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65fstbk
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a newbie.....again
« on: Dec 30th, 2007, 11:15pm » |
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...Ya might want to get comfortable..I just re-read this and boy am I long winded....sorry for the length!...
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I had joined this site many years ago...I believe around '98 or '99 ...back in those days, I ask a few questions, but mainly just read the advise given by the fine folks on here. I am 45 years old now, with 4 daughters and 2 granddaughters. My youngest 2 daughters are currently in college (freshman & Jr.). Daughter #2 is getting married in Feb, and the oldest has graduated from college with a masters in education and currently teaches 4th grade and has been married for 2 years to a great guy. And last, but certainly not least is my wife of 24 years who has put up with me like no other woman would. I truly believe that she is the only person I know that "understands" what these headaches do to me. And to finish this intro, I am located in Ohio near Cedar Point (between Toledo and Cleveland)Back when I first joined the site, my user name was "Joe" but I couldn't remember my password and just created a new name. IIRC there used to be a member locater somewhere on the site (Im sure its still here, I havent checked the whole thing out yet...WHAT A CHANGE!)..I am member "Joe" from Green Springs Ohio (I moved a few years ago)
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I am posting again, because ...as you guessed it....they started in again last nite  . To be honest...I am not sure I can take these things again...We all have a story, and here is mine. I am episodic and have been getting HA since July 1983 (thats the first one I remember)..of course I didn't go to the Dr for many years and "roughed" it out. Once I finally went (wifes urging) I was diagnosed with CH...about 2 moths later, my Dr moved to New York, and quite frankly, I haven't found one since that has a clue what CH are...ok...the last one had somewhat of a clue, as he said he had treated a guy before who had them. This Dr was the first to prescribe a drug that was listed on this site as having some effect. (Verapamil & Maxalt)...and now he is gone also. The last episode I had I though I may "becoming" chronic (If thats possible) because they lasted for 4 months with4 to 5 attacks a day..I guess you could say I was lucky because they primarily came at night so nobody at work had to see me having an attack...how-ever, I was like the walking dead..because as you know..if I got a couple hrs sleep a night I was doing good....These attacks were pretty regular for nearly 20 years...3 cycles a year..usually lasting 6 to 10 weeks...(I have to go on my memory on these figures...I lost my "notes" when we moved 3 years ago)..I gotta say, at the end of the last cycles, the pain was significantly less...say a 5 or 6 on the scale....then when it ended...IT ENDED!!! for 4 years NO HEADACHES!..dont know why, and I dont care to question it....now I know that there are alot of you guys/gals out there who are chronic that would give anything for even a week of being PF....so...yes I got a bonus...but...vacation is over!!! last night about 5 am I was rudely awaken with something wrong with my head...It took all of 5 seconds to KNOW what was going on .. It "only"lasted about 45 mins...I still had the Maxalt in the bed stand beside me...its WAY expired, but ya know...I really didnt care...I took one...maybe it worked, or maybe the HA run its course IDK ..but what has me the most worried, is the fact of how HARD it hit. I would say at least an 8...and if the past is any indication, they will only get worse...and thats why I make the comment, that I don't know if I can take it this time. I have been having shadows all day...I have started the Verapamil...but of course that will take a few doses to get into my system, so I am pretty confident I know what the middle of the night has instore for me. ..Dont get me wrong..I am VERY thankful for the 4 PF years I had...but ...that almost makes it seem worse knowing what is in store....enough rambling...this is way to long..I just wanted to re-introduce myself and vent a little...Thanks for the place to hang out at night 
Joe
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Batch
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Re: a newbie.....again
« Reply #1 on: Dec 31st, 2007, 3:49am » |
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Joe,
Do yourself a favor and see your MD or neurologist for a prescription for oxygen at 15 liters/minute. We're all wired differently when it comes to preventatives and abortives, so what works for one may or may not work for another, not work the same, or have a nasty side effect. Having said that, oxygen therapy is almost universal as the most cost effective and least invasive abortive available to cluster headache sufferers. There are no real side effects and it is perfectly safe.
V/R, Batch
Your Local O2 Pusher
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Bob_Johnson
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Re: a newbie.....again
« Reply #2 on: Dec 31st, 2007, 8:55am » |
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Very first step: find a good doc and starting working on the complex of issues which define CH.
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1. Search the OUCH site (button on left) for a list of recommended M.D.s.
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
4. http://www.achenet.org On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder" which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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After this step is taken, start exploring the buttons (left). The OUCH site is going to be new for you and is full of useful information.
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Bob Johnson
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vietvet2tours
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Re: a newbie.....again
« Reply #3 on: Dec 31st, 2007, 10:34am » |
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on Dec 31st, 2007, 3:49am, Batch wrote:Joe,
Do yourself a favor and see your MD or neurologist for a prescription for oxygen at 15 liters/minute. We're all wired differently when it comes to preventatives and abortives, so what works for one may or may not work for another, not work the same, or have a nasty side effect. Having said that, oxygen therapy is almost universal as the most cost effective and least invasive abortive available to cluster headache sufferers. There are no real side effects and it is perfectly safe.
V/R, Batch
Your Local O2 Pusher
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Yep what Batch said.
Potter
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Brew
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Re: a newbie.....again
« Reply #4 on: Dec 31st, 2007, 11:02am » |
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You need to track down your former doctors and request to have your chart(s) transferred to whoever your new neurologist. There's no excuse anymore in my book for a neurologist not knowing how to treat CH.
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Bob_Johnson
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Re: a newbie.....again
« Reply #5 on: Dec 31st, 2007, 11:05am » |
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The author is a physician who used to participate here.
So, can use of oxygen cause harm? Yes it can. Oxygen is actually very toxic to the lungs (as strange as that sounds). Concentrations above 21% (room air), cause damage. Small amounts of damage can be repaired. At large levels, though, the damage can cause permanent scarring.
Defining how much the human lung can tolerate without damage is still debated. In fact, some suggest that previous exposure to high dose oxygen can be protective (increases the production of the bodies defense mechanisms against free radicals such as oxygen). There has been good documentation, however, of lung damage done on patients exposed to high dose oxygen for extended periods of time, some as short as 24hours on 100% oxygen.
So, what does this mean? It means that the long term effects of using oxygen for treating CHs are not well known. It is advisable, however, to limit each exposure as much as possible, and not taking in oxygen unnecessarily, such as sleeping with it on.
[From: "new visitors" button --> AskDocGreg page.]
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Bob Johnson
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tankman
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Re: a newbie.....again
« Reply #6 on: Dec 31st, 2007, 1:12pm » |
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Just a thought, I tried Maxalt, didn't work fast enough for me when my headache was already gone too long, just like any other pill form. My suggestion is Imitrex, and then I see someone here on this sight even suggesting to break up the imitrex up even into smaller doses. But unless your a healthcare professional, you might not want to do this cause you might inadvertantly contaminate your product that goes under your skin. Well, just wanted to throw in that suggestion. Imitrex has helped me from going to the ER about at least 40 times now. David
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Brew
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Re: a newbie.....again
« Reply #7 on: Dec 31st, 2007, 1:19pm » |
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on Dec 31st, 2007, 1:12pm, tankman wrote:| Just a thought, I tried Maxalt, didn't work fast enough for me when my headache was already gone too long, just like any other pill form. My suggestion is Imitrex, and then I see someone here on this sight even suggesting to break up the imitrex up even into smaller doses. But unless your a healthcare professional, you might not want to do this cause you might inadvertantly contaminate your product that goes under your skin. Well, just wanted to throw in that suggestion. Imitrex has helped me from going to the ER about at least 40 times now. David |
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Post #3 and you're calling into question the combined wisdom of hundreds, nay thousands of sufferers, representing tens of thousands of hours of suffering and how to deal with it?
My suggestion is to read more.
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Batch
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Re: a newbie.....again
« Reply #8 on: Jan 1st, 2008, 1:07pm » |
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Bob,
We love you dearly for being able to point out sources of excellent information on cluster headaches and their treatments, but I've got to disagree with you big time on the way your post characterized the risks of oxygen toxicity. The way it’s stated without context or perspective, these risks will scare away the very people who desperately need this abortive therapy, but have yet to give it a try.
Naval Flight Surgeons and Aviation Physiologists have documented the safety of breathing 100% oxygen many times over the last 30 to 40 years. Unfortunately most doctors and neurologists have never been exposed to aviation physiology so are totally clueless and unaware of this information. That shouldn’t sound strange as we still have too many doctors that think only men get cluster headaches… Doctors clearly make mistakes as did the author, Doc Greg, who you’ve sighted. If you want further proof, ask him how much training he’s had in aviation physiology.
I’m a retired Naval Aviator and also a certified SCUBA Diver. In 24 years of Naval Service and hundreds of open ocean dives, I’ve received more training in aviation and diving physiology than the average physician or neurologist. I’ve also flown over 3000 flight hours in Navy fighter aircraft and all of that flight time was spent breathing 100% oxygen. The average sortie time was also well over two hours… I’m still here… And, I might point out that after all these hours breathing 100% oxygen, not one of my annual flight physicals in over 24 years, indicated any problems or symptoms of oxygen toxicity.
Finally, I’ve been using oxygen therapy very successfully for over three years for my cluster headaches and have not had one problem or symptom associated with oxygen toxicity... In fact, other than problems with defective NRB masks, I’ve had no problems using 100% oxygen therapy for any of my cluster headache attacks.
on Dec 31st, 2007, 11:05am, Bob_Johnson wrote:The author is a physician who used to participate here.
So, can use of oxygen cause harm? Yes it can. Oxygen is actually very toxic to the lungs (as strange as that sounds). Concentrations above 21% (room air), cause damage. Small amounts of damage can be repaired. At large levels, though, the damage can cause permanent scarring.
Defining how much the human lung can tolerate without damage is still debated. In fact, some suggest that previous exposure to high dose oxygen can be protective (increases the production of the bodies defense mechanisms against free radicals such as oxygen). There has been good documentation, however, of lung damage done on patients exposed to high dose oxygen for extended periods of time, some as short as 24hours on 100% oxygen.
So, what does this mean? It means that the long term effects of using oxygen for treating CHs are not well known. It is advisable, however, to limit each exposure as much as possible, and not taking in oxygen unnecessarily, such as sleeping with it on.
[From: "new visitors" button --> AskDocGreg page.]
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Here’s some more information on breathing 100% oxygen that should put things in perspective…
Navy and Marine Corps pilots have been breathing 100% oxygen for over 60 years while flying tactical aircraft. The average mission length for these pilots was and still is well over two hours. In all that time, there has never been a documented case of oxygen toxicity from any of these 10s of thousands of Naval Aviators. The Naval Aerospace Medical Institute (NAMI) in Pensacola FL has been keeping records on Navy and Marine Corps pilots for over 50 years and not one problem has been documented if oxygen was used properly. Moreover, the US Navy requires pilots flying tactical aircraft to breathe 100% oxygen from takeoff to touchdown on all missions.
Now you’ve got to ask yourself, why would the Navy make pilots breathe something dangerous while they’re flying aircraft costing more than $35 Million dollars? The simple answer is the Navy doesn’t think breathing 100% oxygen is dangerous or that it poses a risk of pulmonary oxygen toxicity. I just checked my flight log book and found three missions over seven hours in duration… Again… I’m still here…
Is there a risk of pulmonary oxygen toxicity? Yes... You can also drink too much water and die…
But let's be reasonable and talk about the risk of pulmonary oxygen toxicity in the context of exposure time using 100% oxygen therapy as an abortive for cluster headaches...
There are any number of studies that indicate the symptoms of pulmonary oxygen toxicity start presenting themselves after a minimum of 6 hours, and more realistically, an average of 12 hours breathing 100% oxygen continuously at normobaric (sea level) pressure. These same studies will also tell you the effects are also fully reversible after as little as 30 minutes breathing normal air.
Again, let's be realistic... I know of no cluster headache sufferer that stays on 100% oxygen for 12 hours, nor would any of us routinely have that much O2 on hand. It would take 3 M-size oxygen cylinders to have enough oxygen to support 12 hours of continuous use.
If the average cluster headache sufferer is using the currently approved oxygen therapy at a flow rates of 10 to 15 liters/minute... The average abort time using this therapy for a Kip 8 would be around 30 minutes... Even at 8 attacks in a 24-hour period, the total oxygen time would be only four hours, and there would be periods breathing normal air of at least two hours between each session of oxygen therapy.
The bottom line is using 100% oxygen therapy as a cluster headache abortive is very safe. It is even safer than using imitrex with its well documented and potentially hazardous side effects.
I will be more than happy to post the US Navy Dive Tables and the Hyperbaric Oxygen Therapy (HBOT) Table VI used by all Navy hyperbaric chamber personnel when treating diving sickness. These tables provide the safe exposure limits for using 100% oxygen therapy at two and three atmospheres of pressure. That’s equal to 30 to 60 feet under water. Unless I’m mistaken, nearly all cluster headache sufferers conduct their oxygen therapy at or near sea level pressure or one atmosphere where exposure times would be greater, not 60 feet under water… These tables provide ample proof that using 100% oxygen therapy is safe.
Oh yes… Free radicals… Read Ozone that breaks down to a single oxygen atom (a free radical) and an oxygen molecule (O3 <-> O + O2)… Free radicals are a red herring with respect to using 100% oxygen therapy as a cluster headache abortive…
Medical grade (USP) oxygen contains no Ozone… You could however take a walk in Los Angeles or any other big city when they’re having a SMOG alert where you would breathe in more Ozone in five minutes than you could ever get out of 20 to 30 M-size O2 cylinders… Again, lets keep things in perspective…
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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Bob_Johnson
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Re: a newbie.....again
« Reply #9 on: Jan 1st, 2008, 10:17pm » |
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Re. your instant message to me:
Print out this articles and share with your doc,
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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You will find mention of Olanzapine (Zyprexa) as an abortive. Worth a try becasue it has been very effective for several of us and, on a per dose cost basis, it's much less than Imitrex, and other triptans. Lithium, also in this article, has been quite effective for chronic CH.
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Bob Johnson
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