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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Insurance
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Message started by his wife on Aug 20th, 2010 at 8:02pm

Title: Insurance
Post by his wife on Aug 20th, 2010 at 8:02pm
First time poster.  My husband has had cluster headaches for 20 yrs.  Start usually by June (or as early as March) end in Sept.  A couple of years were headache-free, the worst years were 5-6 a day.  Currently at 2 a day, major meltdowns in eve (as you all know).  He's on the daily prednisone, verapamil, melatonin, oxygen, imitrex cocktail.  Here's the problem...INSURANCE!  Will only pay for 2 shots to last 15 days.  Have had dr. re-write prescrip, word it differently, doesn't matter.  Pulled a Shirley McClain from "Terms of Endearment" in CVS yesterday crying and felt like screaming "Somebody just give him a shot!!"  The gal looked at me and said yea I get headaches, I have one now...REALLY?!  Do you want to go blow your head off because it's the only thing that would relieve the pain?  My big strong husband has taken the tip of this finger off without batting an eye so I know his pain tolerance.  To watch him on his knees crying, wimpering, and threatening suicide...because the freakin insurance company won't give him a stinkin shot is beyond belief!!  (I know I'm rambling..sorry nobody else understands)  Does anybody know what his dr. needs to write on the prescription to get these more often..or is it that the manufacturer recommended that dosage, so that's all they'll pay for?  Has this been an especially bad year for everybody else too?  He's maxed on the pred (puffed up and feels like crap) & verapamil...oxygen isn't kicking it like it use to (I'm going to watch the imitrex video, affraid I'll screw it up and lose this precious gold, going to have him try the H20 and red bull therapies too)...help please...thank you for reading.  Peace and wellness to all..

Title: Re: Insurance
Post by Linda_Howell on Aug 20th, 2010 at 8:11pm
Check your PM's. 

O.K. you're new,  so look up to the left of the top of the page where it says...Good afternoon "his wife"   you have 1 PM

Linda


Title: Re: Insurance
Post by Ginger S. on Aug 20th, 2010 at 8:57pm
I know all to well what you and your hubby are going through 'hiswife'.  My ins. co is the same way and you are correct it doesn't matter to them how the Doc. writes the script for the shots.  I spent an hour with a CH hit at the pharmacy one time and they didn't understand or give any assistance unless I paid the 210.00 for the shot pack.  It was a horrible experience with people staring at me like I was crazy or some junky.  It was a very upsetting experience, so I can empathize.

After telling my neuro about this experience he wrote an additional script for the nasal imitrex as back up for the shots, in his words "this has worked for some people as a go-around with the ins. co.'s."  Granted they don't work as fast or sometimes as well, but if he gets it in him quickly enough it may help.  Have him speak with his doc regarding the ins. issue and request an additional script for the nasal imitrex. 

Also if your ins. is forcing you to pay for shots (anything over 4/mo.) you may be able to get some help from the makers of imitrex Glaxo-Smith-Kline check this link START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

I don't know if this will help you any more than what Linda mentioned in her pm, but at least you know we understand and are trying to help.

Stay strong and keep your chin up.  [smiley=hug.gif]

Title: Re: Insurance
Post by Guiseppi on Aug 20th, 2010 at 9:06pm
Just confirm HOW he is using the oxygen as that's proven critical in it's level of success.

Pure oxygen, at a high flow rate of at LEAST 15 LPM, using a Non Re Breather Mask, started at the first sign of an attack. Some for whom oxygen totally failed them at 15 LPM, found success at 25 LPM.

A relatively new theory on the board revolves around maintaining your arterial PH at a level which makes you less succeptible to attacks. It goes as follows:

Magnesium, Zinc, Calcium Citrate and Vitamin D, washed down with fresh squeezed lemonade, up to 4X daily. I did it 2-3X a day this last cycle and it had a substantial benefit in number and intensity of my hits. It's cheap, no real side effects to sweat, may be worth a shot.

If he hasn't looked at      clusterbusters.com       it's proven succesful for some when nothing else worked.

Thanks for being the supporter you are, you guys keep us sane and we love you! [smiley=heart.gif]

Joe

Title: Re: Insurance
Post by his wife on Aug 20th, 2010 at 9:55pm
Thank you all for the great advice.  I will do all!!   This website has always been a source of great information, but just joining tonight and your quick and heartfelt responses have touched my heart.  Thank you, I feel like I just made some new friends today...Blessings to you..

Title: Re: Insurance
Post by Art S on Aug 20th, 2010 at 10:08pm
Yea, insurance sucks.  I had to go around mine and pay for stuff myself.  I know not everyone can do it but I only use imitrex as a last resort.  Kinda my backup.  I agree with Joe on the O2.  Many more aborts for the money if used as instructed.  Works for me most of the time. 

You may want to check into getting a script for the 6MG vials that way you get a real syringe if your not afriad to use it.  I only use 1/3rd of that when I need one.  Works, a little slower than a full shot but never fails to knock one out.

Title: Re: Insurance
Post by boski on Aug 20th, 2010 at 11:12pm
Not sure how it works if you have insurance but check.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Also what Art S said use a needle or use the Imitrex tip on
upper left.  6ml Vials and needles is the way to go. No
reuse of needle.  Also I use a 31 Gauge much better than that roofing nail in the auto injector!

Peace,
Boski

Title: Re: Insurance
Post by Ginger S. on Aug 20th, 2010 at 11:17pm

boski wrote on Aug 20th, 2010 at 11:12pm:
Also I use a 31 Gauge much better than that roofing nail in the auto injector!

Peace,
Boski

PERFECT analogy/description!!!   ;D

Title: Re: Insurance
Post by boski on Aug 20th, 2010 at 11:32pm
It's true and they are full of air!  I would get a burning
sensation and turn black and blue after a shot!  After 6 or 7
a day in shorts you look a mess!

;)

Boski

Title: Re: Insurance
Post by Katherinecm on Aug 21st, 2010 at 2:25am
The easiest way of dealing with this is probably to beg for free samples from the neurologist.  I don't even like trex but I can't seem to visit mine without getting a baggie full of it.

The magic word for dealing with insurance is a "letter of medical necessity" from your physician.  That will usually do the trick, as long as it's an insurance policy and not a self-insured plan.

You may want to look into the side effects/safety issues created with constant use of triptans.  High usage is a bit controversial, which you'll discover if your insurance company does approve you.  At that point the pharmacy might refuse to dispense as ordered.  I ran into that a few years ago with a trial of Amerge as a preventative and a few people posted they had to threaten pharmacists with turning them in for practicing medicine without a license.  I was such a wreck at that point I insisted to the pharmacist that potential heart damage was not a big of a threat as the suicide I was likely to commit if I didn't get the pain under control.  It was a tad over dramatic, but it worked. No more fights with the pharmacy.

Title: Re: Insurance
Post by boski on Aug 21st, 2010 at 3:29am
Heart no head - Head no heart? 

Well right now it is the head that's the problem!
When the hearts the problem I hope they have a shot for it!
Because I have over used over and over again, guess I
should be pushing up daisies soon!

Boski

Title: Re: Insurance
Post by Katherinecm on Aug 21st, 2010 at 3:34am
Well, I think it's only a theoretical problem.  I've never heard of anyone actually having heart damage unless they combined trex with other drugs they shouldn't have.

In fact, I seem to remember reading a study on the robbins clinic site that said for a small number of people (something like 50?) who didn't have other severe side effects or rebound headaches, daily triptan use caused no heart issues.  VERY small study but perhaps means it's fine.

Title: Re: Insurance
Post by DennisM1045 on Aug 21st, 2010 at 9:36am
Hi, and welcome home ;)

Great advice above from some of the best here.  You're in good hands now.

Most insurance companies have a process your doctor can go through to get around their limits on Imitrex injections. I have Blue Cross Blue Shield of MA.  They refer to the limitations they impose on the number of shots a month as "Quality Care Dosing".

There is a form you can have your Doctor fill out called a "Quality Care Dosing Override".  Now every Insurance company is going to be different, but this is what BCBS calls it. Here is a link to the BCBSMA form:

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I had My Doctor fill one out and he got me 12 shots a month.  Now for me, this is more than enough.  Now that I'm using 25lpm I only use a handful of shots for an entire cycle.

Good luck...

-Dennis-

Title: Re: Insurance
Post by Bob_Johnson on Aug 21st, 2010 at 11:16am
Dennis' advice is the first step: get the doc to intervene with the insurance company--this is no uncommon and he has the clout to get some changes.

Unless your husand has a preexisting heart problem, there is no concern about frequency of using Imitrex. (If you want medical reports around this question, write me a PM.)
====
Are you using a headache specialist or a general neurologist? The latter too often lack training/experience in complex headache disorders. If you want to consider your options:

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 Login or RegisterEND 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 Login or RegisterEND 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 Login or RegisterEND 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.
========
With the proper medical supervision, the Verap dose can do upwards of 700-900mg.
---
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
======







Title: Re: Insurance
Post by his wife on Aug 21st, 2010 at 4:44pm
Thanks everybody for warm welcome and insurance advice. 

You all certainly know your stuff and are a wealth of information.  When we first started this journey 20+ yrs ago we went to his regular dr., got referred to a few different neuros, went thru the cat scans, mri, and many different diagnosis and meds. (Were even told maybe it's all in his head...yea no $hi* sherlock, it IS all in his head!)  Finally went to the Cleveland Clinic Headache Center and got correct diagnosis.  Since then when his cluster period starts he hits the pred hard then tapers down.  He takes 480mg verapamil a day.  Sometimes this works, sometimes not.  If headaches come back he's suppose to start the high dosage pred again and taper down.  He has the oxygen, which he is now using everynight when they start from about midnight to 4 a.m.  And if it's day one of a refill imitrex..

I did get some good advice from the pharmacist today which is probably pretty obvious...get dr. to write script to fill year round...stockpile. 

Thanks again to all.

Title: Re: Insurance
Post by boski on Aug 21st, 2010 at 5:25pm
Stock pile YES!!!!  We should have mentioned that tooo!

I'm on 600mg Verap
           150mg Topomax
           Imitrex
Sipping 5 HR Energy seems to be helping kill the last few hits

Title: Re: Insurance
Post by Guiseppi on Aug 21st, 2010 at 8:25pm
Yes we should have mentioned that too. I have a 3-6 month supply of prevents and a horde of trex on hand in or out of cycle. Always keep the oxygen on hand too.

Joe

Title: Re: Insurance
Post by Bob P on Aug 22nd, 2010 at 8:05am
I went to my MD once with a list of all the abortives and quantities covered by my insurance.  Told him I wanted a script for 6 Imitrex jabs, 6 trex tabs (get the 100's so you can break them in half and have 12 50"s), 6 Amerge, 6 Maxalt, 6 Zomig, etc.

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