gets going it's very difficult to get off . . .ergots can be helpful, just watch your digits and circulatory system . . .kudzu appears to be doing great for some people, and LSA is showing great results too . . .and of course, the psilocybin data is out there.
sorry you are getting whacked . . .
*positive light and energy*
miapet
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Jonny
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Re: Thank You
« Reply #12 on: May 16th, 2005, 8:08pm » |
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on May 15th, 2005, 10:31am, Bobby_Easland wrote:| Also, I have a buddy that is a welder and is going to loan me one of his big arse O2 tanks. I know it is not medical grade but it's the best I can do until I get a script. |
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Welding 02 is 100% pure, just like medical 02. welding and medical tanks are filled from the same main 02 tank at the gas house.....a brazing or cutting torch will not work unless the 02 is 100% pure.
I own a welding shop and have my gas guy convert regulators for folks here that cant get a script for 02.....if you need one let me know
............................................jonny
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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