I started getting major headaches around 2002 – it wasn’t until 2005 that my neurologist determined they were most likely cluster headaches.  It’s been an up and down ride ever since.

I went through some particularly bad periods, getting 5-6 clusters a day but still somehow managed to function in the real world.  For years I felt like I wasn’t really a cluster headache sufferer simply because they weren’t “bad enough” to admit I had the condition.  I was simply a minor case and because I wasn’t debilitated by them on a daily basis that I had no real cause to complain.  The reality is we all experience pain differently and there is no way to tell if my headaches are any different, less or more severe, or a different form of cluster headache.  The point is we are all experiencing pain and the rest of the world typically thinks we’re making it all up or it’s not THAT bad.

I’ve been very lucky that I haven’t been chronic for a number of years.  I’d like to think regular exercise has helped curb the crazies in my brain.  I get a doozie once in a while, typically at night before bed time.  I’ve taken myself off all of the insane medications and have been able to stick with melatonin 12mg at night to keep the dementors out.  Every single day I secretly hope they’re gone or at least I get another couple weeks without going back to the 5-6 headaches a day.

So I’m still around, still experiencing pain but haven’t felt the need to use this blog as therapy in a while.  I had some issues with attention deficit and decided to take myself off of my medication.  I’ve been doing mental conditioning and physical exercise on a regular basis to help with my brain patterns throughout the day.  The standing desk seems to help change my focus patterns when I’m working, too.  I had to remind myself that the ADHD is something I can control with mental exercise – unlike the cluster headaches which I have none.  I can at least find a middle ground with the attention part. 🙂

Can’t believe it’s been since March when I posted last.  A lot has happened in that short amount of time.

My neurologist and I have continued with the testosterone therapy, increasing to 5mg/day and switching to Androgel from the Androderm.  The patches were leaving a heavy residue on my skin and it was not fun having to wear a three inch metallic patch everywhere.  At the 2.5mg/day we did not see any increase in my T levels via bloodwork.  I will be following up with him in the next month to see if the 5mg is enough; we may need to increase it further if not.  I did see some mild change in the headaches with the addition of the gel/patch but it hasn’t done enough yet.

Dropping Topamax has been great.  I have stayed on Zonisamide but would prefer to be off of it since I am on such a low dose and I don’t think it’s helping.  We have added Doxepin, an anti-depressant, and I think I’ve had the most positive results from it.  I’m on the lowest dose possible right now, and I suspect that will be increasing next time I meet with my doc.

I ended up going to the Diamond Headache Clinic in Chicago in April, and met with Dr. George Nissan – a well known DO specializing in cluster headaches.  The visit was pretty normal, getting my entire history in verbal form and documenting in the computer took the most time.  I brought MRIs from 2003 and 2005 with me in negative form, but he never looked at them.  After being with his assistant and him for an hour total at most, he came to the conclusion that I should be admitted to their ward at St Joseph’s Hospital nearby for a 5+ day stay to break my cycle and begin treating the cluster headaches.  He felt the treatments we’ve tried were valid but felt it was time to do an IV wash through of a number of things to stop the headaches for a few days to let my body reset for this cycle.  I ended up not going through with the visit, as I was told specifically not to notify my insurance and to treat it as more of an urgent care scenario.  I couldn’t get the time off of work easily, so I skipped it.  From what others have said online, that week there could have billed $50k easily to my insurance.  Who knows what wouldn’t have been covered.

I did get the clinical notes from my visit with Dr. Nissan and brought them back to review with my neurologist.  That’s where we got the idea of going with Doxepin and also took his suggestion and did an MRI with and without contrast.  Nothing too significant found, although there were some changes in white spots that the radiologist pointed out.  My doc said that could be an indication of Multiple Sclerosis if I didn’t have a history of migraines – and the changes he saw were not significant.

So that’s it for now.  I’m still having 1-2 headaches a day, but they’re bearable in the 4-7 pain level out of 10.  I get the nasal drainage with the bad ones, and I use a single Tylenol for the ones I can’t handle.  No NSAIDs for me any more as that was part of my problem to begin with.