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Brenda G

my rant/question

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While I was ranting to my sister about my recent doctor appointment - she (dr.) practically laughed at me for asking for a prescription for O2, but suggested other drugs and wants me to see a neurologist. (already had a scan, my brain's fine)  I came up with a question.  These drugs that they say work for cluster headaches (lithium, prednisone, triptans, etc.) - who do they work for?  They didn't work for me (was at the ER twice, big waste of time) and doesn't sound like they worked for anyone else around here either.

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Get the oxygen and learn how to use it properly. It will be your main line of defense regardless of which medicines your pain specialist who knows all about cluster headaches or your neurologist who knows all about cluster headaches or your headache specialist who knows all about cluster headaches and you who will soon learn all about cluster headaches together decide are appropriate for you. Do not make an appointment with anyone until you are clear about their qualifications to treat you.

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Brenda those drugs you mention and loads of others never worked for me either. Neither does oxygen, not even a little bit.

The only one that ever helped me was a pred taper at very hi levels for a day or 2 break

There are many who feel they help a lot its just the luck of the draw.

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Bredna:

when you properly with the proper equipment O2 is 90% successful. Don't know how MJ has been using it but if you use the right mask, flow of 15 minimum to 25 lpm and get a plentiful supply so you don't feel the need to ration, you will very likely be able to abort every ha within 5 to 20 minutes. There is plenty of info here. Not a cycle buster, but it does abort headaches. Just click on the menu to the left and then the CH.com Oxygen page. It wil take a week to get everything though, so if you are hurting now and in cycle, PM me. I may be able to speed things up for you. jay

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Brenda: I think it is nearly unconscionable that your Dr. laughed when you asked for oxygen. Personally, I would never go to that doctor again. Bonkers, MJ, and jayhedges all agree on the value of oxygen, and from what I've seen, so does nearly everyone else on the board. I would also get some RC seeds ordered and on the way in case you decide to go the busting route.

If you're really curious about the different meds (lithium, prednisone, topiramate, etc.) I personally recommend using a site like rxlist.com to access the drug monographs and focusing specifically on the mechanism of action. Most of these medications work to try to correct imbalances of certain neurotransmitters or corticosteroids, etc. Basically, something is out of balance in your system and the medications are trying to fix that. Unfortunately, we don't yet have good technology to figure out what's going on neurochemically - imaging technology like MRI or SPECT only shows us structural abnormality or indirectly metabolism, doctors can't ethically take a biopsy of healthy brain tissue for lab analysis, and most scientists think the recently developed saliva analysis is hooey.

I would also recommend you take up jayhedges on his offer to help with an oxygen setup. Other members have found him to be very helpful in this regard.

I wish you the best of luck in finding peace and getting pain free days.

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Any neurologist that doesn't know that 02 is the first line of defense for cluster headaches might also be interested to learn of the new discoveries of cell phones, the internet and unleaded gas.

Just as with any disease, there are wide ranges of severity. Some people do have ood success with prescription meds. Some have good success with lithium and others might find relief with verapamil. With many, a combination of some sort works. Success means different things to different people though. Some are able to eliminate or greatly curb the effects of their cycles while others may see a 40% decrease in effects as success.

Nothing that comes with FDA approval will stop a cycle. Prednisone can stop attacks while you're on it but the attacks will return as the dose drops or ends. If you have short cycles it can get you through until the cycle ends but long term use can be hazardous to say the least.

Many people on this site are here in search of something that can end a cycle early or stop the next one from beginning. Mostly because they are, let's say, less than happy with the results that prescription meds have afforded them over the years.

Bobw

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I just want to metion my wonderful doctor.

I was sat on pred when i saw a specialist. She didn`t care about the sideeffects i got. Went to my doc, i told him i never want to do this again, ever in my life. And he actually said that i shouldn`t either. We should turn every stone, to find the most natural treatment.

And he wondered how i used o2, when i told him what info i got, he now actually use this kind of forums to get info. He says when treating a rare or difficult condition, we have to look at the ones who have it, what they tried and use the results they got. Because they often try alt med you can use for life, and doctors doesn`t.

He`s a wonderful man, a man of respcect.

And maybe, if more and more people give info from alt treatments. From the use of o2, ginger etc, more and more doc`s will turn he`s way?

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LOL, Cell phones, Internet and unleaded gas!! Cutting edge for this Doc is the Clapper and the Chia Pet.

There is so much information on 02 regarding it being the main abortive for CHs, I am a Kaiser member and even they have it listed as the main abortive, although they dont know how to prescribe it, the typical RX is 8-10 lpm, that didnt work for me, 15lpm was the ticket, they dont carry 25lpm regulators.

I find it surprising that in relation to its effectiveness that the Doc cant just look up the treatment and say "hey, lets try it, here is your script" My God, its only 02.

the doctor that shrugs the patients suggestions without any further consideration, especialy with CHs, should be disciplined. "Bad Doctor"

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Any neurologist that doesn't know that 02 is the first line of defense for cluster headaches might also be interested to learn of the new discoveries of cell phones, the internet and unleaded gas.

this is why i log on!  lol.  all I can say is this website has been more helpful than any doctor I have ever seen.  i think 20 years ago the docs i saw hadnt even heard of ch.  that doctor needs to go back to school.  Brenda, your the educated one re: the 02.  I hope you get oxygen.  There are many posts on here re: "welders oxygen."  i have been using seeds and have been sucessful.  i just went thru a cycle w/o oxy.  i DON'T recomend it.

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Brenda,  Jay, above on your post is the 02  [smiley=engel017.gif], if you are having trouble getting the 02, he can help you.  Dont be in pain.  Message him.

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