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.