Hi there, folks.  I am a returnee, but couldn't remember my login info, so I set up a new account. I met several of you at the convention in Atlanta in 2010, around the time of my last major episode, which lasted 8 weeks.  I've had a few minor cluster episodes since then, but feel it in my gut that a doozy might be starting.  I've had chronic migraines and was diagnosed with cluster headaches in 2010. With some historic backtracking with my doctor we figured that I get a bad episode every 5 or 6 years, usually in the summer.  I'm lucky enough to live in Durham, NC and have been seeing "my" neurologist for a few years for the migraines, which have become more frequent and less responsive to triptans. Last week I started having multiple bad cluster-like headaches every day and have an appointment next week with the neurologist.  They haven't settled into a clear pattern, but I'm sure some of them are/were clusters and starting to show up "on time" every day. I'm hopeful, with her help, we can nip this potential episode in the bud and get some oxygen on hand.  My current preventatives for migraines are Verapamil 480 mg (good preventative for clusters, too), Zonisamide, 200 mg, and Trazadone 150 mg at night.  Abortives: triptans work okay with ones that I catch early -- I have prescriptions for sumitriptan 100 mg tablets, Rizatriptan 10 mg tablets, and Zomig nasal spray. (Fortunately, I have good insurance).  Additionally, as needed, Tizanidine, A muscle relaxant (4mg) to knock me off my ass into sleep, and Ketorolac in combination with Promethazine. I'm not taking all of this at once, of course, but I'm glad that my neurologist is aggressive.  I had my first round of botox a little over a month ago for migraines and it doesn't seem to be helping, but I'm told that it might take a few treatments.  In my desperate 7-day non-stop series of what I'm calling a combination of migraines and clusters (distinct symptoms of which I'm aware), my doc gave me 20 pills of Quietiapine last week. Not since Topomax have I felt like such a zombie. I haven't read all of the new threads yet.  Are there new drugs to look into? (Of course, Magnesium, Vitamin B2, D every day.)

With my pharmaceutical array described, the migraines have gotten worse and more frequent and, as I mentioned, I'm seeing some beginnings of a cluster episode.  I'm apprehensive, but feel well informed with a good neurologist and a VERY comprehensive history and tracking of my treatments. Of note, I tried clusterbuster methodology a few years ago, but it didn't seem to work for me.  I've made it clear with my neurologist that I don't want narcotics.

That being said, as I get older (53 now), I'm noticing that the headaches and/or the drugs (some of which are off-label anti-seizure and drugs for schizophrenia) over the past years are noticeably affecting my focus/concentration and other cognitive issues.  I'm on intermittent FMLA for the migraines, but my supervisors are expressing concern/irritation about my ability to do my job effectively (I read and edit research agreements).  Not having the headache days away from the office "count" as unexcused absences has no bearing or protection for work performance. Medium headache + stress = big headache. I practice mindful meditation and eat the best food that I can afford.  Headaches are a way of life (as they are for all of you).

This leads up to... As much as I would hate to not be able to do my job, has there been any headway lately in people with chronic clusters and/or migraines successfully getting disability? My workplace has long term disability insurance.  I'm trying to get my supervisors, with my doctor's help, to work out flex schedule.  Management is not budging (and being assholes about it).  My heart goes out almost every day to you chronic cluster sufferers and wonder how you survive.  I've used up all of my sick leave and I'm feeling very uncertain about my job situation in the near future -- I've been doing this work for 20 years.

So, there's my sharing and thoughts for the evening.

Jim

Hi, and welcome, although I'm sorry you had to find your way back here. Sumatriptan tablets can take 30 - 45 minutes to get in to your system so are not really much good as an abortive. However, the auto injections are fantastic and will abort a really bad one in less than 10 minutes for most people. Easy to carry around so you can take them to work. Oxygen at a minimum of 15 litres per minute with a non-rebreather mask is also extremely good if you catch the CH early.I use the oxygen when I'm at home and save the injections for when I'm out. Also check out the vitamin D3 regimen which has had amazing results for many of us.

Great article.  Have any of you folks done the in-hospital IV DHE treatments?   I'm surprised to see botulinum toxin as a prophylactic therapy, especially at 50 units as Table 2 suggests.  Perhaps it is a coincidence, but the frequency and severity of my migraine seem to have increased since my first round of botox. No cluster pattern has developed yet for me, though over the past couple of weeks I've woken up several times with very clear (and excruciating) CH symptoms.  Neurology appointment early next week.  Via phone with my doctor yesterday, I got prescriptions for both injectable imitrex and oxygen.  Ox to be delivered tomorrow.  If an episode gets started, I may gun for IV DHE -- I'll ask my neurologist about it next week.

I googled the article and got started searching PubMed for articles -- Lots of new stuff written since my 2010 episode!

Jim