I'm probably lucky in that my cluster cycles occure only for a month and with about 3 years between each cycle.

My insurance only covers 27 pills/month, which I can go through in about a week!  

BC/BS has denied my request for more pills despite my drs. approval - they want me on a preventive med which I don't want.

I'm thinking of legal action - has anyone encountered similar issues with Insurance overridding physician's orders???

I hate to tell you, but it doesn't matter what you want. 27 doses in one month is far more generous than most insurance companies. Besides, hasn't your doc told you you're only supposed to take two of those in a 24-hour period.

Why all the resistance to a preventative? Daily ingestion of twice the recommended dosage of sumatriptan is far riskier.

Please consider a preventative.      I would much rather keep the beast at bay than fight him every day.  Just a thought!

Jeannie

27 doses a month is far more than I have ever heard anyone's insurance giving them.  I think the drug manufacturer specifically says do not go over 2 doses in a week.  Averaging 1 a day, every day, seems like begging for trouble.

It seems like the insurance company has been fair with you.  It is their responsibility to pay for your medical care, just like it is your responsibility to take care of yourself.  In this instance, taking care of yourself means taking action to try to prevent the headaches in the first place.  

Think if you had a different affliction, such as diabetes.  You can't refuse to take meds and then expect the insurance company to pay for ER visits and ambulance rides every other day.  

Thats just my opinion.  It seems fair.

Russ,
I am surprised you and your doc are even choosing to use the pills.  For a majority us, the pills take too long for the body to metabolize to a therapeutic level for abortive measures.  Have you tried other routes such as nasal sprays or SC injections?  Triptan drugs should only be used for abortive measures.  Althought your insurance company might be practicing medicine w/o a license, they do have a good point with the need for a preventative.  But then it is really up to you on which beast you choose to fight...

As far as fighting your insurace, there is some good info on the OUCH website on how to approach them.

The pills take too long to work, but if you try to get the injections, or nasal spray, your insurance will pay for even fewer doses of those.

Have you tried O2 as an abortive? It's one of the best there is, and your insurance should pay for that. That way, you won't need all the trex. Trex, in any form, can and does cause rebound headaches.

Verapamil is a first line prevent, and it works for a lot of people. And it's inexpensive.

You can appeal the decision with your insurance company, and have your doc write a letter of need, but getting on a prevent is a good choice. And get O2, it works great... much faster than the pills, and no side effects.

Hmm..

PDRHealth.com lists the following dosage limits for imitrex.

"Imitrex should be taken as soon as your symptoms appear, but may be used at any time during an attack. It is available in three forms: injection, tablets, and nasal spray.

Imitrex injection is administered just below the skin with an autoinjector (self-injection device). Choose a site where the skin is thick enough to take the full length of the needle (1/4 inch). Avoid injecting Imitrex into a muscle or a vein. Your doctor should instruct you on how to use the autoinjector and how to dispose of the empty syringes. You should also read the instruction pamphlet that comes with the medication.

You can take a second injection if your headache returns; however, never take more than 2 injections within 24 hours, and be sure to wait 1 hour between doses.

Imitrex tablets should be swallowed whole, with liquid. If you have had no relief 2 hours after taking Imitrex Tablets, you may take a second dose of up to 100 milligrams, if your doctor advises it. If the headache returns, you may take additional doses at intervals of at least 2 hours. You should not take more than 300 milligrams in one day. If your headache returns after you have had an Imitrex Injection, you may take single Imitrex Tablets, at intervals of at least 2 hours, up to a maximum of 200 milligrams in a day.

Imitrex nasal spray is packaged in single-dose bottles containing either 5 or 20 milligrams of the drug. The usual dosage is a single spray in one nostril. If the headache returns, you may repeat the dose once after 2 hours. Do not take more than 40 milligrams a day."

If your insurance company sets a limit of 27 imitrex pills/month but not the pill size, I would go for the largest size 50 or 100 mg tablets and get a pill splitter. 25 mg of imitrex worked fine 8 times a day for me.  200 mg a day of the imitrex tablets is a load.  You WILL FEEL IT!

The best suggestion is oxygen therapy.  

Take care, Batch

First off, your insurance company probably isn't denying you the right to fully fill the script.  Most likely, they are limiting the amount they will pay for.  You have the option to pay out of pocket for anything in excess of what the insurance company will authorize.  Check your policy and your insurance company's drug formulary. It should tell you what they will pay for, in what quantities and whether there are pre-authorization requirements.  There should also be a procedure outlined for you to appeal their decision.  When you submit the appeal, have your doctor write a letter of medical necessity explaining why you need in excess of what they will give you.

Here are links to an article Matt Matlock wrote for the OUCH Newsletter back in June 2007 about getting around insurance limitations.

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Secondly, Oxygen should at least be tried as a first line abortive before depending on triptans.  It is cheaper, has fewer side effects and can be used more often than any of the other abortive medications without the risks.  Used properly, it can abort an attack as quickly as the triptans for some people.

Well, I use the 50mg pills, and for that I can have up to 200mg/day, which has not been a problem.

And, like I said, I'm grateful that my cycles are not long and the Imitrex has always helped because I carry them with me when I'm in a cycle and take them the moment I feel one coming on.

I do not like taking any meds unless I have to, and taking something everyday for the rest of my life is not an alternative.  It's a blanket approach, not an individualistic approach.  Plus, I'm pretty sure those alternatives have risks to my liver, kidneys, heart, lung and just about every other major organ.

I do appreaciate ALL the advice though! Esp. the info on OUCH!

Russ wrote on Jun 3^rd, 2008 at 3:14pm:

I do not like taking any meds unless I have to, and taking something everyday for the rest of my life is not an alternative.  It's a blanket approach, not an individualistic approach.

This is like saying, "I don't want to use my gun unless I have to, but these intruders come into my house every day, multiple times per day, for a month at a time. But I'm not going to put locks on my doors because of the risk to my doorframes, not to mention the risk I take injuring myself when I install them. I will shoot each and every intruder as they enter my home."

Russ, you don't need to take preventative drugs every day for the rest of your life, especially when your cycles only last a month. You just take them leading into your cycle and maintain them for the duration of the cycle itself. In my humble opinion, the side effects and long-term risk of preventatives are far less than swallowing triptans multiple times per day for a month.

Your mileage may vary. Have a nice day.

Preventative!!!

It will seriously reduce your pain level and like Brew said, if your episodic, you only take it while in cycle.

Also, Imitrex pills are for migraines - they take too long for CH.

What about O2? I try that before Imitrex.

Russ wrote on Jun 3^rd, 2008 at 3:14pm:

I do not like taking any meds unless I have to, and taking something everyday for the rest of my life is not an alternative.  It's a blanket approach, not an individualistic approach.  Plus, I'm pretty sure those alternatives have risks to my liver, kidneys, heart, lung and just about every other major organ.

Russ, I can appreciate your thinking on not wanting to take meds. However, having CH forces us to really consider that way of thinking.

Your cycles are very short and you have a pretty lengthy time between them, and taking a prevent for about 6 weeks, and an abortive for the time you are in cycle is probably not enough to harm your internal organs. It's your choice to deal with this horrific pain med-free, but as you know, it's not easy. The meds we take to stop this pain are necessary for most of us, we couldn't deal with it without them.

I'm curious, how long does it take for a hit to come on? I've taken trex in pill form for migraine, and it takes at least 30 minutes to kick in. If I tried that for CH, I'd be banging my head on the nearest hard object within 5 minutes. CH comes on so fast, I don't see how the pills can help. Could it be that your hits have a short life too?