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IT'S BACK (Read 1079 times)
JASVAL
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IT'S BACK
Jul 9th, 2009 at 2:22pm
 
I have suffered from CH for a little over 10 years now. I am now 26 years old. For the first 3-4 years my doctor did not know what they were and just kept trying every test, scan, and drug he could think of at me to try and relieve the pain. Sometimes it was almost like he did not believe me when I told him the amount of pain I was in and how often it occurred. Back then I was getting anywhere from 4-8 a day. My first cycle lasted about 3 years with never more than a couple of days rest. I finally made an appointment with a neurologist and discovered that I was having cluster headaches. After about 3 months he was able to get them under control and I went an amazing 1 full year without a CH. Over the next 2-3 years I had about 3-4 cycles that lasted anywhere from 2-4 months. My doctor would put me on the same treatment each time(pred step down, verapimil twice a day, and Imitrex Inj to abort the bad ones) After the last cycle ended I have been without a CH for 2-1/2 years.......until about 2 weeks ago. The first 4 I had were only about a K2-K3. And they were very spaced out. about one every other day or so. Last night I was woken up at about 2:00 am with a K5 that only lasted about 10 minutes and never got any worse. I went back to sleep not knowing what to expect next. At 7:00 am I woke up with a K2 that progressed rapidly to a K10 in about 3 minutes and lasted about 1-1/2 hours. I had almost forgotten how bad the pain could get. I am scheduled to see the doctor tomorrow to start back on meds and I am going to try and get 02. I have never tried 02 but I have been reading about all the success everyone else has had so I am going to try and get a prescription for it, though I have no idea where to get the 02 or how much it will cost. I am also thinking of trying the "clusterbuster method". Sorry about the rambling. I just don't have anyone else to talk to that can relate to the pain that we all know so well. Any advice or opinions on the O2 or the CB method would be greatly appreciated.

James
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Jimi
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Re: IT'S BACK
Reply #1 - Jul 9th, 2009 at 2:30pm
 
I am assuming that you have the link to the Clusterbusters web site, if not let us know and we will supply it for you. I cannot help you there as I have never tried it. But it is very effective for many.

As far as 02 is concerned, make sure that he prescribes a regulator with a minimum of 15 LPM airflow. I could get releif with 10LPM but many need more. Some even use 25LPM.

Also ask for a non-rebreather mask as they are more suited for ch's. Good luck and don't take no for an answer.
BTW.........welcome to the board.
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Linda_Howell
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Reply #2 - Jul 9th, 2009 at 2:48pm
 
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I have no idea where to get the 02


Look in the phone book under Oxygen suppliers.  If they have a "Lincare" or an "Apria"  you're in luck. 

I pay $10.00 per e-tank.  I had a meeting with the manager of Apria and told them I wanted to leave the Ins. Co. out of it due to the high mark up when working with Ins. co.s   They agreed to 10 per tank.
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JASVAL
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Reply #3 - Jul 9th, 2009 at 3:10pm
 
Thank you for the responses. I found both Apria and Lincare in the phone book. Is one better than the other or are they about the same? Can they supply the regulator and mask also or do I need to get them somewhere else?

James
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Linda_Howell
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Reply #4 - Jul 9th, 2009 at 3:28pm
 
I've used both.  Apria being the latest and I was very pleased with them.

Yes, they can supply the regulator and mask, but if you want a GOOD mask, you can purchase that right here.  Over to the left, there is a yellow button/link that says ch.com store.  You will see the opimask there and the prices are very good.

Linda


P.S.  I forgot to welcome you.   Glad you're here and you are among friends now who totally understand.   Ask any questions that come up.  No question is stupid.
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Marc
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Re: IT'S BACK
Reply #5 - Jul 9th, 2009 at 4:01pm
 
Jimi wrote on Jul 9th, 2009 at 2:30pm:
.............

As far as 02 is concerned, make sure that he prescribes a regulator with a minimum of 15 LPM airflow. I could get releif with 10LPM but many need more. Some even use 25LPM.



And many of us use much higher than that, in order to get the maximum benefit by hyper-ventilating on pure O2 for a few minutes.  Smiley  Oxygen "didn't work for me" for many years until realized that I simply needed more flow.

I realize that I repeat this often, but I just can't stand the idea of someone potentially suffering needlessly like I did just because they didn't know.

Marc
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Linda_Howell
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Reply #6 - Jul 9th, 2009 at 4:54pm
 
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I realize that I repeat this often,


And we're grateful when you do Marc.    02 for me, has always worked.  Even at a lower lpm.  However when I went and upped it to a 25 lpm flow it went away faster, with a WHOLE lot less suffering. 

Since no prevent has ever, ever worked for me in 21+ years...I bow down in humble praise to my e-tank as well as my welders tank every day.   Wink

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JASVAL
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Reply #7 - Jul 10th, 2009 at 1:15pm
 
OK....I WENT TO THE DOCTOR AND GOT THE SAME SET UP AS MENTIONED IN FIRST POST. I ALSO TALKED HIM INTO GIVING ME A PRESCRIPTION FOR O2. BUT HE WOULD ONLY PRESCRIBE 3 LPM. I HAVE A FEW QUESTIONS. I NOW KNOW WHERE TO GET THE OXYGEN BUT WILL THEY GIVE ME ANY SIZE TANK THAT I WANT? I AM WANTING A M TANK FOR MY HOME. ALSO, WHERE CAN I GET A REGULATOR THAT GOES UP TO 25 LPM FOR THE M TANK?

JAMES
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monty
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Reply #8 - Jul 10th, 2009 at 1:38pm
 
I give my kids a generous allowance - 5 cents each month!

Seriously, 3 lpm of oxygen is not likely to work for clusters - your doctor is thinking angina/ephysema, where 3 lpm might be appropriate. It is not enough for clusters, where supersaturating the blood with oxygen can usually abort, but bringing hemoglobin up to 98-100% usually doesn't.  Ten to 15 liters a minute is what usually takes, sometimes more.
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« Last Edit: Jul 10th, 2009 at 5:43pm by monty »  

The outer boundary of what we currently believe is feasible is far short of what we actually must do.
 
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Val_
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Re: IT'S BACK
Reply #9 - Jul 10th, 2009 at 2:11pm
 
JASVAL wrote on Jul 10th, 2009 at 1:15pm:
I NOW KNOW WHERE TO GET THE OXYGEN BUT WILL THEY GIVE ME ANY SIZE TANK THAT I WANT? I AM WANTING A M TANK FOR MY HOME. ALSO, WHERE CAN I GET A REGULATOR THAT GOES UP TO 25 LPM FOR THE M TANK?  JAMES

Hi James,
I use Apria.  I asked for several E tanks and an M tank.  They had no problem with this - my insurance does not charge by tank, but by regulator.  They will only give you the regulator that your doc Rxs - I got one on ebay that went up to 25LPM for my E-tank.  Here are the #s to look for if you go that route:
"CGA870" connector that you would use on an “E” or “D” tank        
"CGA540" connector for the larger “M”, “H”, or “T” tanks

Here is the link on ebay for a E tank regulator that goes up to 25 -
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there are many similar - but you do need at least 10-15, as was mentioned.  At 15LPM I still run out of O2 in the bag sometimes.  Still looking for a decent-priced regulator on ebay or amazon that goes to 25 LPM for my M-Tank, they run $80 or so new from distributors.  But my reg at home for my M tank goes to 15LPM.  You might want to go ahead and pay the $80 if they give you a reg that only goes to 8LPM... see what you get when they deliver???
If you can pay and decide to get a regulator for the M tank beforehand, google "CGA540" and make sure it has settings you want - 0-25LPM is just a suggestion!

Good luck with the company you choose!!

Val
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Callico
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Reply #10 - Jul 10th, 2009 at 5:40pm
 
When I went on Oxygen a few years agoI also was out of insurance, and as broke as a church mouse.  I got the script from my neuro and called several suppliers about price, thinking I was going to have to go the welders route, but I found one supplier who had a sister with CH, so he was willing to give me the O2 at a cheaper price than the insurance cos paid since I paid cash.  It turned out to be pretty economical, and he threw in the masks and bubbler.  It never hurts to ask for a discount when paying cash.

Jerry
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Re: IT'S BACK
Reply #11 - Jul 10th, 2009 at 7:34pm
 
JASVAL wrote on Jul 10th, 2009 at 1:15pm:
OK....I WENT TO THE DOCTOR AND GOT THE SAME SET UP AS MENTIONED IN FIRST POST. I ALSO TALKED HIM INTO GIVING ME A PRESCRIPTION FOR O2. BUT HE WOULD ONLY PRESCRIBE 3 LPM. I HAVE A FEW QUESTIONS. I NOW KNOW WHERE TO GET THE OXYGEN BUT WILL THEY GIVE ME ANY SIZE TANK THAT I WANT? I AM WANTING A M TANK FOR MY HOME. ALSO, WHERE CAN I GET A REGULATOR THAT GOES UP TO 25 LPM FOR THE M TANK?

JAMES


James,

I'm sorry, but I was thinking about telling you how to possibly get a good deal on O2 and totally missed the most telling part of your post!  "But he would only prescribe 3 lpm"

More than a good supplier you need a new Dr.  Either that or print out some of the excellent info here on oxygen, in particular Batch's post a while back about getting O2 covered by insurance and getting it prescribed properly and take it to him and tell him you want him to get current on proper medical practice.   I hope you will be more politic than I would be, but 3 lpm for CH is not even remotely related to proper medicine.

Jerry
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