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Cluster Headache Help and Support >> Getting to Know Ya >> first time here http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1267197481 Message started by Chad from mn on Feb 26th, 2010 at 10:18am |
Title: first time here Post by Chad from mn on Feb 26th, 2010 at 10:18am
Hi everyone
Been getting these for about ten yrs and i just hit my phase again.What a damn nightmare.Do the energy drinks really work?And what is the best preventative? My doc has me on Presnidone.I hate it |
Title: Re: first time here Post by Chad on Feb 26th, 2010 at 11:21am
Greetings Chad, BTW nice name :)
Ok, here's the scoop and you'll get feedback from many others here with what they use for abortives and preventatives. Most popular abortives on this site: -#1 would be oxygen using a non-rebreather mask at a high flow rate (15 LPM or higher) -Imitrex injections and you can use the tip on the left to save. -Energy drinks with 1000 mg Taurine Popular preventatives: -Verapamil -Topamax -Lithium Natural preventatives: -Kudzu -KiloWatts concoction which can be found on this site -rivea corymbosa, morny glory or HBWR seeds -Melatonin (OTC) for a good nights rest There are many more in each category. The pred. is popular when folks ramp up on a preventatives like Verapamil. It keeps the hits away while the prevent takes full effect. It worked for me, but only the days I was on it. As soon as the taper was over, I got slammed for round 2. Do you go to a neurologists? You need to find a good HA doctor or pain management specialist. You'll need an MRI to rule out the worst. Remember, clusters suck like hell, but they won't kill you and never think of the next hit because it will eat you up. Enjoy those pain-free moments especially remission. Feel free to ask anything. Welcome to the family! Peace out, the other Chad |
Title: Re: first time here Post by Guiseppi on Feb 26th, 2010 at 11:32am
The best prevent, sadly, it varies a great deal from person to person. Prednisone provides 100% relief for me at doses as low as 30 mg a day. The down side is long term use of pred can really screw up your joints and internal organs. For CH patients, prednisone is typically used as a transitional medication. Most of our prevents take a week or two to become effective so we use a prednisone taper to get us through until our prevents kick in.
For a small percentage of CH patients, a pred burst will actualy stop a cycle completely. Sadly I'm not one of those lucky ones! Verapamil is generally the first round prevent people try. We use it at doses higher then doctors are used to, some as high as 960 mg a day before they get relief. It can drop your blood pressure a lot so it requires close monitoring at first to establish an effective dosing that's safe for you. I use lithium, at 1200 mg a day it blocks about 70% of my attacks, as long as I'm real careful about avoiding triggers. For me that's alcohol, sustained stress and screwing up my sleep cycles. Lithium requires a bit of blood work at first to establish an efective level. And forget the Hollywood portrayal of mouth breathing morons on lithium, we use it at doses far lower than that. Nothing a cup of coffee can't overcome. Topomax is also a popular prevent, many here on the board swear by it. Energy drinks work great for some, not at all for others. I use them in concert with oxygen. For me, oxygen will halt an attack in its tracks in less then 10 minutes, but they tend to come right back within 20 minutes. Now I chug an energy drink when an attack is starting, and get on the 02. 02 knocks it down, energy drink seems to keep it from returning. Take a minute and read the "oxygen info" link on the left. Feel free to print out the info and take it to your doc. Oxygen has all but eliminated my use of imitrex. It must be used correctly or it's useless. The key is getting 100% oxygen to the lungs. No outside air, no exhaled air. This can be accomplished using a Non Re Breather Mask, and a high flow regulator, at least 15 LPM, preferably one that goes to 25. Glad you found the board, you will not find a more comprehensive collection of CH "first hand" knowledge anywhere! Joe |
Title: Re: first time here Post by bejeeber on Feb 26th, 2010 at 11:34am
Hey Chad,
Stick around and you'll find some good answers to those questions. That's my officiall prediction of the day. :) So you're on a prednisone taper? I'm not a fan of the pred myself, but that is especially because I was on a sustained high dose for CH once, which is a one way ticket to some potentially lifelong serious side effects. Some others who do pred tapers here have results they are happy with. This stoopid CH beast is very dodgy, especially in the preventative dept., and there's no one preventative prescription drug that works for everyone. Higher doses of Verapamil are popular with some here (I haven't tried the high dose, can't comment). In reality, the preventative that seems most promising to me as far as effectiveness vs. side effects is sub hallucinogenic doses of what could otherwise be hallucinogenic medicinal plants such as psilocybin. This is just going on reports from others who have gone there. Prominent medical researchers are launching clinical trials in this realm at harvard and in Europe. I haven't been able to try it myself. Not always easy for some of us to snap the fingers and have some (illegal) psilocybin at our disposal right when an episode hits. There are also RC seeds, a milder, legal to mail order botanical in the same category that some report results with. These topics can be searched here and at clusterbusters.com. So what ya doin' for abortive? You'll quickly notice how popular the newer method of O2 use a la the Oxygen info link on the left is in these here parts, if you haven't already. 8-) |
Title: Re: first time here Post by Chad from mn on Feb 26th, 2010 at 12:05pm
What exactly is a non re breather mask?
i just got oxygen and what i have is a device that i place in my nostrils and thats it.Do i need something different? |
Title: Re: first time here Post by vietvet2tours on Feb 26th, 2010 at 12:36pm |
Title: Re: first time here Post by Chad on Feb 26th, 2010 at 12:50pm Chad from mn wrote on Feb 26th, 2010 at 12:05pm:
Also, make sure that regulator goes to 15 LPM. A lot on here use 25 LPM and higher. They may have only supplied you with one that is 0-8 LPM. The more the better. |
Title: Re: first time here Post by Chad from mn on Feb 26th, 2010 at 1:47pm
Thanks guys for the info.
Just got 18 more imitrex injections too |
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