Wednesday, October 31, 2012

Neurology Strikes Again!

I visited the Neurologist (two of them actually) concerning my sleep study today and had two visits for the price of one.   First I talked to a delightful young blonde woman who reminded me of a friend of mine from high school so I liked her immediately.   She conferred with the sleep study neurologist who looked a good deal older and much more experienced.

Both saw me in the examination room and discussed these issues further.

The most important piece of information they had for me was that when I sleep my oxygen level drops, even with a CPAP.  If I lie on my back I stop breathing up to seven times, if on my sides maybe two.

No wonder I don't feel good in the AM.  What am I to do?

It seems possible that Zonisamide at 100mg is interfering with my sleep, so I should take that pill in the AM.   Tonight instead of taking 50mg or 100mg I took 25mg and tomorrow I will take a 50mg tablet in the morning.

Thank goodness for 7 day pill boxes.

Since muscle relaxants, especially Tizanidine which is STRONG medicine, relax muscles, it may be relaxing me to the point where I don't breathe.

I may have been drugging myself nearly to death.

I had been taking 12mg of Tizanidine in an evening, and for tonight I will drop that down to 4 which may help with the evening breath of air.   At the same time I should increase my dose of Gabapentin from 800mg to 1200mg or 1600mg because it is a safe drug, which will not interfere with my breathing.

I'll see if I can fall asleep without being drugged silly, or relaxed to the point where it kills me.

A couple of other issues - I will be referred to  an ENT (Ear Nose and Throat) specialist because I have a deviated septum (which the nice young neurology lady was nice enough to check).

I'll be sent over to Pulmonary to check out my lungs to see if there is some other problem, that causes my oxygen level to drop.

Over the last few days, I have started to take up to 12 mg of Melatonin a night so that if I need to get up in the night, I can get back to sleep again instead of feeling wired.

That dose of Melatonin may exacerbate my chronic headache.

I talked to two neurologists whom I liked, and they had some worthwhile advice.   I plan to use that advice, and it might improve my health.  I certainly hope so. 

They want to see me in six weeks time.  It's that bad.


Saturday, October 27, 2012

More Drug than I really Want in Me

I've been in remission for well over two years but the cancer (and some of the after treatment) left me with chronic neck pain and headache.

Let me assure you, quite unpleasant.

I've had a variety of drugs for this condition and the one I'm on now is Zonisamide.  Which has been an "interesting" experience.

Initially, the target dose was 200mg and that worked to alleviate my neck pain but it gave me a different kind of headache.  Rather resembling the sensation of having a small meat cleaver inserted into the top of my head, just a little to the right or left of the crown.

I tolerated that headache well, I believe, thinking that my pain had merely moved.  What forced my hand was the fact that as a programmer I have to be able to think, remember things and have some mental dexterity.   That dose of Zonisamide took all those abilities and greatly reduced them.

I also developed a difficulty breathing when I was seated at my computer at home, or with my head propped up on the love seat in the TV room.

Well, I sent an email to my Headache doctor and complained while at the same time I lowered the dose to 150 mg.    I felt better almost immediatly.

I still had some difficulty with work related judgement, and some mental confusion.  I still had difficulty breathing.  So I reduced the dose further and sent another email which was answered positively in due course.

I was almost happy, and had no sexual appetite at all.  And life was very dull.

Normally, I look out the window and enjoy the view.  Nope, not now.

So I dropped my dose to 100mg and that worked for the headache.  But my endocrine system doesn't work too well on that dosage either.

Zonisamide is classed as an anti-consultant.  But it has been used to treat migraine.  My headache/neck problem has been classed as a migraine, but without the nausea and some of the other side effects of migraine.

So I am experimenting at this point with dropping my dose further.  Down to 50 mg.

I had been toying with that dosage over the course of the last week, with a couple of days where I took the full 100mg dose.  Friday I had some of the old neck problem and headache.   So Friday night, I bumped the dosage up by 25 mg.  And no headache yet today.

Not that my head feels great.

So we shall see how this plays out.  Maybe alternate 100mg with 50mg every few days or try for a constant 75mg dosage.

The experiment continues.

Friday, October 12, 2012

Slap a CPAP on Me!

I had my "treatment" sleep study last night, and I've learned that I hate CPAP machines.  Although at the end of the evening I was almost used to the one plastered to my face. 

Initially, a small nose CPAP was put over both nostrils, and I inhaled with my mouth closed.  Sometime in the night the tech named Joe came in and switched out the nose for a mask that went over both my nose and my mouth.  I have vague recollections of the change.

This was a little difficult for me to get used to.  I could never cough properly, which is very important to me, and clearing my throat was an impossibility.  Whenever I exhaled I would feel the warm air on my mustache, and I had a reflex to not inhale.

Eventually I sort of adjusted to the device and I merely hated it.

I was asked to lie on my back, because that's where my apnea is worst.  So I had some events which the machine corrected for.

Wonderful.  Lie on your back so we can catch you having an 'event'.

I talk to the doctor October 31st.  I wonder if I'll be impressed with my condition? 

Tuesday, October 9, 2012

I went to bed

Well, here it is almost a week later and I have been really sick. 

Thursday I woke up with painful body aches and bodily sensations as though I had the flu.

Friday I was feeling OK when I got up, and as the day progressed, I felt worse.  Saturday, Sunday, rinse and repeat.  Monday I started to feel better and Tuesday I was silly enough to go in to work, and came home after having been clocked in for 30 minutes.

Relapse.

Thursday through Saturday were the worst.  Full body aches and that flu like feeling in my muscles. Since I had been to my oncologist on Wednesday I could see what my white blood cell count was and at 4.8 it was in the low-normal range.  

When Mary and I couldn't find a thermometer at home, we bought one. When we finally got it to work my temperature was 97.3 which is right about normal for me.  This was probably Sunday.

Saturday through Sunday my stomach really started to feel sour, so I took some Tums and Zantac to help my stomach.  It didn't help much.

I'm somewhat better. Not much, but at least the flu like feelings are gone and I only have stomach upset to deal with.




Friday, October 5, 2012

Almost a Week Later

It's almost a week since I dropped my dosage of Zonisamide from 150mg down to 100mg.  As in the come down from 200mg to 150mg, things have changed; somewhat.

I had a good night's sleep Sunday night (after knocking 50mg off my daily dose Saturday night).

I would say that I'm more intellectually functional than I was a week ago.  I'm sure my bosses will be happy to hear that (I don't believe they read my blog); but I have an ability to get lost in thought now which might be good for my programming.  Not so good when something has to get done.

At every dosage level, there are different side-effects.  Sometimes it's hard to tell what is a side effect and what is genuine illness.

Thursday I started feeling like I had the flu; not a good feeling.  It was a busy day none-the-less.  I went to bed almost an hour early, and woke up feeling OK.  But later in the day I have the same bodily sensations I had the day before.

I feel achy, by body has that flu like sensation and chills, although I don't have any nausea.

I don't know what I have.  Mary tells me I feel warm.  I can't find the thermometer to know what my temperature is for certain.

Do I watch Fringe Episode 2 Season 5 or do I go to bed early like I did last night?