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The $2000 Cluster Bust


kymera_gr7
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Anyone else call their pharmacy to find out that Migranal (DHE, ergotamine, dihydroergotamine, etc) costs $2k without insurance? Here's the kicker. I have good insurance. Scratch that GREAT insurance through the government. They refuse to cover the stuff.

Do they expect me to get shot a 5th time before they cover my meds? I mean shit I had to fight them just to get Relpax and Zomig covered. And they'll cover all my painkillers and other narcotics without a hitch. But WTF is the deal with triptans and ergotamines? Seriously!

Sorry, just needed a place to gripe  >:( It's 4 days til my wedding, I'm stressed and worn out...

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Its okay man I've just had a reaaaaaaaally bad week. I haven't been on much til now.

I busted a few times with HBWR and was playing around with lithium a week or so ago and was able to make my cluster cycle stop. I'm getting hits and shadows a lot but no full blown attacks (its been raining on and off and lots of weird weather here in TX)

Right now I'm on verapamil 120mg up to 3x a day (as needed) and I'm backing that up with Monster, Red Bull, my usual marijuana doses, and (in case of emergency) my home-made dilaudid-stadol concoction. Plus I have O2.

I really was just griping more than anything.. lol

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Kymera,

Pretty sure I read somwhere that MJ increases CH attacks and frequency?  Might want to look into tapering that down for a while?  Dunno, someone more knowledgeable than I on the subject might chime in here. 

"Earth calling Ricardo....  Ricardo...  Come in please..."  ;)

(maybe Ricardo can shed some light on MJ and CH).

PFW my friend,

Jeff

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If I smoke too much and get really baked on an indica (the more stoney, sleepy, relaxed high) it triggers attacks. If I smoke sativa (the uplifting, cerebral, "heady" kind of buzz) in limited quantities, it works as a great abortive. From what I can tell, everyone is different. BUT I will consider what you said good sir :)

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If I smoke too much and get really baked on an indica (the more stoney, sleepy, relaxed high) it triggers attacks. If I smoke sativa (the uplifting, cerebral, "heady" kind of buzz) in limited quantities, it works as a great abortive.

I have had almost the same experience.  I think the only thing that is different with me is that I wouldn't call it a "great" abortive for myself, although at one point it seemed to be.  It seems to me like the ganja is very particular with people with clusters.  Some people it helps, some it doesn't effect their clusters at all, and some have immediate trigger of their clusters.  Just one more strange aspect of this disorder...

And I'm not going to tell anyone what to do, but I would be damn careful with the home made Dilaudid/Stadol concotion.....(whatever that means)

I know many pharmaceutical company's will give you a discount on meds if your insurance won't cover it, and I know in the Northeast US Stop and Shop grocery stores you can buy generic Imitrex for really damn cheap...But the biggest thing I would encourage you to do is to fight those bastard insurance company's until they give you what you need.  Appeal every denial, get on the phone with them and ask them specifically what is needed to get it covered, then work with your doc to make it happen.

I know insurance company's really love to deny everything, but I find it hard to believe that they will deny you with a diagnosis of cluster headache--these are the meds that are used for it.  Then again, I have at times been unpleasantly surprised with the length that insurance company's will go to save a buck. 

Bastards.  If I was just a wee bit more of an asshole I would wish a cluster on them.

-Ricardo

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Ricardo:

I've heard a lot of the same stuff about cannabis. I was a medical grower in AZ for a bit and I had a buddy plus two other patients that have migraine variants and the like. They told me too that other people said they couldn't smoke because the carbon monoxide would trigger headaches, whereas the four of us seemed to have a lot of luck with some very particular strains, namely Jock Horror, Raspberry Cough, and ATF (my personal favorite :D)

**Note: Forgot about censorship, sorry dudes!

The "Stadol" is actually just a refillable glass nose spray bottle that I put distilled water into then dissolved like 20 of the little 2mg Dilaudid into it. It's my own "homemade" Stadol. Works great, but the rebounds just arent worth using it regularly. Like I said, more of a last line of defense if nothing else works so I can just sleep it all off in a fuzzy narcotic haze. LOL

Yeah, the insurance companies are real shitheads sometimes. They cover some of the dumbest things and fight you on serious stuff. I don't believe they ever gave a damn about a single patient. We're statistics and numbers to them. Even to a lot of doctors as well... Tsk tsk...

Spiny:

Technically I *am* married (me and Rory went to the JOP office to get married) but the actual ceremony before our family and the lord will be St Patty's Day :D

Thank you very very much! :)

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Congrats Kymera on the wedding!

Yeah, DHE is higher than a rat's ass. Have you tried H.E.B pharmacy? If you sign up for their like...$10 drug plan, it's got a lot of good, generic deals. I think that a single vial of D.H.E. was like $45 though... You could call 'em and find out, and get enough to cover you for the wedding.

Ergotamine and DHE/DiHydroErgotamine are a bit different. I think Migranal is the nasal spray of D.H.E.

Good luck getting it all sorted out. D:

Mystina

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Yeah H.E.B is the place that quoted me the price. My insurance decided to cover most of it but its still 180 bucks. I asked about the prescription plans and they wouldn't shave anymore off. :\ Of course this may have something to do with the fact that we are currently engaged in a legal battle with the H.E.B pharmacy and I got the DEA involved on them.

Thanks for the Congrats :)

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