Tuesday, July 23, 2013


Haven't posted in a long time.  I guess the only thing new is an update on my medical saga.

I saw a third ENT, supposedly an expert in tinnitus at UT South Western.  He did an exam, looked at my records and determined that I have tinnitus.  Duh. He had no treatment options other than what I've tried so far except for what he called 'tinnitus retraining', which is kind of like getting allergy shots.  It takes about a year or so and is expensive.  I guess they just teach a patient how to live with it.  Fuck.

It's not something I want to start doing now considering my goal of moving to Phoenix.  I think there's more going on than just the tinnitus.  The ENT finally said something that nobody else has in that he agrees I had an 'event'.  Something sudden happened to me, whether it was a viral infection or some sort of change in the brain.  I've been tested for many viral infections including HIV, syphilis, etc., and it's all been negative.

I've been having fatigue problems also, severe problems with energy levels and I take one or two rather lengthy naps every day.  The ENT suggested the potential of my having narcolepsy or chronic fatigue syndrome.  I saw my psych yesterday and she was intrigued by the possibility.  I did some reading on narcolepsy and my symptoms (not including the tinnitus) seem to fit a mild case.  The diagnosis for the condition will require a sleep study.  I may contact my PCP to update her with the info and see if she wants to coordinate the 'working up' of the condition.

Narcolepsy is basically a condition where the normal sleep cycle of the body is disturbed. REM sleep is critical in sleeping and narcoleptics have whacked sleep rhythms.  Even though they sleep, the body doesn't actually get the proper rest and so they are tired constantly.  It's the same as if they got very little sleep at all even though they may have slept for 8 hours.  In severe cases, they may even start hallucinating during waking periods as if they haven't had any sleep at all for many days because, as far as their body is concerned, they haven't.

An interesting theory about narcolepsy is that it might be an evolutionary hold-over.  From the wiki;

Narcolepsy may represent an evolutionary atavism. According to Tsoukalas (2012) REM sleep is an evolutionary transformation of a well-known defensive mechanism, the tonic immobility reflex. This reflex, also known as animal hypnosis or death feigning, functions as the last line of defense against an attacking predator and consists of the total immobilization of the animal: the animal appears dead (cf. "playing possum"). The neurophysiology and phenomenology of this reaction shows striking similarities to REM sleep, a fact which betrays a deep evolutionary kinship. For example, both reactions exhibit brainstem control, paralysis, sympathetic activation, and thermoregulatory changes. This theory, which integrates many research findings into a unified and evolutionarily well informed framework, also sheds light on the phenomenon of narcolepsy.
A couple months ago, the psych put me on Wellbutrin, which has a mild psycho-stimulative effect.  It didn't have any effect on me.  Six weeks ago, she switched me to Ritalin.  The dosage was pretty low, but I did feel a mild stimulative effect.  It was weak and short acting. I'd need a much higher dosage.  I told her that I felt like we were trying to kill an elephant with a BB gun and that we need to take it up a notch.  Yesterday she switched me to Adderall, also known as Amphetamine salts.  This is the stuff they give pilots on long trips ("go pills"), and athletes abuse as a performance enhancing drug.  This morning was my first dose.  The effect is different than Ritalin, and I think it's doing something.  I feel almost normal.  I also got some clonapin (a benzodiazepine) to help bring the tinnitus intensity down.  At this moment, it's pretty low.

The problem with these two drugs is that both are prone to tolerance, which is where the body needs more and more over time to achieve the same effect.  They're both addicting, in that coming off them sucks.  Withdrawal symptoms will happen.  I told the shrink that I can't continue on the current path of being excessively tired and the ringing screaming in my ears so this is a trade off I'm willing to have.

The idea is that this will get me able and motivated to get some things done, both at work and for moving to Phoenix.  I know that getting back in the gym may help me get my patterns back on track.  I need to be tired and drowsy when it's time to go to bed.  I need to get to sleep at the same time every night, and get a restful sleep.  That will help me during the day and decrease my need for speed.

Having an incurable illness is not something I ever expected would happen to me.  I had been pretty damn healthy for my entire life up until October of 2011.  Now I've got two incurable, but somewhat treatable, illnesses.  I need to manage them better, and look for other possibilities.  When I get to Phoenix, I'm going to try both hypnotherapy and acupuncture for the tinnitus.  I don't expect it'll help since my tinnitus appears to be grounded in something physiological that can't be fixed.  At this point, I will try anything.  As I'm sitting here this moment, the ringing intensity is pretty damn low and with the speed in my system, I feel nearly normal.  This is a state that I could do pretty well in.  The meds just can't keep me in this state indefinitely due to the tolerance.  I have to use this time to find other, more sustainable, ways to be this way.  My diet sucks and I need to be working out.  Those I can fix, but knowing me it won't be until I get to Phoenix.

I still miss John, and think about him a lot.  He had medical conditions worse, by a good margin, than mine.  I was tempted to think of our illness as an age thing, since we both had hit our middle 40s, but in my case, I don't think it is.  What I have can impact even children. I've been lucky to have been pretty healthy for so many years. Many young people have it far worse than I.  I just need the energy to take control and make progress.  I've been blaming myself for my poor progress with work and moving, but I'm just having to force myself to realize that these conditions are real and intense.  It's not a moral failing.  I'm not being lazy. I'm ill, and I'll be damned if I'm going to let physicians try and do the bare minimum for me to be able to get by.  I'm telling them now how I need to feel to function and they need to prescribe and properly dose to get me there.  I'm a strong willed guy, and I'll deal with the consequences of the meds when I have to.  I know addiction, I smoked for quite a while, and 7 years ago I decided to quit cold turkey.  No problem.  Of course, after John passed, I picked up the smokes again, but I know that when I want to, I can put them down without a problem.  They serve a purpose right now, so fuck it.  True, benzos and amphetamines are in a league beyond smoking addiction, but if I'm well enough, I can kick anything.

Mr. W. is being patient, but we're both eager to get this new phase in our lives started.  Right this moment is the closest to feeling like myself since I got sick.  I hope this keeps up, or even gets better.  I need to will myself to get out of the rut I've been in.  Being alone here doesn't help.  Well, I've got the dogs and I love them to pieces so I need to provide them a better home and more activity.  Riley is a spaz.  He needs the time and the space to be a spaz.  He's 3 years old now, and being a young dog he needs stimulation and challenges. When I get to Phoenix and the weather cools off, he's going to get it.

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