alleyoop

Hi Larry! It seems that as CHF said, met la pretty well nailed it with, "i have a baby alien in my head sucking the life out of me , twisting and turning" How are you doing ch-wise? We need to get together sometime? Best, Bob B.

In the meantime John, until you get a proper mask, you can do one or two things to improve on what you have. First, you can tape up the holes on either side of the mask to keep from contaminating the 02 with outside air. Second, if they gave you the right fitting, you can attach a bag (a one gallon freezer bag works great) like the one in the pic that Jeff posted. Just from looking at the pic that you posted of your mask, it doesn't look like this will work though. I just wanted you to know how to rig it if you do have the correct fitting. bobb

For those of us who grew up in the 50's and 60's, Owsley was much more than just the sound man for the Grateful Dead. His acid was simply the best. http://online.wsj.com/article/SB10001424052748703363904576200762281851194.html?mod=ITP_pageone_1 bobb

http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2011.01856.x/abstract bobb

Thanks Lee! I was able to view this link. I'm in high cycle, but it is a walk in the park, thanks to clomiphene. How about you? bobb

For some reason, I am unable to view this document.

Thank you CHf! I agree. This is much easier to comprehend and will be a terrific aide in getting people started using the 'correct oxygen therapy'. Your tireless efforts to help people on this board are absolutely commendable. bobb

Narelle, Are you considering using Xanax or Valium to help in the way that Dramamine would? Or are you thinking more along the lines of using one of these drugs to keep the CH down? If it is the latter, I would suggest that you use mushies (if you have them) either as a SPUT (small piece under tongue) or take a quarter to half gram just before going through security. That small amount should not be enough to 'trip', but hopefully would be enough to ward the CH off through the trip. I have successfully done this to avoid hits during a flight. bobb

Yes.

All of our friends on the west coast are in our thoughts and prayers today.

Hi John, One other thing: You need to take control of your health and life vs. letting others control either. I have no idea how old you are or how you present yourself, but both, and especially the image you project, can play a major role in how others react to you. I grew up in the sixties and seventies when most young men grew their hair long. I remember a senior member of management in a company that I worked for, trying to make a point about presentation. One of the younger employees (with long hair) had gotten a speeding ticket. He had complained that the officer had pulled him over and told him that although he was in the posted speed limit, that he had been going too fast for conditions. Our boss said that this would never happen to him. He was trying to make the point that if this guy had a shorter haircut, that he probably never would have been ticketed. I'm not saying that you need to do anything about your appearance. All I'm saying is that first impressions go a long way. If you exude the appearance of someone who knows what he wants and knows what he is talking about, then you will be taken much more seriously. I know you are hurting, and I know how overwhelming all of the information on this board can be, but please try to wade through it. As I have said many times, knowledge is power. Advocate for yourself and you will be in control of your health. I sure hope all this makes sense, and I hope you don't think that I am talking down to you, or criticizing you in any way. As Jeff says, "you need to be FIRM with both the doc and oxygen supplier." I will also PM you my phone number if you want to talk. All the best, bobb

John, hit the "Menu" button and click on "ch.com oxygen page." READ

From the CH.com oxygen page (accessed from the "Menu" button on the left hand side of this screen): [highlight]Oxygen concentrator: It is also called a "machine" or "Oxygen generator" ... Whatever it is called; it does not work for most of us. The concentrator takes normal room air, and then purifies it so that it is mostly oxygen that it generates. You do not have to refill any tanks, or any of those "hassles" ... Sounds great, huh? It would be if it worked. The key words to what I described are "mostly oxygen". It starts out at producing about 75 to 80% oxygen, and then after it warms up, it could get as high as 95% oxygen. Most machines can only produce about 7 LPM of "mostly oxygen". There are two important reasons that the concentrator is not for us. We need 100% oxygen and we need it at a minimum of 15 LPM. Now, I WILL admit, there are a few, who can sometimes get results from this, but not fast enough, and nowhere near as regularly as with the bottled oxygen. If your doctor or supplier tries to tell you it is just as good, don't believe them. Get the bottled oxygen. [/highlight]

The machine is about as useful as a car without an engine! You need the tanks.

ROTFLMAO!!!

Control comes from being pro-active and advocating for yourself, versus blindly following a doctor's orders, no matter how educated or well-meaning he or she may or may not be. Just keep that attitude and you'll be fine John! bobb

Sad, yes. I'd go so far as to call it a crime that they are so poorly educated. bobb

The Associations Between Headaches and Psychopathology: A Survey in School Children http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2010.01781.x/full

dereksgirl, First off, I hope that Derek's cycle is in fact ending. I will try to answer your questions to the best of my ability. The new activity that Derek is getting is most likely rebounds from the triptans, as you suspected. Medication Overuse Headache (MOH) usually presents itself somewhat differently than CH from what I have read. As far as turning chronic goes, time will tell. Hopefully not, but unfortunately many have reported turning chronic with suspicions of triptans being the culprit. I am not dissing triptans; they have their time and place, but this brings me to your last question. Legalities aside, and speaking only from personal and anecdotal evidence, I feel that the less traditional therapies that are tried, the better off Derek will be, and the better the chance of successful busting. Some of the traditional therapies, including but not limited to prednisone, verapamil, topomax, lithium and opoids have such serious side effects that they can and usually complicate one's health in the long run. I'm not saying they don't have their place, but legalities aside, I think they are better off left in the medicine cabinet or better yet, never filled. Just my dos centavos, bobb

How about Little Red Riding Hood?

At least half from what I understand.

Les, are you suggesting that my two episodic brothers and I (primary chronic) are all coincidentally suffering because of some kind of emotional or stress related incident? BTW, my hardware works just fine. bobb

mountrakis, I would do a prevent (maintenance) dose in either July or August in order to stave off the next cycle, or at the first hint of CH. Any one of the busting meds should do. Multiple doses are usually only necessary after a cycle has started and set in. bobb

As am I Hipshot.

Maybe Dan. For me, it was seven years ago that my neurologist told me that as a chronic who didn't respond to any meds or treatments, that my only option left was brain surgery, specifically a trigeminal rhizotomy. That was impetus enough for me to become my own advocate. bobb