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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Doctors give me a headache
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Message started by tafty on Jun 8th, 2009 at 4:54pm

Title: Doctors give me a headache
Post by tafty on Jun 8th, 2009 at 4:54pm
Hi all.  I was a member years agao and thankfully I have been so under control I have not had much to say.  I have suffered for 14 years now and tell the doctors what I need.  Well, last week I started the worst cycle I have had in over 5 years.  Prednisone..Maxalt..hot showerts.. the usuall not working.

I tried to call my new doctor who is associated with a LARGE hospital here in Cleveland....what do I get.. NOTHING.  I wanted to keep my prednisone tapper higher for longer and maybe try an alyternative to maxalt.  Three call backs later from assitants, and what do I get..."Do you want to try a different Doctor"  This is BS.

When I lived in Florida and in Conneticut I was able to find a doctor who gave a Shat and actually read something on Clusters.  I am sorry to rant but I am pissed.  So I started Verapamil  Which I hadnt taken in over 10 years.. Upped my prednisone and looking for an O2 tank because they want me to make an appointment to come in and use O2...thats convinient huh


Any Doctors in Cleveland out there that can give me some one on one time...

Thanks

Jason

Title: Re: Doctors give me a headache
Post by Linda_Howell on Jun 8th, 2009 at 5:47pm
Hi Jason,

Here are some sufferer reccommended Drs. in Ohio.  Looks like there are 2 in the Cleveland area.



  Ohio



Francis O'Donnell
Columbus



Luis Pagani
Cincinnati



Robert S. Kunkel
Cleveland



Dr. John Kelly

Southeastern Center for Headache and Pain
Greater Cincinnati Area



Donita Rechnitzer
Westlake



Carl Anseven
Boardman



Mark Stillman

Cleveland
 

Dr. John Horn

Grove City

 

Dr. Joseph Nicolas

University of Cincinnati

WHO wants you to make an appointment to come in to use 02???   That's ridculus!!!!!  You need a script from a Dr. to get oxygen...you take that script to a supplier like 'Apria'  or Lincare"  and get it filled.

Barring that...can you get your hands on a welding tank?

Check out the yellow link to the left of where you're reading this right now.  If you have any questions....please feel free to ask us.  We want to help.


Linda

Title: Re: Doctors give me a headache
Post by Batch on Jun 8th, 2009 at 10:39pm
Jason,

Understand...  The way I see it they've set you up to fail the oxygen therapy test.  If you do go in and have an attack while there, the lower flow rates (7 to 9 liters/minute) that most PCPs and neurologists prescribe are too low to be effective against cluster headaches above Kip-4 to 5.  If you get a heavy hitter at Kip-6 or above, a flow rate this low will be ineffective in aborting your attack.  This will result in an incorrect assessment regarding the effectiveness of oxygen therapy and give them the excuse they need to deny you a prescription for oxygen therapy.

There's a good way around this trap, but it will take a little initiative on your part... and that's to take control of the oxygen therapy demo to make sure you have a properly configured non-rebreathing oxygen mask and that you get a flow rate high enough to support hyperventilation.

How you do this is simple.  First of all make sure they give you a non-rebreathing oxygen mask with both exhaust flapper valves.  Ask to see the mask as soon as you get to the clinic/doctors office.  It should look like the following photo:

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Please note that both exhaust check valves are present in the photo above... This is the right configuration for a non-rebreathing oxygen mask.

If one or both the silicone flappers are missing from the mask they give you, TELL THEM the mask is not configured properly and to bring you a second mask.  You can remove the silicone disk from the second mask and install it easily on the first if it's only missing one check valve.  If both disposable masks come without any exhaust check valves, TELL THEM any failure of oxygen therapy to abort you attacks will be due to an improperly configured non-rebreathing mask and therefore not a valid test.

Once you have a properly configured non-rebreathing mask, check out the wall mounted oxygen regulator they want you to use.  Most medical facilities use a flowmeter type oxygen regulator like shown in the photo below with a clear lucite venturi tube calibrated to a maximum flow rate of 15 liters/minute and a needle valve to adjust the flow rate...  Flow meter type regulators like this will deliver oxygen at flow rates well above 15 liters/minute.

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You'll need an oxygen flow rate of at least 25 liters/minute and preferably higher in order to support a respiration rate high enough to hyperventilate.  To obtain this flow rate, twist the needle valve open until the pellet inside the clear venturi tube rises to the 15 liter/minute graduated level then twist the needle valve open further until you have a flow rate to sustain a respiration rate of 30...  

The simple way to gauge this flow rate and respiration rate is to inhale for a "One Potato" count and exhale for a "One Potato" count.  That should result in a complete respiration cycle in 2 second for a respiration rate of 30.  You'll need to adjust the volume of oxygen you inhale at this rate to keep the reservoir bag from filling tightly an not so fast as to collapse it completely. If you get ahead of the oxygen flow rate the reservoir bag will be collapsed most of the time... If this happens, continue to twist needle valve open until you achieve a balance on the reservoir bag between fully inflated and completely collapsed...

Even if you don't have a cluster headache attack while there, ask to use the oxygen therapy anyway.  Using the procedure above in front of nurses and doctors not up to speed with respiratory physiology will likely make them nervous.  Stay cool and tell them you feel just fine...

You'll be properly prepared if you read my post on obtaining a prescription for oxygen therapy...  Just click the link below:

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Make sure you print out the links at the end of this post to take along when you go in to try oxygen therapy...

If you've got any questions, please shoot me a PM.

Take care,

V/R, Batch

Title: Re: Doctors give me a headache
Post by E-Double on Jun 8th, 2009 at 10:52pm
Have you tried Clevland headache clinic

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Title: Re: Doctors give me a headache
Post by FrankF on Jun 8th, 2009 at 11:09pm
So Jason, does the doctor want you to go in so they can teach you the proper way to use O2? Or evaluate if you need O2? If it's to teach you the proper way to use O2, I can see it. Otherwise it's a waste.

I remember the first doctor who agreed to prescribe O2. I got a call from his nurse saying I needed to go in for a blood oximetry test. I promptly called the doctor and told him his stupid nurse wants me to take a blood oximetry test. I think he said something about that being bullsh*t for cluster headaches and I got the O2 anyway.

Title: Re: Doctors give me a headache
Post by Batch on Jun 9th, 2009 at 11:44am
Frank,

Excellent post!

V/R, Batch

Title: Re: Doctors give me a headache
Post by Iddy on Jun 9th, 2009 at 7:26pm
I believe it was Dr M,J Stillman in Cleveland who wrote,Testosterone Replacement Therapy for Treatment Refractory Cluster Headache.

Seems he would be worth a look into.

Best of luck.

Iddy

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