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.

My neurologist and I have decided to stop Topamax because I have been having vision issues, like the last time I was on it.  Waking up in the morning I would get ghosting of images and my eyes in general would hurt all day long.  This probably is related to the possible side effect of closed angle glaucoma that Topamax can induce.  I had my eye pressures checked a while back and they were fine – but I didn’t again after increasing to 200mg/day.

The other thing I hadn’t realized is that Topamax seems to have been affecting my ability to develop software.  You’re reading that right – it prevented me from finding the right CODE TO TYPE.  I thought it was concentration issues or just the headaches in general but I think it has to do more with word association and the ability to think ahead of the code before programming it.  Even a few days after being off of the Topamax I could tell something had changed and I was back to my previous performance levels of slinging out code and finding solutions to problems.  I’d almost say that I’d rather deal with the cluster headaches than not have the ability to be a software engineer.

Anyone else have this type of experience?

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.

http://www.PainInTheHead.org

The old site should redirect.

• 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.

If you’re interested in downloading the application, follow this link and click the iTunes App Store icon.

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.

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.

The migraines have been pretty consistent lately.  I get 1-2 attacks a week with most of them responding fairly quickly to over the counter medication.  I talked briefly with my neurologist this week and he said if OTC is doing the job, then we don’t have to look at going back on to anti-seizure medications any time soon.  I don’t take enough of the NSAIDs for them to be an issue with my liver at this point.  I’d like to be on a prophylactic medication but the side effects from the ones I have been on aren’t really ideal for me.  Topamax had such a positive effect on the migraines but making me turn into a stupid idiot was difficult to handle.

School has been going well over the summer.  I’ve been making headway on my iPhone migraine diary and may even have something out there by the end of summer.  I have to remember I’m not doing this to make money on the iTunes store, but rather get a good grade for my graduate Capstone project.  Rushing to get it out to the market isn’t what I would consider a good idea.  However, if I got real world users to help with the process along the way, that could make for a very good final presentation.  On a good note, my neurologist is totally on board with helping me with the application!

Summer is FINALLY here in Wisconsin and we’re having our first 90+ degree day.  Can’t say I’m thrilled for the heat and high humidity, but it’s nice to have the body clock reset after a really long winter.

Today I was in the restroom at work washing my hands and I looked up.  What did I see?  One of those evil machines staring at me with its single eye of death spray.  I thought to myself, you need to leave now before it sprays.  As I was drying my hands with my back to machine, it lets out the puff of air.

Awe shit.

Not more than two seconds later I felt the mist hit my neck and then into my sinuses.  You’d think the floral scent would be relaxing, but it’s not.  I’m very lucky I didn’t get a migraine out of this experience.  But now I know, the machines can read your thoughts and are as devious as those squirrels that run out in front of cars to make you swerve to miss them.