For the thread I started in the therapies forum.  I definitely got off on the wrong foot with you guys.  I've completely quit taking illegal drugs, but I won't stop taking my oxycodone when I'm up there at a kip 9 or 10, I just no longer mainline it. Please, I need all of you.  I swear that I really am a great guy, and not any sort of druggie at all.  Before I found this website I was totally alone.  No one I've ever met even knows what they are.. even doctors at hospitals are perplexed *sigh* c'est la vie right? 

But I want to do work to raise awareness of this disease, as well as to raise money towards helping to find a cure, but that wont be started for a while yet.

Really, I posted the original with the kindest of intentions... and yes, I was angry when everybody treated me like the first neurosurgeon I went to.

How about this, can I ask you guys if there are any more very powerful vaso-constrictors out there?  Maybe something like that would help.  From what I read, vaso-dilation does seem to be the problem.

Maybe we should move this part to another threat, but I doubt i'll be looked upon kindly for a while now. 

Wiki says this, "Medications that cause vasoconstriction include antihistamines, decongestants and stimulants used to treat ADHD."

Has anyone tried any of these?  I think I might go out and buy some Sudafed... make myself a human test dummy.

And hey, finally, everyone makes mistakes... but I've corrected the worse one I ever made in my life... and I no longer agree with every single thing I made in the post.

So, start over?  Or would you be more comfortable if I just left?

Well for my part, apology accepted.  :)

We can start over and hopefully, we can help you find some alternate options.

I don't remember if you posted about other meds in your previous post but do you want to tell us what you have tried, triptans, verapamil and so on and how they worked and lets see if we can't help!

helen

BTW - where are you? What state I mean not your street address?!

First, get set up on oxygen. You need a non-rebreather mask like the O₂ptimask sold here in the ch.com store. You should breathe nothing but 100% oxygen at a rate of 15 liters per minute or higher (some say 25 liters per minute minimum). It's all the vasoconstricting you will need - it's the way your circulatory system reacts when it has more O₂ than it needs, and it works damn well when done properly.

Second, stop wearing your heart on your sleeve. That's juvenile behavior. If you're doing things that are detrimental to your health, people around here don't hesitate to tell you, and you should be able to take the criticism like a man.

Welcome to the board, you are no longer alone.. :)




Lefty..!

Many people have had luck with using energy drinks (i.e. Redbull, etc.) as an abortive due to the high caffeine & taurine content.  Caffeine acts as a vasoconstrictor as well.  Read as much as you can on the meds forum of this board.  Although no one thing helps everyone, many different things help many different people. 

I know you're hurting and that patience is in short supply, but you can and will get through this.

Stick around, you'll be better off for it.

Live and learn.

All the best, Iddy

2 things Brew said stand out. Get oxygen....and make sure it's the correct set up. I've lost count of the number of people who stated oxygen didn't work, or just barely worked for them. They changed HOW they used it and it became a miracle abortive for them. Please research the oxygen info link on the left and give it another shot.

As to the 2nd part, the internet is a wide open, fast paced, sometimes cruel place. If you throw an opinion out there, the chances 100% of the people will agree with you are pretty slim. The only rule we have a problem with around here is personal attacks. We do not tolerate those. We lock and even hide those in the wink of an eye.

So welcome back. Get busy researching the info around here and help us help you.

Joe

It takes a big man to apologize, Zep. Congratulations.
That said, there are many here who have suffered as you do, but they have found far less extreme measures in order to live a normal life with the Beast.
Conversely, every now and then, someone pops up with a story like yours, but the ending isn't so great.
Here's a fact:
CH WILL NOT KILL YOU!
It's likely to make you FEEL like dying, but the hit will end. The effects of OXYCONTIN, or OXYCODONE will stay with you, like a monkey on your back, growing stronger and more voracious by the day. Is it worth it? NO! It WILL KILL YOU!
There are so many safe ways of dealing with CH-02 being at the top of the list here. PLEASE read, read more, then read even more. Ask questions, but you'll get along just fine here when talk of illicit drugs and mainlining are removed from your vocabulary.
You will find all the 'warm fuzzies" you can handle, once you are open to the really viable options in front of you!
Meantime, I am wishing you PF(pain free)DN( days and nights).
The lights always on.
Cathi

that was sincere...apology accepted.

For what it's worth, I accept your apology too and lets start over.

You will never meet a more caring and supportive group of people than right here.  People who understand exactly what you're going through.  People who will lift you up or give a swift kick in the pants if that's what is warranted.

Please do tell us what you've tried in the past as far as preventatives or abortives.  Imitrex nasel spray or injections are the best vasoconstrictors we have going for us right now.   Pure oxygen is a life-saver for so many of us.  Check out the link to the left of here.

      Welcome to your new home and to this family. 

Linda

Good on ya....welcome aboard....

When O2 doesn't work...Zomig nasal spray is MY miracle abort...you might want to ask the Doc for samples...it's frightfully expensive...

Best,

Jon

Quote:

From what I read, vaso-dilation does seem to be the problem.

I may be the only one here that thinks of vaso-constriction as the problem, not an answer. The little technique I post now and then should explain my thinking:

Dr. Wright’s Circulatory Technique

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. This technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. As silly as it sounds, try to think of it as filling your hand with redirected blood flow. The important part is that it has to be done without interruption until it has some effect. Do not give up in frustration. It may not work on the first try. Sometimes it can work quicky but it almost always worked after a time. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of this method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

In any case, welcome aboard and let us know how things are going for you.

Charlie

I for one would be very unhappy if you left.  You are not the first one to come here and plant a foot firmly in his mouth with a first post.  Your apology is accepted gladly and a welcome is extended as gladly.

Please understand where we come from when we get a post like that.  Many of us have been accused of being drug seekers when we go to the ER for help.  Drugs are the LAST things we want!  We know narcs and opiates don't work for CH, and want nothing to do with them for the most part. 

A number of us were prescribed narcs and opiates early on in our dealing with CH and some of us have been either addicted (see Svenn's great post "Dancing with the Devil" at the top of each menu page) or have been at least dependent on them.  I was on a couple early on that it took a long time for me to wean myself off of.  At times I still have the urge to "just try one", and it has been nearly 30 years.  We don't want to see someone else get hooked on something that will not do any good.  BTW, Oxycontin and Oxycodone are two of the most addictive drugs out there.  We have a member here who was addicted to them for a number of years.  I'll not mention his name without his consent, but I know the old-timers here will remember how irrational some of his posts were while on the stuff.

There are a number of different avenues for you to pursue without having to go the illegal route, but if you want to go alternative there are options available that are non-addictive, but EFFECTIVE, which narcs are not.

Please read, read, and read some more.  Ask questions!  You have found a family that really will care for you given the chance, and more so, will happily answer whatever you need to know.

One last thing.  O2!  See the yellow button to the left on oxygen info.  Read it, understand it, get it.  The only thing I would change there is to go with at least 25lpm.  It works for me within 5-8 mins.

Jerry

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This ain't your first rodeo cowboy.

          Potter

Good work Detective Potter
Next time we're up in MT, Moose Drool on the house:)

Charlie wrote on Feb 9^th, 2010 at 9:38pm:

I may be the only one here that thinks of vaso-constriction as the problem, not an answer.

No, you aren't the only one. When my clusters started, I was using lots of pseudofed for allergies. It makes it easier to breathe, but it also messes with the hypothalamus (especially the body's thermostat). And the possibilities of 'rebound' from the ups and down of vasoconstrictors just adds to the potential for more hits, in my opinion.

Caffeine and nicotine are double-edged swords, I believe. In the short term, when getting hit, they do provide some comfort from the vasoconstriction. But long term, high use of these is associated with more migraine (no real studies on clusters, but migraine is a related form of neurovascular headache, and there is a good possibility that this holds true for CH as well).

LasVegas wrote on Feb 10^th, 2010 at 2:49am:

Good work Detective Potter Next time we're up in MT, Moose Drool on the house:)

    I can only drink one beer or I can drink all the beer they brew. So I quit fifteen years ago.  I'm a beer junkie so I don't drink the stuff.
     I can drink Kentucky bourbon though.

                  Potter

Potter wrote on Feb 10^th, 2010 at 1:49pm:

LasVegas wrote on Feb 10th, 2010 at 2:49am: Good work Detective Potter Next time we're up in MT, Moose Drool on the house:)     I can only drink one beer or I can drink all the beer they brew. So I quit fifteen years ago.  I'm a beer junkie so I don't drink the stuff.      I can drink Kentucky bourbon though.                   Potter

Was in Missoula this past July and acquired many Moose Drools and was not able to just have 1  [smiley=beer.gif] [smiley=beer.gif] [smiley=beer.gif]

Regardless, I admire your detective work...Kentucky bourbon it shall be   :D

this has been most entertaining thread/threads of the year so far....  lots of plot turns...

thanks potter

daxm wrote on Feb 10^th, 2010 at 3:51pm:

this has been most entertaining thread/threads of the year

And it's only Feb. 10.

Brew wrote on Feb 10^th, 2010 at 3:52pm:

daxm wrote on Feb 10th, 2010 at 3:51pm: this has been most entertaining thread/threads of the year And it's only Feb. 10.

Hey what the heck, if we don't have a current rumor lets start one. ;)
Cheers
Barry

I read the original thread and I don't think he mentioned the one illegal drug that has helped many here.

Either bad research is to blame or the inability to see past one solution.

Paul

Quote:

I don't think he mentioned the one illegal drug that has helped many here.

I mentioned it there Paul.  Hope he saw it.   :-?

PbZep wrote on Feb 9^th, 2010 at 1:52pm:

How about this, can I ask you guys if there are any more very powerful vaso-constrictors out there?  Maybe something like that would help.  From what I read, vaso-dilation does seem to be the problem. Wiki says this, "Medications that cause vasoconstriction include antihistamines, decongestants and stimulants used to treat ADHD." Has anyone tried any of these?  I think I might go out and buy some Sudafed... make myself a human test dummy. And hey, finally, everyone makes mistakes... So, start over?  Or would you be more comfortable if I just left?

No need to go runnin' for the hills unless you aren't genuine, and you are the only one that can answer that, and time in this forum will always reveal that truth.  So, with that out of the way, let's get to the business of what this forum is here for.  Please also try to understand, and always keep in mind that communication is 93% non-verbal, and that is removed when communicating via this medium - you must be able to concisely state what you mean in a way that is respectful and non confrontational, that's just good netiquette

I will be side stepping the myriad comments that do not directly address your questions/concerns, or do not give solid recommendations based on factual information for treatment options.

First and foremost, we are not doctors.  We can only give you information on our own personal experiences and they will be colored by our own perceptions of the world.

As for Sudafed, I would recommend against it because of personal experience with how things went after prolonged use.  Long story, best told another time in another thread and probably another lifetime ;)

Wiki is not what I would call the most reliable source, however, there is some merit to what you posted.  I am currently under the care of a highly respected, well known, extremely knowledgeable headache specialist who has worked with the world's best.  One of the SHORT TERM treatment options he uses for certain patients is dextroamphetamine - a drug that was quite often used in treating ADD/ADHD before the age of Ritalin etc.  Again, this IS A SHORT TERM option; meant to get past the initial brick walls often found with refractory intractable CHers.  It has had a PROFOUND effect;

The mode of action is this:  dextroamphetamine affects the brain chemicals seratonin, epinephrine, norepinephrine, and dopamine.  Essentially you flood the receptors (it's a very small dose - smaller than you would take for ADHD) and that puts the brain into action;  the brain being the wondrous and enigmatic lump of gray matter that it is, falls under this cool mandatory regulatory system.  Whenever a particular level is over stimulated, it must regulate itself.  The dextro forces a stimulation, in turn forcing a regulation, creating a more normalized level of chemicals in the brain.  That is a very very simplistic way of putting it.  It gets into the CGRP receptors and all sorts of other 5HTP agonists and antagonists as well, but for purposes of your question, yes, these medications MAY have some value in SOME patients under CAREFUL supervision and control.

The key thing I would suggest to you is that no two patients have the same chemical mix occurring and therefore no two treatment regimens will work the same way.  In all of the various treatments and techniques we try, the one that seems to have the best across the board results (legally) is Oxygen, and that should most definitely be in your arsenal.

Aside from addressing those points, (and I can assure you that I personally am not interested in attacking or judging or condemning you) what other medications/treatments have you tried?  It would be beneficial to know the specifics of the various techniques and treatments you've tried, and how long you've suffered, and what your headache patterns are like so that a more complete and informed picture of your personal situation can be evaluated, with the end result, hopefully, being that we are able to guide/advise/educate you to other treatments you may not be aware of, and to help you find a) successful treatment options; b) a knowledgeable headache specialist (not just a neurologist) and c) support and resources to help you through so you can learn to live life to the fullest despite the beast.

Wishing you the best, and hopefully you'll consider my offer and provide some further info so we can better assist you :)

Cat

This might assist you:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

catlind wrote on Feb 11^th, 2010 at 2:01am:

No need to go runnin' for the hills unless you aren't genuine, and you are the only one that can answer that, and time in this forum will always reveal that truth.  So, with that out of the way, let's get to the business of what this forum is here for.  Please also try to understand, and always keep in mind that communication is 93% non-verbal, and that is removed when communicating via this medium - you must be able to concisely state what you mean in a way that is respectful and non confrontational, that's just good netiquette I will be side stepping the myriad comments that do not directly address your questions/concerns, or do not give solid recommendations based on factual information for treatment options. First and foremost, we are not doctors.  We can only give you information on our own personal experiences and they will be colored by our own perceptions of the world. As for Sudafed, I would recommend against it because of personal experience with how things went after prolonged use.  Long story, best told another time in another thread and probably another lifetime ;) Wiki is not what I would call the most reliable source, however, there is some merit to what you posted.  I am currently under the care of a highly respected, well known, extremely knowledgeable headache specialist who has worked with the world's best.  One of the SHORT TERM treatment options he uses for certain patients is dextroamphetamine - a drug that was quite often used in treating ADD/ADHD before the age of Ritalin etc.  Again, this IS A SHORT TERM option; meant to get past the initial brick walls often found with refractory intractable CHers.  It has had a PROFOUND effect; The mode of action is this:  dextroamphetamine affects the brain chemicals seratonin, epinephrine, norepinephrine, and dopamine.  Essentially you flood the receptors (it's a very small dose - smaller than you would take for ADHD) and that puts the brain into action;  the brain being the wondrous and enigmatic lump of gray matter that it is, falls under this cool mandatory regulatory system.  Whenever a particular level is over stimulated, it must regulate itself.  The dextro forces a stimulation, in turn forcing a regulation, creating a more normalized level of chemicals in the brain.  That is a very very simplistic way of putting it.  It gets into the CGRP receptors and all sorts of other 5HTP agonists and antagonists as well, but for purposes of your question, yes, these medications MAY have some value in SOME patients under CAREFUL supervision and control. The key thing I would suggest to you is that no two patients have the same chemical mix occurring and therefore no two treatment regimens will work the same way.  In all of the various treatments and techniques we try, the one that seems to have the best across the board results (legally) is Oxygen, and that should most definitely be in your arsenal. Aside from addressing those points, (and I can assure you that I personally am not interested in attacking or judging or condemning you) what other medications/treatments have you tried?  It would be beneficial to know the specifics of the various techniques and treatments you've tried, and how long you've suffered, and what your headache patterns are like so that a more complete and informed picture of your personal situation can be evaluated, with the end result, hopefully, being that we are able to guide/advise/educate you to other treatments you may not be aware of, and to help you find a) successful treatment options; b) a knowledgeable headache specialist (not just a neurologist) and c) support and resources to help you through so you can learn to live life to the fullest despite the beast. Wishing you the best, and hopefully you'll consider my offer and provide some further info so we can better assist you :) Cat

EXCELLENT POST CAT

Information without Condemnation
Understanding without Enabling

my hat is off to you

Helen