Has it been that long?

New Year's Eve will be the 4th anniversary of my first R-CHOP infusion. 

I almost remember it well.  But if for some reason I can't, I took notes and published them. 

This has been one of those experiences that you only want to endure once in your life - and better at the end.  THIS IS THE FIRST R-CHOP POST.

I've often thought that I was lucky to be almost killed by cancer at the end of my life rather than earlier since I did have the option of retiring eventually. 

And I don't have all that much longer to go.  I'm mid-way between my 64th and my 65th birthday and I will be surprised to make it to 70; 80 will be a real shocker.

But I used to do Kundalini Yoga which gives one a sense that we only seem to die.   Unfortunately, dying can be a stressful process; at least until the dying is over and wakefulness begins.

I'm not worried.

The Fog of Drugs

I'm surprised at how long it took to subdue the headache and neck pain with the Zonisamide.   I had been so hopeful and I hadn't considered how difficult it would be to deal with any pain that might show up after I had been off for more than a couple of weeks.

My body will not be a drug free zone.

Just an FYI: The title is a misquote from history; in this case Carl von Causewitz.  There are a lot of foggies out there and right now my brain is foggy.

But I'm not in pain.

Sometime after I got back from vacation I had a stressful week at work and my headaches came back.  When I started 50mg Zonisamide a day I felt better but the pain did not go away.

It took a few days for the nausea (a masochistic pleasure from Zonisamide) to clear and I upped the dose to 50 2X day, although not at the same time.   I would perhaps take 50mg sometime in the afternoon and then one in the early morning after having my Sinthroid.

I'm getting used to being dosed heavier than my previous 50mg/day.  Goodness, I have enough of the stuff, no use letting it go to waste.

I would probably be feeling better if I had slept if off, but I got out of bed, brushed my teeth and fed the cats.  By the time Mary was about to get her coffee I took a shower and afterwards went to the local grocery with a list and retrieved the goods for another week.

And I'm a little tired and possibly brain-dead after that.  Thus the fog comment in the title.

Off the Six Month Rotation and Onto a Year!

I saw my oncologist today and he thought that I looked so good that I can see him in another year instead of six months. 

This makes scheduling other things much better.

I dropped 10 lbs. to 233 and I feel good about that.

My appointment was rescheduled so I had the phlebotomist at 2:15 and my doctor at 3:20; it was sometime after 4:30 when a young woman introduced herself as a fellow on staff and proceeded to undress me with her eyes.

She reviewed my blood results and said that my potassium was just a bit high and physically examined me without requiring me to undress.   Shucks!

It was a very slow afternoon, and I was coughing and with a runny nose for most of it.  The LPR (Google That) strikes again.

Mary had me get off coffee (caffeine) and Altoids yesterday and I have been improving.  I don't wheeze like I was doing Sunday.  

Trashing the Drugs and Maybe Leaving them Behind

Mary and I drove to Madison Wisconsin from Chapel Hill, North Carolina, and a pleasant and long drive it was.  We both saw family and it was nice to get back to where we grew up.   Things change, her father is over 80 and doesn't remember things.   But we had a nice time visiting.

We drove to Milwaukee from Madison to see my family and actually my brother Tom is over 70 and relishes having grandchildren.

We left on a Thursday, and I had taken a 25mg Zonisamide the Sunday before.  It was my last dose.

When we arrived at the first hotel that night and I discovered, rather late, that my Oxygen Concentrator didn't work.  This was after I had taken 2mg of Tizanidine.

I could feel the affects of being without oxygen for the night when we began driving the next morning.  It was like I was dirty inside all over my body.

I stayed off my serious muscle relaxants for the rest of the vacation, although I did take a 500 mg tablet of Chlorzoxazone once or twice to counteract muscle spasms in my back.  I was trying to reduce the affect that the drugs I was taking had on my breathing while I slept.

For the rest of the trip I slept well. Without oxygen and not feeling bad the day after.

I have not had a Zonisamide in a couple of weeks and last night I slept without drugs and also without Oxygen.   It was a good night's sleep.

The reason for taking  Zonisamide (at 50mg/night) and Tizanidine is for the headache that I've had since the end of my cancer treatment.  But the headache, much to my surprise, was gone once I stopped the drugs.
 
I will have to go back to the Neurology department at UNC and  get a monitor for me to sleep with to check my O2 level at night.  Just to ensure that I can get by without and O2 assist.

The O2 is dry and gives me a sore throat (or a dry throat) and I would like to be able to live without it.

I wonder if I can?

 



 

Diplopia, Diplopia Wherefore Arte Thou My Diplopia?

A few weeks ago, I noticed when I was rummaging around in the Master Bath at 3:00 in the morning I was able to see straight.  I took this to be an optical illusion.

Two weeks ago, as I was getting some socks out of a drawer and I noticed that I was only seeing one dresser and one drawer.   I brushed it off as an effect of the lighting and the fact that I was still asleep.

Later that week and last week I noticed real improvement in the morning.  I took the prism off my computer glasses and was once again able to see typed letters clearly.

I took the 5 diopter right prism off my distance glasses. I was able to drive pretty well and able to see much more clearly than when I had a 20 on the left lens and a 5 on the right.

Monday I visited my neuro-opthalmologist and had my distance prism reduced to an eight.

When he had measured my eyes last time on May 23rd 30 diopters were required to correct my eyes. 

My eyes are better later and later in the day.  It's a little past noon and when I look out the window that the tall trees across the road I see them clearly without any special prisms on my glasses.

My Diplopia seems to be vanishing.  It will be time for the beach in a few weeks and I will be able to drive some of the way there.  Wonderful!

Drugs of My Desire

Muscle relaxants for the relaxed:  I have some new drugs for my head/neck pain one of which is Chlorzoxasone which is less of a sedative than the Tizanidine that is already prescribed.  I can take it during the day and it won't make me fall asleep at my computer.

Also I have a half dose (2mg) of Tizanidine which is helpful because it's better to be less sedated.  I'm sure I breathe better (more) when I sleep if I'm not so horribly drugged.

Both of these drugs are muscle relaxants, but the Tizanidine is much more potent.  Knocks me out at the right dose.

The 50 mg of Zonisamide that I take each day keeps most of the head/neck pain away, but I still need something to deal with what's left over.

I still have chronic pain.  It's the leftover from lymphoma and it's aftermath.  I will probably never get over it.

But I do have drugs, and they help a whole lot.

T Scores for the Disambiguated

No wonder I'm such a crotchety old man.   These are my test scores:

TSH (Thyroid Stimulating Hormone)     1.353 (normal: .350 - 4.500)     mIU/mL
T4 (This is what TSH should be stimulating I think)  11.3  (normal: 5.0 - 12.5)  ug/dL
T3 (Your, whoops my body produces this from T4)   85.7 (normal: 80.0 204.0)  ug/dL

Well, this is normal.  My thyroid pills are T4 which my body converts to T3.  I take in 125ug per day.

I am not hyper-thyroid which is inconsistent with my eye problem as revealed by the ultrasound.

Isn't life crazy?

What's the Prognosis Doctor?

Well, what's wrong with my eyes, and how is it so much unlike what's wrong with anybody else's eyes?

The ultrasound was over in about a quarter hour.  I was invited to have a seat and tilt my head back on the "special" chair while drops were splotched into each eye to let them go numb.   Considering all that I've been through, and am going to go through, not the worst thing.

The entertaining part came when a somewhat viscus something was put into each eye so that the special wand could be applied to my eye; or my eyelid.  I don't know which.

It was about as big around as a thick ball point pen, and about as long.  But the end that went against my eye was flat.  Fortunately.

Look up that way; keep both eyes open. Yuck!

A smelly solvent was used to clean out my eyes and I was given instructions not to rub them for about twenty minutes.

This was Tuesday afternoon, and then that night the ophthalmologist called and explained that my condition was consistent with hyperthyroidism.  Which I do not have.

If you don't know - some of the muscles are bigger than others and pull the eyeball in that direction.

I'll be seeing that doctor in about six weeks to see if things have changed - and then I hope to enjoy the surgery.

That's a joke. Stick that scalpel in my eye and sew it up after. Like I'll really enjoy that experience.  I'll be out, but they have to wake me up to check that they did it right. 

I called my regular doctor's office to find out when my last thyroid checkup was and it was back in October, and they wanted me to come in and have a thyroid panel immediately.   So I did.

For you medical types (or mere aficionados) my TSH, T4 and T3 were normal.  

I Hope they Don't Have To Cut me!

I saw a neuro-ophthalmologist today at our local Big University Hospital.  I prefer teaching hospitals since the residents are actually interested in you.  Not bored. Willing to share information.

There were three doctors altogether.  The Family Practice young woman just listened in and the resident, I can't remember his name, would occasionally explain things to her and I was happy to listen in then.  Then the Great Master who spoke so fast I was happy to have the resident around just because he seemed more normal.

I'm toying with the idea of doing all my ophthalmology there since they showed a degree of life that I rather liked.

They worked quickly but were patient with me.  I had my list of symptoms that I had observed and they listened to me for the COMPLETE LIST.

I am well disposed to this treatment.

But my double vision can best be described as:

• Both eyes are screwy, but more the left then the right.
• Probably not diabetes but it could be a contributing influence
• Probably not Gabapentin although I am on such high doses of the stuff (800 mg Tabs X 4/day,  which I have reduced to 3/day).  Reducing to 3 has not helped my symptoms.  But my doctor was talking off the top of his head when he said NOT RELATED so I'm not sure that I trust that.
• Neither eye shows any sign of diabetes and I've been one for 18 years.
• Could be Thyroid Disease (which I have). 
• Could be diabetes related although with the control I have of that disease not likely.  Diabetes could be a contributing factor.
• The muscles on the sides of my eyes may be too large thus hampering movement.
• Could be some combination of the above. 
• Ultrasound is planned for next week.
• May need surgery to resolve the issue. 

I'm so happy that I worked extra earlier in the week so I could be OFF today.  My eyes feel crappy and don't focus so well after all the stuff they poured into my eyes.

Not What it Seemed at First

Just remember this the next time you talk to your doctor.  If the evidence doesn't quite support the theory, throw out the evidence.

Initially my vision problem seemed to be a diabetes problem, although my HbA1C was 6.1 and had been in the sixes for a while.

So maybe it's an age problem.

Then I explained where the prism in my computer glasses worked and where it didn't work, and I moved my gaze to the left.   If this had been diabetic neuropathy I should not have been able to do that.

My ophthalmologist was alert enough to recognize that he wasn't dealing with a normal diabetic or age related neuropathy.

And I am on my way to see a neurological ophthalmologist which I expect to be great fun.

If I had diabetic neuropathy I could expect this to disappear in about three months.  Now I don't know what to expect.

  

Ophtalmalogy, Peoplse Say...

I'm getting tired of seeing my ophthalmologist.

I'm wearing the F.... prisms on the left lens of both my computer glasses and my distance/multifocal glasses. 

My left eye is my dominant eye, which I discovered the week after the prescription was made.  I'm asking myself, "Aren't they supposed to go on the other lens?".

Well, it's nice to see things, and not see two things.  At the same time.

I haven't attempted driving - this is only day two.  Which is much better than day one when attempting to type would have been a vain attempt.  

So I see better, and I see the little vertical lines which might be easier to ignore if they were on my right eye.

There is reflection, and sometimes I'm aware of the prisms.  It's anoying.

If this gets me though the next few months to the point where my eyesight comes back then I'll be happy with them. 

Eventually, I can retire, and take a break when my eyes bother me.

Colors of the Rainbow

Just to let you know, nothing to discuss about the MRI. All clear.



I visited my ophthalmologist on Monday, and I will be visiting him again on Monday.  Nothing is quite so disconcerting as seeing two technicians who look identical asking you questions, so I walked up to the receptionist with my patch over my right eyeball and signed in.

I had wondered how Diplopia Mania was dealt with as a practical manner, aside from my simple technique of closing one eye or wearing a black eye patch.  They both have drawbacks.  If I try to keep my eye closed, my eyelid gets tired. 

The patch can make a sore spot just over my eye.

My eye likes to see light. Strange. And if I put the patch over one eye, and then take it off, I have two images in my head, one rather dim and one very bright. 

Monday on my next visit I find out the details and it appears that my difficulty (double vision) will be resolved via the use of a Fresnel Prism.   My ophthalmologist said that my problem is from diabetes and my eyesight should return to normal in about three months.  The prism will be a temporary fix to move the image from one eye over so it matches the image from the other eye.

I don't really know how they're going to get that to match up perfectly.  And prisms break down light into its constituent colors, so I will be able to see things clearly but with a psychedelic halo of some sort.

To think people used to take drugs to see colors.  I will for free, and I can take it with me legally.

Fun and Games in the ER

I don't see things the way I used to.

To write this I have to look at it sideways, and sometimes I squint.  The number of lines can appear to change.  Two dimensions look like three.

Things blur.

Thursday my eyes felt a little crossed.  By Friday it was enough so that when I looked at distant objects, I saw two of them.

This could be anything.  Or so I thought.

Called our doctor he recommended seeing my ophthalmologist and if I couldn't talk to him, go to the ER because it could be something serious.  

So Mary drove to the ER at our local teaching hospital that I've been visiting far too often over the years, and I discovered some new things about it's secret corridors, passages and procedures.

And also that the MRI orifices stay open until deep into the night.

We had not had dinner when we rushed off at 5:30 or so to the Emergency room.  So I did not have my usual doses of antihistamine and nose sprays.  Or dinner for that matter.

Mary stolidly helped me though the process.  And the long waits.    

A likable young man asked me to remove my shirt, commenting that I hadn't been asked to do that in a while.

I told him that I was a fat old man so I don't like to remove it in front of people.

He then started put a needle into my arm and as I was muttering that I just went through that a week ago when I looked down and noticed that I had a catheter sticking out of my left arm.
 
Thus began this adventure in the ER, just a room or two over from where I think I was when I had come in to have my appendix removed.

I was given what appeared to be a standard neurological exam by an attractive young resident physician whose name sounded something like the name of one of the vets who work on our cats from time to time.

She chatted with her boss who was an attractive woman of perhaps my age who explained why my problem was probably not a tumor after a lengthy process that involved her waving her finger in front of my eye.

Thank GOD.

I always enjoy the company of attractive women, although given the amount of mutating chemo I've received over the years about all I can do is talk to them.  I feel a bit like someone examining a new and fascinating variety of fauna.

But I came to the realization that all I could do was be polite.

 An ophthalmologist was called for, and eventually one arrived.   A very tired ophthalmologist.

Drops in the eyes. Pressure test by pressing something that looked like a big ball point pen against my eyeball. More Drops.  Blinding light in the eye.

He had to fetch some other implements and get back to me.  It took a while.

He used a big lens.  He shined more light in my eyes.  He said my eyes are slightly crossed.

I looked up double vision on the web today and found the technical term: Diplopia.  That's it.

Diplopia was also on the exit papers.

I think he actually used the term Strabismus at some point in the conversation.   He said I should see my ophthalmologist.  He talked about corrective surgery.

Sometime in the middle of the long waits, Mary had found a blanket for each of us which we needed because our little curtained off area was right under the cold air outflow vent.   The blankets lessened the feeling that we were freezing to death.

Shortly after 11:30 I got to go take a ride in a dreaded MRI machine.   It has sounds like a wheezing bellows, loud low sirens, buzzes, vibrations and a peculiar jackhammer going off right in your ear.

I wonder sometimes, since I've been in these things before, how they managed to get that large an entertainment center around such a small doughnut hole.

The process was a little different this time than the other times I've been inside one of these bizarre contraptions.  No earplugs, just a towel around the top of my head and ears which fit inside the bird cage that holds my head.   Actually better than earplugs.  I tried the earplugs a couple of times in the past and they never worked.

The blanket was over me.  I got warm. Hot. Nauseated.  On top of that my sinuses were clogged because I had not had my evening's drugs to keep them unclogged.  I couldn't breathe properly

Nothing quite like hot nauseating suffocation while stuffed in a wiener shaped tube.

The technician sensed that I was in distress and removed the blanket and I felt a wave of relief.  But the nausea was hard to get rid of.  

Like all tortures, it ended. There is nothing as good as that first full breath. When you are magically slid out of the machine.

I recommend this as a torture, although I can't guarantee it will get people to talk, they will find it disturbing.  Especially with a little sleep deprivation; as was my case.

Well, back to the ER via the secret passages, and the cold room.  Since there was mere cloth between all of us various inmates, we got to listen to some of the problems that people had.  A young attractive woman bleeding and wanting to avoid a pelvic exam.  An old or not so old man with an uncomfortable case of cirrhosis of the liver; kidneys failing.  The ER doctor explaining that not all alcoholics get it but he had it so he had to stop drinking.

Eventually, sometime after 3:00 we were on our way back home.  The preliminary reading of the MRI indicated that nothing dangerous was going on inside my head. As we drove home where there was one person on the sidewalk, I saw two; there were two sets of yellow lines and the road either veered off in one direction or another depending on how I looked at it.

I thought to myself that I cannot drive like this.

The young nurse who catheterized me asked me what I did for work, and I said programming. Not referring to anyone in particular he said that a lot of the patients that came to the emergency room did not have jobs.    They simply had their bill paid for by the government.  Why work?

But he was working, I was working.  I told him it was for the good life.

A Doctor here a Doctor there, Doctor Doctor everywhere?

Monday I began my day with a fasting blood draw.  Tuesday I saw my oncologist at the cancer hospital and had another blood draw.

Both blood draws were from my left arm.  It's Saturday, and I still have a bruise, but mostly from the blood draw at the cancer hospital. 

My regular doctor's phlebotomist didn't leave a mark.

Next Monday afternoon I see my regular doctor and he'll explain how my blood work looks.

Just because my oncologist liked what he saw in my blood, doesn't mean my other doctor will.

My regular doctor is looking at my diabetes and cholesterol; but mostly the diabetes.  When my diabetes gets better, the lipids tag along.

I control the diabetes by eating fewer carbohydrates.  Breads are my favorite. Pasta.  The things I love.

If I can somehow reduce those kinds of food, and not eat too much of the proteins and fats, then my blood sugars come down.

I haven't had the appetite recently that I used to have, which might help. 


I think the oxygen has been helping too.

On a more cheerful note, I've been adjusting my medications again.  In a vain attempt to take the pain away, I had been having half of one 4 mg tablet of Tizanidine; I even went to the trouble of purchasing a pill slicer.  I noticed last Wednesday when I was in the staff meeting with my boss, and afterwards in a private session that I was turning into a zombie.

So I decided to add 25mg a day to my 50 mg of Zonisamide and drop the Tizanidine altogether.  Which I started last Wednesday evening.

The neck and head pain isn't quite so bad, and I don't feel quite so much like a mindless drone.

Work seems OK, but we will have to see what side effects crop up.

Last time I was at a higher dosage I had shortness of breath at odd times of the day, usually in the evening.

But I'm on O2 now and that helped so much with breathing during the day.

PS This is my third year of REMISSION!

Sleep study? Not on your LIFE!

Mary showed me the bill for the third, and final sleep study.  I would take a drink of something strong to ease the shock but I can't because of the drugs I'm on.

I am so thankful that the sleep studies are over.  I truly hate them.  The sterile room, the wires pasted to my skull and other body parts with glue; the smells; the camera in the corner.

The first two studies indicated that I was being drugged to death.  I was taking 200mg of Zonisamide and 12 mg of Tizanidine each evening and I wasn't breathing enough.

My blood oxygen level would drop to about 70% for over an hour in the night.  A CPAP machine did not help.

There are differing opinions about which drug was worse, but it might have been a case of the double whammy.  Academic articles about how they combine to truly sedate or whatever are behind an academic firewall and I don't have the credentials to read them. 

Not to mention understand articles written in dense medical language.
 
Since I'm not as overdosed now, it's not quite that bad.  But my natural state would be to die somewhat early because it's a chronic condition.  When I roll over onto my back if I weren't on oxygen, my blood oxygen level would drop to 83%. 

As one doctor explained to me: like high blood pressure, it's a long term problem.

Since I've been on oxygen and also since I've been wearing strap on bumpers I feel much better. More alive. Actually good for once.

So although I didn't enjoy the sleep studies, they were worth it.

Rubber Baby Buggy Bumpers

I am now the proud owner of a strange and brilliantly designed contraption that goes around my chest and has three "bumpers" on the back to make me into a side sleeper.

The picture in the advertisement is of a young woman sleeping comfortably on her side with this thing around her, preventing her from rolling over.

Like the O2 before it, this wrap around set of bumpers (there are 3) prevents me from rolling onto my back at night.  I think I feel better because of it.

Sometimes I roll over onto my back and mouth breathe, and when I do that I'm not breathing the O2 from the machine.  Yesterday, after using the device for one night I didn't have my usual down time in the afternoon.

What could possibly be wrong?

Why would I be writing this blog post at 5:00 am?  Well, I woke up and eventually looked at the clock around 3:45.  

I once saw a program about how often people change positions in the night.  Quite often.

I slept on my side. The same side. The same position. This is the down side.

My right knee and hip ached when I got up.  I tried sleeping on my other side, but my left shoulder and are are injured (stupid workout injury) and that was uncomfortable too.

But I'm starting to feel better, and I don't think I was oxygen deprived all night.

So I'm systemically better, but my joints and some muscles aren't feeling so great.

But I don't think that's such a bad trade off.  And I might modify this thing so it not only does it's job, but has a degree of comfort too.  So I'm optimistic as to outcome.

How's that O2 thing Working Out?

Physically, I feel somewhat better with O2 than without.  I think my blood sugars have been running about 10 points less than what they were usually.  I feel more robust.

The machine makes a momentary loud high pitched squeal when I turn it on.  Once one of the cats was in the room, and she ran and hid.  I don't wear ear plugs at night (like Mary does) and I'm right next to the machine when it goes off.

The machine is on my side of the bed and while it is running, Mary tells me that it sounds like there's another person in the room. With asthma.

If I wear the "cannula" which is the medical term for the hose (I think) that connects me to the concentrator, in the prescribed manner - that is draped over the ears and down in front where it joins under my jaw, my ears get open sores.

I have taken to putting it on over the top of my head so that the little plastic clasp that tightens it - tightens it around the back of my head.  The little prongs still go into my nose - but the hose goes up above my ears and is held tight at the back of my head.

Much less wear and tear on my ears.

The technician who did the sleep study was something of a jerk, but he gave me a piece of very good and helpful advice - get a humidifier.

So I got one and I turn it on (or Mary turns it on) before I go to bed and Mary turns it off when she gets up in the AM.

I only put distilled water in it so it won't gunk up with mineral deposits.  At least not so soon.
 
So two pieces of advice: there's more than one way to hang a cannula, and get a humidifier.

I find it interesting that the doctor who prescribed the O2 didn't tell me about that.

O2 for You

I (we) took delivery last night of an oxygen concentrator.  Signed all the papers, hooked it up and went to town.

I decided against accepting the BIG GREEN TANK of oxygen which would have been for emergency use.   We didn't have a place to put it and the young lad who explained how it was to be used told me that it had 50 feet of line to connect it to me in the event the power went out on the concentrator. I had visions of one of the cat's chewing on the soft plastic hose that would run from my nostrils to the tank. 

It had a regulator and looked like a fire hazard.  If the place caught fire it could explode.

I explained that I don't have a severe problem, so there are no "emergencies".  I wondered why the doctor had prescribed that.

The concentrator itself is a floor model and about the size of a roll-about carry on bag; but about 4 times as heavy.   Lead weights in the bottom.

I only need a liter an hour, so it's not much but considering that my O2 level dropped to 83% with O2 during the sleep study, I can see where I need it.

I got a very good night's sleep and did not wake up with a headache this morning.

I've only been taking my usual aspirin today and I had no pain.  NO PAIN!

Actually, I'd say this O2 stuff is a definite plus.    

It occurred to me that I was left out of the loop as far as  what was going to show up at my door.  I didn't know a thing about it until it was there.

Need a Little Air in Here!

I heard back from the sleep clinic, found some interesting (well, distressing) things.  If you remember from back in the summer and fall I had an O2 levels down to 70% for an hour and a half, or an hour on the later sleep study.  The neurologist thought it was the muscle relaxant and the pulmonologist thought it was the anticonvulsant.


I've reduced the anticonvulsant to 50mg and dropped the muscle relaxant completely - and I still have a problem.   Shortly after I fall asleep my O2 level drops to 91% and then about 1:00 in the morning I rolled over unto my back and it dropped to 83% for 77 minutes.

Eight events per hour means my sleep apnea is not severe, but the O2 level, as the doctor said is like high blood pressure - it is deleterious over time.

The doctor I talked to recommended oxygen at night.  Yuck.

We'll have to see about this.

It is safe to say, I hate SLEEP STUDIES!

I know the title is a bit emotional but Thursday I have to endure another sleep study.  I miss sleeping next to Mary.  I don't sleep well when I'm away. 

I hope I don't leave the house and forget something important like the drugs I need to fall asleep. 

In the initial sleep study, I was on 200 mg of Zonisamide and taking 12 mg of Tizanidine just before bedtime.  I'd fall asleep immediately, while I was being wired up.

My blood oxygen level dropped to 70%. Below 80% is considered unsafe according to a Pulmonologist I saw later.

I didn't actually talk to anyone after the first session, the Neurologist who ran the study called, but I was out with another doctor appointment.  She talked to Mary and asked if I was on Vicodin, which I wasn't.

In the second sleep study, also called the treatment study, I was on 150mg of Zonisamide and 12mg of Tizanidine.

I had a breathing mask helpfully placed over my nose and then over my nose and  mouth while I was asleep.  I was re-fitted throughout the night.  I can't imagine how I would put one of those things on by myself.

Let alone assemble one of them. 

I started on Zonisamide for my headache (which can be characterized as an iatrogenic migraine induced by an anti-cancer drug) in June of 2012; using Tizanidine as a rescue drug.

If I had been following the doctor's advice to the letter I would not have been taking the rescue drug to fall asleep so regularly. But I was used to taking a muscle relaxant to fall asleep because of a tumor in my neck in the past and I was very afraid of waking up with pain.  

Sleeping sleeping while lying down made my neck hurt.  I never really tested sleeping without a muscle relaxant.

Three months later I had talked to the the doctor who prescribed them, and explained how I took them and when.  I didn't know that I was doing something dangerous until I talked to the Neurologist November 1st  which was after the treatment study.

Which just proves that you can be injuring yourself and still look pretty good.

The Neurologist  (I talked to two) did not explain how low my oxygen level had fallen or for how long exactly.  Only that it had fallen to a low level and that I had seven events per hour when on my back and two when on my side.   

It was worse in the first study.  The Oxygen deprivation was worse.

Both the Neurologists pointed to the Tizanidine as the culprit because it would sedate my muscles to the point where I would not breathe at night.  

By the time I saw the Neurologist(s) for the first time I had reduced the Zonisamide to 100mg which was half the original target dose.  At 100 mg I did not wake up feeling good the following morning and when I took a 50 mg capsule in the evening instead of the 100mg capsule, I felt better.

I had also developed a breathing problem, the mention of which sent me to the Pulmonologist.

The Neurologist thought that my breathing problem during the day was from GERD (Reflux Disease) and said I should take Prilosec OTC for that (which I did eventually); since I was feeling crappy in the morning she suggested either taking the Zonisamide in the morning or breaking up the dose into two doses and taking one in the morning and one in the evening.

I tried the Zonisamide in the morning once and it had too much of an impact on me.  I contacted the my headache doctor and asked that my prescription be modified so I could break up my dosage.

It took a while to get in to see a Pulmonologist .  By that time I was taking 50 mg of Zonisamide in the AM and 50 mg in the PM.

I was taking one Prilosec OTC a day and still had a breathing problem.  The Pulmonologist thought that my breathing problem during the sleep study was from the Zonisamide anesthetizing my mid-brain. 

The plan that my Pulmonologist and I agreed to was for me to reduce the dosage of Zonisamide as far as I could and then do another sleep study.

That's the only way to tell if there is still a problem. 

So in the evening I take 50mg of Zonisamide and 4 800mg tablets of Gabapentin.  The Neurologists said that Gabapentin won't relax my muscles to the point that I don't breathe.

Theoretically.  Of course I'm sure they have clinical evidence to back that up.

What about a little Topamax?

I'm currently on 50mg of Zonisamide that I take each night along with from two to three 800mg tablets of Gabapentin. I like to have a 100mg capsule of Zonisamide Friday night to help my neck feel a little better.  The 50mg of Zonisamide is good, but if I stick to that for four or five days I start to feel neck stiffness and can feel my neck crack when I move it around.

If I have a 100mg capsule two nights in a row I have breathing problems the third night; and don't feel great when I wake up the day following the second dose.

I read somewhere that Zonisamide is also used off-label for treatment for bipolar and personality disorder.    I feel so marvelously treated.

I've noticed that I have a bit more patience and if I have 100mg dosages over the course of several days I feel just extraordinarily high when I start taking 50mg each night.  It takes several days to feel normal.

Topamax was offered as an option when I had breathing problems at 100mg per day. Technically, I can get by on 50mg per day with the occasional Friday night depth charge of 100mg.   But really wouldn't it be nice to take a drug with the same dosage each day?

Topamax is in the same class as Zonisamide in that it is an anticonvulsant.     

Sometimes Zonisamide is described as treating partial epileptic conditions primarily while Topamax treats full blown epilepsy (among other things).

Just like Zonisamide, shortness of breath is a side effect.

After reading the drug descriptions and WIKI pages, I don't really understand the difference between the two drugs.  Possibly Topamax wouldn't cause a breathing problem for me because they are two different drugs and I could react to it differently, but I can't tell unless I switch drugs.
 
I don't like switching drugs because it could be involved.  The new drug would need time to take effect, and I have a sleep study planned for January 24th.   I don't want to be in the middle of something when I go to that.
 
Perhaps I could just bump my Zonisamide by 25 mg per day.  That might be low enough to avoid the breathing problems and high enough to avoid the pain and neck stiffness.