Testosterone Therapy for Cluster Headaches

A few weeks ago I found a research journal article on “Testosterone replacement therapy for treatment refractory cluster headache” in National Institute of Health’s PubMed library.  In it, it discusses there possibly being a link between Cluster Headache patients and low levels of testosterone.  Supplementing the hormone levels with replacement therapy has shown positive results, although the study was only performed with a small group.

Being more proactive about my headaches since the significant increase beginning in summer of 2010, I brought this research to my neurologist.  He is not a cluster headache “specialist” but keeps up on some of the newer research, and has heard of the link between the testosterone levels and CH potential.  While this treatment is very new and something he doesn’t normally do (I’m one of his very few CH patients), he was very willing to go ahead with trying it.  I got my blood tested and it did show my levels were low, but not necessarily as low as some of the patients singled out in the research paper.

He started me on Androderm, a dermal patch at 2.5mg of testosterone over 24 hours.  So far, the results have been positive.  It wasn’t an instant switch off, but it with the increase of melatonin back to 12mg have changed the headaches somewhat.  I’m hoping that over the course of the next few weeks that I even out.  My doc said this is an introductory level of the hormone and I will most likely increase.  The only problem is the Androderm patch is not cheap – nearly $5 a patch.  I really hope it helps for that price.

Cluster Headaches

The past eight months have not been good and it is why I’ve decided to come back to blogging.  Since last summer my headaches have come back with a vengeance and I’m in pain every single day without fail.  Here’s me in a few short sentences.

  • I have cluster headaches, not simply migraines. This fact has been made very clear to me and I’m finally listening to my neurologist this cycle.
  • I’m keeping a very good migraine diary. My iPhone app sucks and I need to rewrite it to be more suitable for all experiences.
  • My medication trials were not good enough in the past and I’m re-trialing Topamax, zonisamide and melatonin.  I’m even going today to discuss testosterone therapy with my neurologist – something I’ve discovered through NIH research.
  • I’m having 3-5 headaches a day, all on my left side. My nose drains, eye typically waters.  They last from 5 minutes to 15 minutes to 30 minutes.  Some last hours.  If I do not medicate they can go away on their own.  Typically I have to medicate with an NSAID like Tylenol or Alleve.  I am taking way too many NSAIDs.
  • In the last three months I’ve documented 235 headaches.

I plan on giving a better catch up soon.  I wanted to post something to get the ball rolling.

Four Years Gone By

We’re approaching the fourth year I’ve maintained this blog.  I never really established a mission or goal for the blog other than to be a place to complain about my migraines and maybe find someone who wanted to listen.  What I’ve learned over time is that complaining (or whining as I frequently call it) gets old quickly.  I’ve made a decision to discontinue the blog not because I don’t have enough people reading it but just because I think I don’t have a lot to contribute to “the ether” of the Internet.  I’ve found a few friends through the trials of this and will continue through Facebook or Twitter to maintain those connections.  I’ve seen a lot of bloggers go the way the wind blows because the venture can easily feel like a job (an unpaid job) and no longer a fun journal that happens to be public.

What have I learned from this experience?  I’m not alone in the world of migraines.  Everybody has a different experience with migraines.  Drugs aren’t the answer in every case.  Questioning your doctor on treatments is acceptable and should be expected.  Giving up isn’t an option.

And lastly, the most important lesson I’ve learned?  The pain reminds us that we’re alive.  Without the pain we’d go through life not understanding what a gift it is to be able to relax without pain and distractions.  That pain keeps me from being a sheep, tooling around life without knowing where I came from and where I want to go.

Cycle Returned

So I’m now back at the point that I believe I will be visiting my neurologist and get put back on an antiseizure medication.  The frequency of my migraines is now at least 5 a week that require medication.  The other day I had a really strong attack of nausea and couldn’t attribute it to anything except a possible aura of sorts – so I took some NSAIDs and it eventually went away.  I’m contemplating Topamax again, simply because it worked, and because I see it now has a generic out there.  I need to call my insurance company to see if they cover it since their super duper website says it’s rejected and I’m supposed to have coverage on essentially all generics.

Down side is the “dope-a-max” effect that comes with the medication.  I also get tunnel vision episodes with the medication which is unnerving but tolerable.  Since I was a little child I’d get these tunnel vision episodes maybe 2-3 times a year at the most and usually only during falling asleep and as an adult sometimes when drinking alcohol.  This medication triggers is every day nearly and it honestly had my neurologist baffled.