Hi everyone!

I haven't posted before, but I have been "lurking" for quite some time now.  I have to say the information on these boards is invaluable, and reading your comments has gotten me through many times when no one else understands.

So naturally, I was wondering whether you awesome people might have any input on my current situation.  I had a nasty cluster headache one evening and nothing to combat it.  A friend drove me to the local ER, and they gave me high-flow oxygen and the usual sumatriptan injection.  My issue is that my insurance company has deemed the situation "not an emergency" and refuses to cover it.  I would like to dispute this claim and was wondering if anyone has advice on certain key things to mention or "buzzwords" that would support the "emergency" status of my situation at the time.  Additionally, I would love to know if anyone else has been through this and, if so, what you did.

Honestly, I feel kind of lost, since no one seems to understand these stupid headaches.  After a while of feeling quite alone, I thought of these boards and felt almost instant relief at the idea of asking you all.  (I will also discuss this with my doctor and see if he has any input, of course.)

Thank you for any help you can offer at all!

-Margaret-  [smiley=dankk2.gif]

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Go to this web site, print out some of the info, and also give this web site to your insurance company. It might give them a better feel for what an untreated CH'er goes through, and why it is an emergency. Good luck. My experience with insurance companies is they refuse EVERYTHING the first time you submit it, but will usually do the right thing if you are persistent and have the info to back you.

Joe

Hey Margaret,

Welcome aboard CH.com...  You've come to the right place... 

The first suggestion is to stop fiddling around, see your primary care physician or neurologist, ask for an Rx for oxygen therapy and start on the anti-inflammatory regimen asap...  If this regimen works for you like it does for 70% of the CH'ers who find it effective, you won't need to do battle over insurance coverage for your cluster headache treatment costs.

The following anti-inflammatory vitamin and mineral supplements are available at Costco for $35 or 20 cents a day for a five month supply:

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Just take two of each liquid softgel capsules or tablets a day...  If you don't belong to Costco, most Safeway stores carry similar formulations that will work just fine.

Most medical insurance coverage policies cover the treatment of cluster headache.  Unfortunately, the low-life claims adjusters who work your claim for coverage are told to try and pull the wool over your eyes by telling you your policy does not cover treatments for the cluster headache disorder...  This is untrue unless your policy has a deductable clause for treatment costs...

The diagnostic and HCPCS codes for Cluster Headache follow if you're trying to get coverage for home oxygen therapy:

  ICD-9-CM Diagnosis Codes:
        Episodic Cluster Headaches – 339.01
        Chronic Cluster Headaches  – 339.02

   ICHD-II Codes:
         Episodic Cluster Headaches – 3.1.1
         Chronic Cluster Headaches  – 3.1.2

   ICD-10 NA Codes:
         Episodic Cluster Headaches – G44.01
         Chronic Cluster Headaches  – G44.02

Healthcare Common Procedure Coding System (HCPCS) Codes

        Equipment:
           E0424-E0425 Stationary compressed gaseous oxygen system
           E0430-E0431 Portable gaseous oxygen system

        Contents:
          E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit

        Modifiers:
          QG - Prescribed amount of oxygen is greater than four liters per minute (LPM)

As long as you have a signed Rx for oxygen therapy from your PCP or neurologist, and you arm yourself with the above diagnostic and treatment codes, you can tell these turkeys to suck swamp water and cover your costs for home oxygen therapy and your ER costs.

Go on the Internet and look up the coverage policy for your particular medical insurance company...  and have it ready when you call...

If you get push-back from the first claims adjuster, ask for the person's full name then ask for a supervisor...  Keep going up the chain until you get satisfaction...  It's a crappy game they play... but they can be beaten at their own game if you do your homework... and stick to your guns...

When you've done that...  kick back, have a cup of soup and sando...  then you can fiddle around with a satisfied feeling.

Take care and please keep us posted.

V/R, Batch

Find out what their definition of an emergency is. Then submit evidence to show that an untreated CH is an emergency by their definition and / or show their definition of an emergency is incorrect.

Guiseppi wrote on Jan 6^th, 2012 at 6:03pm:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Yup.... Go to this web site, print out some of the info, and also give this web site to your insurance company. It might give them a better feel for what an untreated CH'er goes through, and why it is an emergency. They will think "migraine"....you must dissuade them of this fallacy..... Good luck. My experience with insurance companies is they refuse EVERYTHING the first time you submit it, but will usually do the right thing if you are persistent and have the info to back you. Oh yeah!....don't give up...EVER...they want you to (it messes with their tiny minds when you don't)...it's the MO...be a PITA...and get thee a health care provider with a heart AND a head to ADVOCATE for you.... Joe

Best,

Jon

If you have a doc caring for you/Cluster, he would be the one to contact the insurance outfit.

If you don't have a doc providing care, then who/how are you obtaining preventive & abortive meds?

Beyond this crisis situation, you know that good care to stabilize you condition is the long term necessity.
====
LOCATING HEADACHE SPECIALIST

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

HI Margaret,
Glad you finally broke the ice and posted instead of just lurking.

Everything others have suggested is wonderful advice, especially those diagnostic codes shared from Batch. 

Something also you may consider when speaking with your doctor to help you with this claim appeal is the wording of your diagnosis.  It should read "Cluster Headaches", NOT something else such as "Cluster Migraine" or "Migraine headaches."

My neuro calls them "Cluster Migraines" and after I saw this on my medical record, I explained to him there are people who suffer from both Cluster Headaches and more commonly people who suffer from Migraine Headaches.  In which case the diagnosis might technically be called "Cluster Migraines." 

I shared with my neuro that I have no history of migraines, only clusters, and asked why did you write "Cluster Migraine" on my medical record?  He replied, that is what they are called among the neurological community.

Needless to say, my neuro is ignorant on the subject of CH's.

So you may consider making sure your diagnosis reads "Cluster Headaches" to avoid potential misunderstanding of your diagnosis, otherwise your insurance co may deny your claim appeal thinking migraines are not worthy of an emergency room visit.

That was long winded, lol, hopefully made sense to you Margaret!?

-Gregg in Las Vegas

You guys are amazing.  Seriously, thank you.  I knew you would rise to the occasion! 

Joe: Yes, I've been to the Ouch website, and they have some amazing things there!  I will definitely compile information/descriptions from this site, Ouch, and other resources to give them the best idea possible of what we go through.

Batch: Thanks for all the tips!  I actually had an oxygen setup in my old living situation (I moved out of state).  The chunk of clusters this ER visit one belonged to hit right after I moved (of course...).  As of now, I'm not due for another session for about 1.5 to 2 years, but I will definitely look into getting my tanks again!  I am also taking the anti-inflammatory regimen and Verapamil to help.  I never had an issue with any of this with my last insurance company, so I'll have to see how this one responds to the O₂ thing and likely beat them down for that as well as this ER bill.  Also, those codes are an **amazing** resource - thank you so much!

Mike: Their definition of "emergency" is something that is "life-threatening", although looking at a friend's ER visit that was covered, it's clear this isn't quite what they mean.  Rather, they just want it to be a situation where not going to the ER would cost them more in the long run than just paying the ER bill.  I'm not quite sure how to construe clusters as "life-threatening", since they're really not!  I think I'll just have to fight this in other ways.

Jon: I will definitely dispel the "migraine" thing right off the bat!  I thankfully have a good doctor on my side who actually understands clusters and seems willing to go out on a limb for me.  I imagine his word will be a great help.

Bob: Thankfully, I do have a physician who understands clusters and is willing to prescribe for me and work on them.  I agree that he will be one of my biggest assets here.

Gregg: I didn't find that long-winded at all!  And it was quite understandable. [smiley=tongue.gif]  Thanks for pointing out the possibility of a "cluster migraine" diagnosis - I hadn't realized that was even a "thing", and that kind of wording, of course, would be detrimental!!!  My head issues did start out as migraines, and I can assure you that one of them never sent me to the ER!  I want no confusion here that what I had that day may have been a migraine.

You guys have been more than helpful.  Thank you so much!  And, of course, if more things come up, I would be most grateful for any input you might have.

ReallyAViolinist wrote on Jan 8^th, 2012 at 7:03pm:

Mike: Their definition of "emergency" is something that is "life-threatening", although looking at a friend's ER visit that was covered, it's clear this isn't quite what they mean.  Rather, they just want it to be a situation where not going to the ER would cost them more in the long run than just paying the ER bill.  I'm not quite sure how to construe clusters as "life-threatening", since they're really not!  I think I'll just have to fight this in other ways.

Their definition which relies on you to determine if a condition is life threatening is seriously flawed. Unless you're a medical doctor with the appropriate skills, experience plus diagnostic equipment you will be unable to make a correct medical determination of if a set of symptoms is "life threatening" or not.

Perhaps you should ask the insurance company if they would provide written instructions on how you should perform this diagnosis without attending ER? I doubt they would write down that severe head pain should not potentially need urgent medical attention.

There is another name for CHs which is suicide headaches. I suppose that strongly implies that untreated CHs may be life threatening. There are over 100 scientific papers accessible by Google Scholar (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) which describe CHs as suicide headaches, so this is an established scientific documented link.

I'm not sure how they can argue their way out of this, although no doubt they will try.