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7 years of ch, didnt have one single week w/o c.h. (Read 4893 times)
newhead1978
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7 years of ch, didnt have one single week w/o c.h.
Apr 12th, 2009 at 12:58am
 
iam really wondering if there is anybody like me. i have these monster headaches since 2002 and have them almost everyday since they started. and they seem like getting worse each day although i was treated by several neurologists. mine are chronic as they say, so i dont have periods of relief without headaches. and unfortunately i live in the u.s. and insurance companies dont cover most of the required medicine. please contact me.
Ed
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #1 - Apr 12th, 2009 at 10:00am
 
I hope that you have consulted neurologists with extensive experience/training in complex headaches. Both our collective experience and medical studies show how often these folks lack needed skills to help.
=====
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box.  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.
========

There are some surgical approaches to chronic which, while not highly effective for many, may be your option to consider.

Could you outline treatments you have tried: med, dose, duration of use, etc.
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #2 - Apr 12th, 2009 at 10:14am
 
newhead1978 wrote on Apr 12th, 2009 at 12:58am:
iam really wondering if there is anybody like me. i have these monster headaches since 2002 and have them almost everyday since they started. and they seem like getting worse each day although i was treated by several neurologists. mine are chronic as they say, so i dont have periods of relief without headaches. and unfortunately i live in the u.s. and insurance companies dont cover most of the required medicine. please contact me.
Ed

Unfortunate that you live in the U.S.?  Move.

          Kinder gentler Potter
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #3 - Apr 12th, 2009 at 10:32am
 
newhead1978 wrote on Apr 12th, 2009 at 12:58am:
unfortunately i live in the u.s. and insurance companies dont cover most of the required medicine. please contact me.
Ed


I'm a little confused here, if you have insurance with a pharmacy rider, it should cover most medications (I'm fairly sure they have to cover non-generic if there is no generic available).  There is a generic depakote and I'm a little surprised that it wasn't automatically substituted (my pharmacy always uses generic unless otherwise specified).  Divalproex Sodium is one name of generic Depakote.
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #4 - Apr 12th, 2009 at 10:44am
 
i know divalproex sodium, i guess it was the pharmacy who didnt know what to give, i think i should ask the doctor again. and mr. potter i made the "unfortunate" comment, because of the insurance companies. i am insured through one of the best universities and my insurance does not allow me buy more than 6 zomig pills a month and does not cover oxygen. recommending me to move was so "kind and gentle" thanks for ur understanding. may god help sufferers who cannot "move".
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #5 - Apr 12th, 2009 at 10:48am
 
thanks bob. i have tried preventive verapamil and topamax treatments, and currently i am on lithium and depakote er. i used all those abortive medicine you guys did, except oxygen (which most insurance companies and even medicare and medicare refrain to cover). i first saw this site a couple of years ago and find it very useful. thank you all who share the pain and reach out.
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #6 - Apr 12th, 2009 at 10:49am
 
newhead1978 wrote on Apr 12th, 2009 at 10:44am:
i know divalproex sodium, i guess it was the pharmacy who didnt know what to give, i think i should ask the doctor again. and mr. potter i made the "unfortunate" comment, because of the insurance companies. i am insured through one of the best universities and my insurance does not allow me buy more than 6 zomig pills a month and does not cover oxygen. recommending me to move was so "kind and gentle" thanks for ur understanding. may god help sufferers who cannot "move".

You damn well better love this country.  Now get educated and get oxygen,  it's cheap and effective.

            Kinder gentler Potter
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #7 - Apr 12th, 2009 at 12:11pm
 
Quote:
iam really wondering if there is anybody like me.


You betcha.  I've been chronic for almost 22 yrs. now, and I am certainly not the only one here.

How can we help you?  There is a lot of information in the links to the left of here.  You got some reading to do, sir.  LOL   but we're here to answer any questions. 

         YOU ARE NOT ALONE ANYMORE.  Smiley

Linda
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #8 - Apr 12th, 2009 at 12:16pm
 
Since you are at a university, you will have no problems getting a copy of this (full) article.

Sadly, the last line defines the knowledge.
=

J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.

Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.

Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.

Publication Types:
Review

PMID: 16362185 [PubMed] 
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #9 - Apr 12th, 2009 at 12:40pm
 
newhead1978 wrote on Apr 12th, 2009 at 10:44am:
does not cover oxygen

newhead1978 wrote on Apr 12th, 2009 at 10:48am:
except oxygen (which most insurance companies and even medicare and medicare refrain to cover)

Ah!!!  Another victim of the insurance companies' flim-flam excuse mill!

Virtually ALL insurance companies DO cover oxygen.  The trick is they make you fight for it.  The fighting may include your doctor writing the prescription in a different way, or your oxygen supplier finding the code (they all work using "codes") that they will accept.  OR, it may just require YOU being the squeaky wheel, that eventually will get oiled.  Call them every day, if that is what it takes.  Ask to speak to the person's supervisor.  Work your way up the ladder of nay sayers.

I talk to a LOT of oxygen users on this site, and virtually EVERY person that has contested the insurance company's refusal, eventually got them to cover it.

While you are jumping through the insurance company's hoops, look into paying for it out of your pocket.  It is fairly cheap, and should not strain your budget too bad.  Some have had good luck in approaching thier oxygen supplier, and explaining to them that you are paying out of pocket, and they may come up with a lower price for you.

But, oxygen is SO safe, cheap, and effective, for most of us, that I hate to see any sufferer missing out on its benefits!

Chuck

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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #10 - Apr 12th, 2009 at 1:17pm
 
I am really confused now.  You posted

newhead1978 wrote on Apr 12th, 2009 at 1:28am:
depakote is around 300 dollars and i need generic of it, please somebody tell me if there is one


And then you posted

newhead1978 wrote on Apr 12th, 2009 at 10:44am:
i know divalproex sodium, i guess it was the pharmacy who didnt know what to give, i think i should ask the doctor again. and mr. potter i made the "unfortunate" comment, because of the insurance companies. i am insured through one of the best universities and my insurance does not allow me buy more than 6 zomig pills a month and does not cover oxygen. recommending me to move was so "kind and gentle" thanks for ur understanding. may god help sufferers who cannot "move".


I'm really surprised that your pharmacy wasn't aware that there is a generic form of Depakote.  It has been out since July, 2008.  Mind if I ask where you live?
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #11 - Apr 12th, 2009 at 2:40pm
 
Quote:
Some have had good luck in approaching thier oxygen supplier, and explaining to them that you are paying out of pocket, and they may come up with a lower price for you.


Yep.  That is exactly what I did.  I pay 10.00 per tank.  THAT is nothing compared to the relief I get from that tank.  The regulator and a good mask shouldn't cost you more than what you said you paid for the Depakote, and of course the reg. and mask is a one-time-only  expense.
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #12 - Apr 12th, 2009 at 10:53pm
 
Please do yourself a huge favor,  and get the O2 as soon as you can,  You wont believe how well it can tame the pain.  No matter how much you have to fight, find a way to get it.
I have tried every drug out there, and none have really worked except Imitrex injections, and you cant go around injecting yourself all day and night.
 
Its amazing that these stupid insurance companies will cover expentsive drugs, but not O2.

Good Luck, and PF days to you
Chris Kiss
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #13 - Apr 13th, 2009 at 3:24am
 
thanks all for the directions, i have read most of the site before becoming  a member. as chuck says my main problem is getting around the insurance system. i think the best for me is to meet the sufferers around st. louis, there is a meeting in july right? i just need to learn the tricks of getting medicine or oxygen i guess.
regards
Ed
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #14 - Apr 13th, 2009 at 11:31am
 
Yep.  July 23rd. through the 26th.

       Here is the page to sign up, make hotel reservations etc.

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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #15 - Apr 13th, 2009 at 11:41am
 
If there is any way you can get to the convention please come! 30 seconds after you get there you'll think you're at a family reunion. It's a wealth of knowledge about CH, no one will tell you take 2 aspirin it's just a headache!!!!! Grin

Really hoping I get to meet you in Saint Louis!!

Joe
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #16 - Apr 15th, 2009 at 6:54am
 
Hi,
I suffer from chronic CH since june 2008 and since then I have every day headache.  After trying several medicines, I take now (since last december) Verapamil and Lithium.  I still have every day headache but the intensity and the frequency decreased for more then 50%.  And there is a great diffence between every day.  The moment you think: is it gone? it is back!  The side effects of this kind of medicines are serious, but now I can function for 60 - 70%.  A friend M.D. said that there is a great difference in the dosage of these medicines and in this the patient has to be his own doctor (under medical control of course).
Take care!
marc
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #17 - Apr 15th, 2009 at 7:52am
 
Welcome to the board Marc! I use lithium as my prevent also. I guess I'm lucky in that I didn't need the verapamil with it, although many on the board have found relief combining the 2. Do you have oxygen yet? Read the "oxygen info" link on the left, complete with pictures to show you how to get set up. I can eliminate an attack in 6-8 minutes breathing pure oxygen. The high percentage of people finding relief from oxygen just BEGS you to give it a try!

Glad you found us, looking forward to getting to know you.

Joe
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #18 - Apr 17th, 2009 at 11:24am
 
Hi Joe!
I tried indeed with oxygen but I find it rather difficult to use.  As I have my hits mostly in day time and seldom at night (unlike most other "colleagues"), I don't have the oxygen immediately with me. Or the hit is over before I reach my oxygen, or I am too late and it doesn't bring relief anymore.
Thanks for the advice!

Do you have special side effects of these meds?  I take 240mg verapamil and 3 x 250mg lithium and I feel not so good!!
regards
marc
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #19 - Apr 17th, 2009 at 8:00pm
 
The verapamil plugged me up and I didn't like the negative effects on my sex life...Mr. Winky wouldn't wake up!! Roll Eyes Now I'm able to get by on just the lithium and haven't had any side effects other then I pee a lot the first 2 weeks and feel a little bit lethargic. Nothing a cup of coffee doesn't eliminate.

Joe
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #20 - May 18th, 2009 at 12:58am
 
thanks marc, yes joe side effects are terrible.
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #21 - May 18th, 2009 at 11:38pm
 
Obtaining A Prescription For Oxygen Therapy and Playing Hardball With Your Medical Insurance Company If They Do Not Cover Oxygen Therapy

If you don’t have a prescription for oxygen therapy, the following course of action has worked for many of us.  See your doctor or neurologist and ask for a prescription for oxygen therapy as an abortive for your cluster headaches.  It is very important that your prescription is written properly.   Depending on your medical insurance coverage, your physician may need to complete a Certificate of Medical Necessity (CMN).  The title of is form is “Certificate of Medical Necessity CMS-484 — OXYGEN”.  If it’s required, this documents needs to be signed by your physician.

Many of the private medical insurance companies, Medicare, and Medicaid use existing coverage rules for oxygen therapy developed by the Centers for Medicare and Medicaid Services (CMS), an agency of the Department of Health & Human Services (HHS).   These rules treat prescriptions for home oxygen therapy as durable medical equipment.  Many of these rules also consider oxygen therapy as a supplement for COPD type disorders… Not Cluster Headaches.  

Most private insurance companies recognize cluster headache and the use of oxygen therapy as a valid abortive, others assume the home oxygen and equipment will be used as an oxygen supplement to treat COPD and not as a therapeutic abortive for the pain of cluster headache attacks.   Medicare will not cover oxygen therapy for cluster headaches! (This CMS policy is screwed up as Hogan’s Goat and we’re working on getting it modified to allow oxygen therapy for the treatment of senior citizens on Medicare who suffer from cluster headaches, but it’s going to take a while.)

Complying with the requirement for oxygen saturation testing will prove fruitless if you only have cluster headaches and no other respiratory or circulatory disorders as any tests of your oxygen levels done by arterial blood gas or oximetry will result in normal readings.  If your medical insurance company follow the CMS rules, that could be grounds for them refuse to cover your claims for oxygen therapy.  Accordingly it is very important that your physician’s diagnosis is clearly stated as “cluster headaches” as this will alleviate the requirement for oxygen saturation testing.

These rules require a prescription for oxygen therapy and a physician's certification of medical necessity.  A physician's certification of medical necessity for cluster headache sufferers who need oxygen therapy must include the ICD-9 Diagnosis Codes for Episodic or Chronic Cluster Headaches and estimated length of need in months.  Figure 1 illustrates part of a sample CMS-484 with entries for the following ICD-9 Diagnosis codes and suggested length of need for each:

339.01 – Episodic cluster headache Est. Length of Need – 12 months  
339.02 – Chronic cluster headache - Est. Length of Need – 99 months

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Figure 1.  CMS 484-Oxygen Diagnosis Codes (ICD-9) for Episodic or Chronic Cluster Headaches


It is also important that your physician provides a narrative description of the type of Oxygen DME to be used in your prescription if required.  This is because Section C of the CMS-484 – Oxygen form will be completed by the home oxygen supplier.  If your physician fails to specify the type of oxygen DME you need, the home oxygen supplier will describe the equipment they want to offer and that may not be what you want or need.

The suggested narrative description your physician should use in your prescription to describe the oxygen equipment you will use follows:

1.      Stationary Compressed Oxygen Cylinders for Home Use – Aluminum M or M60 size cylinders with cylinder cart preferred.  (Minimum Qty 3 if you have at least three cluster headache attacks a day/24 hrs.)

2.      0-15 Liter/Minute regulator for use with M or M60 size oxygen cylinders - Single Stage Flowmeter type regulator preferred

3.      Portable gaseous oxygen system - E-size Portable cylinder with cart for Work and/or Local Travel. (Minimum Qty Cylinders - 2)

4.      0-15 Liter/minute Click Style Oxygen Regulator for use with E-size Portable Oxygen cylinders.

5.      Non-Rebreathing Oxygen Mask (Qty 2).


Notes:
1.      If you’re having 3 attacks a day/24 hours you’ll need a minimum of 4 of the M-size Aluminum or 3 of the Steel/Cast Iron Oxygen Cylinders to last one month.

2.      The flowmeter type regulator is capable of flow rates well above 15 liters/minute

3.      Keep track of your oxygen usage over the first two weeks and re-order oxygen refills accordingly

4.      Humidifiers are not recommended with flow rates above 25 liters/minute but they will work at flow rates of 25 liters/minute and below.

5.      If you are a Do-It-Yourself type or mechanically inclined, there are Transfill Adapters available to refill the E-size cylinders.


In order to avoid needless delays and ensure your claims for insurance coverage are approved so most home care oxygen providers will honor the prescription for oxygen therapy, it’s very important that when you see your doctor or neurologist about a prescription for oxygen therapy that it is written to comply with existing rules stated in the Medicare Carriers Manual, Part 3, §4105.5 shown below.

“A prescription written by the patient's attending physician who has recently examined the patient (normally within a month of the start of therapy) and must specify:

•      A diagnosis of the disease requiring home use of oxygen –
       “Cluster Headache”;
•      The oxygen flow rate – “15 liters/minute”; and
•      An estimate of the frequency, duration of use (e.g., 15 liters per
       minute, 20 minutes per hour, 12 hours per day), and duration of  
       need (e.g., 6 months or lifetime).”

As you can see, it is also imperative that the prescription specifically states “cluster headaches” as the medical condition being treated.  Without this statement, you’re in for a heap of trouble.

Your prescription for oxygen therapy should look like the following if you’re getting your first prescription for oxygen therapy, or if you’re already using oxygen therapy and want to get a higher flow rate:

"Oxygen therapy with a non-rebreathing mask as an abortive for cluster headache pain.  Administer at onset of attacks at 12-15 liters per minute for up to 20 minutes per hour, up to 12 times per day. ”


Notes:

1.      Most prescriptions for oxygen therapy must be renewed every year.  Play it safe and have your physician add “Refills for one year” to the above prescription.

2.      Pulse oximetry and arterial blood oxygen are not required for approval of home oxygen for cluster headaches, but you may need a certificate of medical necessity (CMN) signed by your doctor.

3.      Have your physician specify M-size oxygen cylinders for home use and E-size portable oxygen cylinders for work and local travel.  These two types of oxygen cylinders require different types of oxygen regulators.

4.      Obtain a paper copy of this prescription for your records.  It will come in handy if you go on travel and need to order oxygen when you’re away from home.  If you don’t had a copy of the prescription, the monthly receipt from your home oxygen supplier will also work while you’re on travel as it provides proof you have a current prescription for oxygen.

5.      The prescription is written for a maximum flow rate of 15 liters/minute because that is the highest flow rate supported by clinical studies that medical insurance companies will cover.  Accordingly, that is the maximum flow rate most doctors and neurologists will prescribe.


Although you will need a higher flow rate, 15 liters/minute is far better than nothing and it will get you started.  Having said that, don’t be afraid to ask your doctor or neurologist about writing the prescription for 25 liters/minute insisting that this flow rate is perfectly safe and far more effective.  There’s a good reason to do this…

If your doctor or neurologist is willing to discuss higher flow rates with you, but is still understandably hesitant to prescribe a flow rate of 25 liters/minute, ask for the prescription to be written for a demand valve.  Prescribing a demand valve to administer your oxygen therapy alleviates the physician’s requirement to specify an oxygen flow rate.  If this line of reasoning works with your doctor or neurologist, your prescription for oxygen therapy with a demand valve should look like the following:

"Oxygen therapy administered with a demand valve equipped with a facemask or mouthpiece as an abortive for cluster headache pain.  Administer at onset of attacks at normal respiration rates for up to 20 minutes per hour, up to 12 times per day."


Notes:

1.      Most prescriptions for oxygen therapy must be renewed every year.  Play it safe and have your physician add “Refills as needed for one year” to the above prescription.

2.      Pulse oximetry and arterial blood oxygen are not required for approval of home oxygen for cluster headaches.

3.      Have your physician specify M-size oxygen cylinders for home use and E-size oxygen cylinders for work and local travel.

4.      Obtain a paper copy of this prescription for your records.  It will come in handy if you go on travel and need to order oxygen when you’re away from home.  If you don’t had a copy of the prescription, the monthly receipt from your home oxygen supplier will also work while you’re on travel as it provides proof you have a current prescription for oxygen.

5.      Demand Valve systems are expensive.   A complete system can run from $500 to $700 depending on the components and shipping costs, but it may be possible to have some or most of this cost covered as durable medical equipment by medical insurance depending on the type of insurance you hold.


Most physicians will want to see you more frequently than once a year to review the efficacy of prescribed treatments, so if oxygen therapy is working well for you remember to call your doctor before the year is up to have the Rx renewed.  In most cases your physician can do this electronically or by fax to your home oxygen provider without need for an appointment.

Durable Medical Equipment All components of your oxygen therapy system are considered durable medical equipment including oxygen supplies.  The prescription needs to specify the type of oxygen breathing equipment to be used.  The recommended prescription above already states “non-rebreathing mask” to avoid being sent a nose cannula that is useless for at higher oxygen flow rates needed for cluster headaches. The available oxygen delivery systems are available as gaseous oxygen (GOX), liquid oxygen (LOX), and oxygen concentrators.

Ask your doctor or neurologist to specify GOX in your prescription.  It’s normally delivered for home use in large oxygen cylinders (M60, M, H, and K-sizes in the US) and the smaller portable oxygen cylinders such as the E-size for local travel and work.  It is completely permissible for your physician to specify the size oxygen cylinders as part of your prescription.  The following diagnostic and treatment codes will come in handy as most medical insurance companies require them:

Diagnostic and Treatment Codes

 Diagnostic Codes

  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

The following codes for treatment and procedures are applicable to most private medical insurance guidelines are included below for informational purposes.  Inclusion or exclusion of a procedure, diagnosis or device code(s) does not constitute or imply member coverage or provider reimbursement policy.  Refer to your medical insurance contract benefits in effect at the time of service to determine coverage or non-coverage of these services as it applies to an individual member. If your medical insurance does not provide coverage for home oxygen to treat your cluster headaches...  Plan on playing "hard ball" with them to get it.

    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)

The advantage of using GOX comes into play when you want to use regulators capable of higher flow rates than the 15 liters/minute that most home oxygen services have on hand.  There are several constant flow regulators that deliver up to a flow rate of 25 liters/minute and a few that go higher.   Demand valves are similar to a SCUBA regulator and very easy to use.  They deliver oxygen on demand as soon as you start to inhale. The harder you inhale, the more oxygen they deliver.  As there’s no flow meter on a demand valve, you control the oxygen dosage with your respiration rate and this may make it easier for your physician.

GOX is usually the most cost effective in terms of cost/abort if you use the larger home size cylinders.   If you’re having more than three attacks a day/24 hours, order at least two M-size cylinders and at least a three-day supply of the E-size.  The average abort will consume from 125 to 200 liters (average volume 160 liters) of oxygen so an E-size oxygen cylinder that holds 700 liters of oxygen will be good for 3 to 4 aborts.  The M-size oxygen cylinder holds 3995 liters so should be good for 20 to 25 aborts.  Once you’ve established a usage rate, you can order refills accordingly.  It’s no fun running out of oxygen on a Friday evening, as most home medical providers don’t deliver on weekends so plan ahead.

Liquid oxygen (LOX) systems are normally delivered in a large reservoir holding 20 to 40 liters of LOX along with a smaller portable 1-liter dispenser.  LOX expands at a ratio of 860:1 so a 1-liter dispenser will deliver up to 860 liters of gaseous oxygen capable of 4 to 5 aborts. Home LOX system can only deliver a little over 15 liters/minute without freezing up.

Oxygen concentrators are basically useless if you want a flow rate greater than 15 liters/minute that supports hyperventilation to abort cluster headache attacks, as only a few models are capable of 15 liters/minute and none go to 25 liters/minute.

LOX systems and oxygen concentrators will work in a pinch if GOX is not available.  Again, oxygen therapy at 15 liters/minute is better than nothing.  

As a side note, you can always use a clean 40-gallon Hefty trash bag for a reservoir bag.  Fold and seal the open end with duck tape then cut a small piece off the corner on the closed end and tape it to the non-rebreathing mask manifold.  Once you’ve done this, fill the hefty bag completely from the LOX dispenser or concentrator, then breathe at a respiration rate as fast as needed to hyperventilate.  This works best if you use the “T” manifold from the O2PTIMASK as you can put a cork in either end after filling the Hefty reservoir bag ahead of time.   You might want hang the filled bag out a window or on the back porch as a safety consideration.

You also need to be aware that some home medical oxygen suppliers will try to pressure you into accepting LOX or an oxygen concentrator system even though the Rx may specify GOX.  They try this because they can charge your insurance company more each month for LOX or an oxygen concentrator than they could with GOX cylinders.  If they try to pull this stunt on you, just tell them “No Thanks.  It is against the law for a home oxygen supplier to change a physician’s prescription…  If you can’t fill my prescription as written, I’m taking my prescription and order for oxygen to another supplier.”    

Dollars and Sense of Oxygen Therapy

It’s always wise to shop around for your home oxygen service to see who has the best rates even if your insurance company is covering most if not all of the expense.  You may need to pay a percentage of the total monthly cost as “Co-Pay” so getting the best rates on refills and equipment rental is important.  You can save a considerable amount each year if you buy or have your insurance company buy the oxygen regulator, demand valve if you use one, and the caddy cart for the E-size cylinders if you use them.  Medicare and the medical insurance companies consider these items “Durable Medical Equipment”(DME), and some medical insurance companies have provisions for coverage if you want to buy this equipment instead of renting.  

The cost of your oxygen consumable (refills) is directly dependent on the size oxygen cylinder you use.  The average cost of a refill for the E-size cylinder containing 708 liters of oxygen is $20 and it’s $30 for an M-size cylinder containing 3995 liters of oxygen.  As indicated earlier, we consume on average, 160 liters/abort if using a flow rate that supports hyperventilation.  That works out to a cost/abort using an E-size cylinder of $5, and if you used an M-size cylinder the cost/abort is $1.20.  

At an average of 4 cluster headache attacks a day, a chronic cluster headache sufferer consumes $1,752 worth of oxygen a year if using M-size cylinders and $7,300 a year if using E-size cylinders.  That works out to a savings of $5,548 if you switch from E-size cylinders to M-size cylinders. Obviously that isn’t always possible for folks that need portable oxygen at work or who do a lot of local travel.  It is a great selling point to your insurance company if you want them to buy you a demand valve.  Remember, if you’re 65 or older, on Medicare and have a Medigap Policy —(Medicare Supplement Insurance sold by private insurance companies to fill “gaps” in Original Medicare Coverage), you will still likely pay 20% of your oxygen refill expense..

Medicare and Medicaid Coverage for Oxygen Supplies and DME

The monthly rental payments to the supplier cover not only your oxygen equipment, but also any supplies and accessories such as tubing non-rebreathing mask, or a mouthpiece, oxygen contents, maintenance, servicing and repairs.  As a medical insurance, Medicare pays 80% of the rental amount, and the person with Medicare is responsible for any unpaid Part B deductible, and the remaining 20% of the rental amount.

If you want to buy your own regulator you can do so and save on rental expenses, but Medicare will not reimburse you for the lump sum purchase of oxygen DME. The most recent CMS rules for oxygen equipment indicate Medicare will only pay for DME on a rental basis up to a 36-month rental period per the latest legislation effective 1 January 2009.  Under the new law, the rental payments will end after 36 months, but the supplier continues to own the equipment. The new law then
requires your supplier to provide the oxygen equipment and related supplies for 2 additional years (5 years total), as long as oxygen is still medically necessary.

At the end of the 5-year period, your supplier’s obligation to continue furnishing your oxygen and oxygen equipment ends, and you may elect to obtain replacement equipment from any supplier. A new 36-month payment period and 5-year supplier obligation period start once the old 5-year period ends and the new oxygen and oxygen equipment you require is furnished.

Playing Hard Ball When Calling Your Medical Insurance Company

The following is a modified version of an article from a 2007 OUCH Newsletter

1. Record your conversation with them. Be upfront with them that they are being recorded. Be sure to have your policy in front of you, and know it. They may quote clauses in it that do not exist. If they quote from it let them know it is in front of you and ask exactly where in the policy they are quoting.

2. Ask for names when talking to representatives, both first and last. The insurance companies may make statements that turn out not to be true when they deny you your oxygen therapy. In my opinion this is their Achilles’ heel.  In my experience they do not want to give their full names out, if they don’t give you their name ask for their supervisor, or their supervisor’s supervisor.

3. One of the first statements that they may make is to site the Medicare coverage rule that does not cover oxygen therapy for cluster headaches and that insurance companies are allowed to use this rule.  Unless you are on Medicare and have no secondary medical insurance, this rule does not apply to you.

4. They may also tell you that hyperbaric oxygen therapy is not covered.  While this is true, your doctor has prescribed normobaric oxygen therapy at one atmosphere barometric pressure and that is covered.  If they quote from the FDA Legend they are making the implication that limiting oxygen therapy it is a federal regulation. This is not the case; this is where asking for the representative’s name is important. Would you want to be on the record quoting non-existing federal regulations to deny someone a lawfully prescribed medication?

5. Have your policy/plan booklet in front of you when you call. If they tell you the limits are in your policy, tell them you have it in front of you, and ask them exactly where it is.

6. By changing or failing to honor your attending physician's orders as expressed in the prescription he/she wrote, they are practicing medicine without a license. When they tell you they have a review panel that includes a physician, the physician on their panel is committing malpractice since he's changing your attending physician's orders as expressed in the prescription when he's never examined you. Ask for that physicians name and credentials, and request to speak to him directly.

7. Another common mistake made by the insurance companies is that they are treating you as a COPD sufferer.  You may have to point out several times that you do not suffer from COPD and your blood oxygen levels are fine, but you do suffer from cluster headaches. Treating them as one and the same is a medical mistake.

9.  Remember that you are your own best advocate.  Be assertive yet polite. When given an untrue statement, tell them that it is untrue and ask from whom they are quoting and ask to speak to that person directly.  Ask them if they are sure they want to be on the record quoting that statement.  Remind them that the monthly cost of coverage for triptan injections runs from $680 to $2550 and that a month’s supply (4 M-size Oxygen cylinders) costs less than $160.  Also remind them of the cost of an ER visit, mention to them that you would have no choice but to go to the ER for the attacks.  

10. If you are still not getting any satisfaction, ask for the form and web link containing the procedures for challenge a coverage limitation.  They are required by law to provide you with this information.  Also ask for the phone number for the National Association of Insurance Commissioners covering your insurance company.  You can find this at the following link if they can’t come up with a number:

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Review

1.      Oxygen flow rates of 15 liters/minute and below will take longer to affect a cluster headache abort and may not be effective at higher Kip-levels.

2.      Oxygen flows rates of 25 liters/minute and above support hyperventilation, and are very effective in aborting cluster headaches with more rapid aborts.

3.      High flow rate oxygen therapy is very safe with no real or lasting side effects.   That’s more than you can say for any of the preventative, transitional, or abortive medications for cluster headaches

4.      Talk with your doctor or neurologist and to make sure your prescription for oxygen therapy is written properly to prevent problems with medical insurance or Medicaid coverage.  Use the samples below in Figure 2.

5.      If your doctor or neurologist is unwilling to write your oxygen therapy prescription for 25 liters/minute, ask for a demand valve.

6.      If your doctor will only prescribe your oxygen therapy at 15 liters/minute and won’t prescribe a demand valve, plan on buying your own oxygen regulator.  You can purchase them over the Internet without a prescription.

7.      If you get the prescription, but your insurance company refuses coverage to pay for home oxygen… Play Hard Ball!

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Figure 2. Sample Oxygen Therapy Prescriptions


Download and print the following links for your doctor or neurologist when you ask for a prescription for oxygen therapy:

Standards of Care and Sample Prescriptions for Cluster Headache
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Home Oxygen Therapy Insurance Guideline #: CG-DME-18
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CMS-484-Oxygen
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If you still have problems or questions, please shoot me a PM.

Take care,

V/R, Batch

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« Last Edit: May 19th, 2009 at 7:11am by Batch »  

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TedtheBear
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #22 - May 18th, 2009 at 11:59pm
 
maro56 wrote on Apr 17th, 2009 at 11:24am:
Hi Joe!
I tried indeed with oxygen but I find it rather difficult to use.  As I have my hits mostly in day time and seldom at night (unlike most other "colleagues"), I don't have the oxygen immediately with me. Or the hit is over before I reach my oxygen, or I am too late and it doesn't bring relief anymore.

marc

I too get hit up during the day! Rarely do I get hit at night. I take my E tank with me wherever I go (including the work place). Why can't you have it with you when you need it?
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jon019
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Re: 7 years of ch, didnt have one single week w/o c.h.
Reply #23 - May 19th, 2009 at 12:23am
 
Batch...I am speechless...

Smiley Smiley Smiley Smiley Smiley Smiley Smiley Smiley

Best,

Jon
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