Hello fellow Clusterheads. Over 3 years in remission and the beast has returned and he missed me. I've been suffering from this agony for over 35 years and this has been the worst cycle I've ever experienced. Thought I would have out grown this at 60 years old but noooo.
Anyway, my headache center I was going to closed, so I made an appointment with another center and they told me I could be seen in November. NOVEMBER!!! 3 months away. Unacceptable. Made an appointment with my primary and asked for O2, Sumatriptan pills and injections. I rely on the pills because they're convenient and use the injection as last resort. Problem is the insurance company only gave me 9 pills.9 PILLS FOR THE MONTH!!!!WTF!!! I had to pay full price for 9 more pills. The last cycle I was given at least 30.
My question to you all is has anyone gone through this nonsense? This is criminal and totally unacceptable.
As all you suffers know, we're desperate when it comes to our pain management during an episode and if I have to pay full price, my hands are tied. Any input is appreciated. Stay pain free my friends. Peace.

Yes, all of us have went through this. CH is so rare, most Dr,s no little about it. We have to learn ourselves. Read on this site to find what are helpful treatments.

The best are high flow O2 and D3. Imitrex and DHE are other aborts. You must become smarter than your Doctor, believe me.

Most all of the medications we CHers use for relief are migraine-related drugs, and coverages are based on what migraine sufferers use, not CH.  When I was in the throes of CH my insurance would only cover 4 Zomig nasal sprays/month with a co-pay of $30/dose.  In 2014 I used more than 300 with an out-of-pocket cost of over $15k.

You can try to beat the system by asking your doc to press hard on the insurance company.  He will need to file a statement of medical necessity with the insurer, and follow up directly.  And he should go beyond normal "docspeak" and talk about agonizing pain and potential life-threatening outcomes.  I had one doc who did this and got my coverage increased to 8 doses a month.  Not a success, but a minor victory at least.  Pharmacists can also help by giving out extra discount cards and samples, so best to stay with a single pharmacy so they come to know you.  Good luck.  Its a struggle for sure but don't give up yet

9 pills a month under insurance, I know that's the norm in the US, but here in OZ, we have no insurance that covers medication, so we get them subsidised under the PBS, and 4x50mg Imitrex/Imigran pills will cost you $46.00, but now, thanks to Batch, and the vitaminD3 regiment, I don't have to worry about that any more! Because I've been CH free for the past 9yrs. So, if you haven't already tried, it's well worth giving it a go.

Cheers Hoppy

You can try a high doe of verapamil and later taper off. It worked for me.