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The English Guy

New, English and Confused .

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Hi All, 

I am an English Guy living in ND (please don't ask it is a long story) , I have only had Cluster Headaches for a couple of years now, mostly in a 6 month cycle starting around April.

I went through what appears to be the usual BS with my then Doctor, stating it was a Sinus infection and "why aren't these antibiotics working?? " , I changed Doctors and thankfully they knew straight away what we were dealing with. So Sumatriptan was prescribed which works well for me, can clear up an episode in about 10 mins, then my Pharmacist found out about Emgality ...  fantastic !

My Doctor was on board, prescribed it immediately, and then guess what , my insurance Blue Cross Blue Shield denied the claim, they also denied refills on the Sumatriptan stating I didn't need more than 6 every 2 weeks, well at 2 episodes a day 6 lasts 3 days not 14 so for 11 days I have zero medication I can take unless I can find $300 for 6 nasal sprays !

BCBS are denying all attempts to get them to pay for the medication, (even though I hit my deductible some months ago), on the basis that it is Migraine medication, and I do not suffer from Migraines !! 

Has anybody else had this issue with their insurance company ? is there a way around it ? 

By denying my claim it just feels like legalized torture, or at the very least a human right violation, surely this has to be illegal ?


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Hey there!

i am new to CH as well and to cluster busters. I’ve found that the people on this forum are super helpful and comforting to newbies like us. Unfortunately, the insurance situation in this country is atrocious. There really isn’t anything you can do about it. Even if the doctor, who has experience and went to school prescribed something they can deny it if they want. I’m sure some of the more experienced members will be chiming in soon regarding their oxygen set ups etc. I’ve been relying solely on the vitamin d regimen. There is a lot of informative information on that thread regarding vitamin d and reduction in clusters. If you go to the first page of general board there is a vitamin d thread. I’d purchase the vitamins as soon as possible and get started. Best of luck


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you can split your injections to extend them, you can find information here and on youtube on how to do that. You will also want to look into getting oxygen at a flow rate of 25lpm and a non rebreather mast, you can also find info on how to get that setup on this site as well. A member on this site has developed the D3 regimen that has helped countless cluster heads. Poke around this site, start bu clicking the blue link at the top of the page for new members. read as much as you can and ask questions and you will get answers. Busting is a big topic that has helped most bring clusters under control. 

Welcome to the site you will be happy you found it.  

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What you need to do is talk to your doctor and see if she\he will code you as chronic migraines.  The CGRP class drugs seem to have better coverage for that diagnosis.  The other option is to talk to HR and see what appeals process s available.  Often BCBS is an administrator for employers and the pharmacy benefits are actually dictated by the employers group.  With persistence you should be able to find out the circumstances the med will be covered (Amovig is an option) and then have you doc massage the diagnosis to get you approved.  Nonsensical, yes - Manipulative, yes - sucky, yes    but in the end you have to play the game even if you dont know the rules.

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Welcome TEG, glad ya found us,

…..yeah...OXYGEN, D3 and perhaps busting.....your goal is to have the suma on hand for the RARE, if any, breakthroughs..... because right now it sounds like way too much of a med that can feel miraculous but has some nasty side effects and can potentiate  rebound hits...

...had the same problem thru 7 different insurance companies  (O2 too)...one being BCBS...the 12/mo they are allowing is pretty standard...best I ever did was 18/mo....there are several strategies that worked for me...in the end, ALWAYS got both....(if Medicare, forget the O2 being covered, do self pay or welding O2)...

...starts with an advocate Dr (s)...mine were with a headache clinic used to dealing with insurance droids...your doc has gotta be on board. You need a letter of "medical necessity" stating what your diagnosis is (codes important) because you and your doc BOTH know you have CH.. and insurance companies "act" or ARE ignorant of CH and will give you the typical baloney of denial since "we don't cover these amounts for migraine patients. No shit! ....but YOU.DON'T.HAVE.MIGRAINE! Next, his/her PRESCRIBED treatment. Hopefully your doc is as pissed as he/she should be that some paper pusher is questioning their professional medical opinion/competence...and making medical decisions w/o having examined you (aka practicing medicine w/o a license). 

...my opinion, constantly reinforced over the years....health ins companies routinely deny claims out of hand...they COUNT on a certain percentage just to give up...DON'T! Treat this like a game you are gonna win. No one likes hassles with insurance.... but it's nowhere near as soul crushing as riding out hits "naked". 

...keep a record of every communication with names, dates, and times...be prepared to quote their own words back at them...especially the stupid and wrong...

...it would be especially helpful (if you get your ins through an employer)....to get HR on your side...better yet, request HR to put you in touch with the broker who sold the company the health insurance policy. This person is incredibly important since THEY are the customer of the ins company and more likely to get some action... you are just an annoyance...

….one strategy my doc employed was to prescribe 2 DIFFERENT triptans at the same time...since one ins Co wouldn't give me enough Imitrex,  she wrote another for Zomig NS (5 mg)...might even have been BCBS...they didn't even blink, approved immediately...tho the 2 scripts were same cost as ONE script of the Imi I needed. Side benefit of that: discovered Zomig worked at least as well, with fewer side effects and longer effective action. IMPORTANT NOTE: never mix triptans...always give at least 24 hrs between different types....

….Imitrex is sometimes available in vial form (ask your pharmacist or check online)...where you draw up the med and inject yourself (I used diabetic needles)...allowed me to get 15 aborts (2 mg ea) out of one script and avoid the hammer of 4-6 mg in the statdoses (which can be dissembled so you can use less...like FunTimes said)...





Edited by jon019

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