The Continuing Saga of my Drug Habits

Here it is Saturday night and I can't have a beer, a glass of wine or a shot of whiskey.   All because of my drug habit.  I'm talking about my Zonisamide of course.  I'm taking 50mg a night and alcohol is contra-indicated.

More Zonisamide gives me something of a breathing problem.  I was on 50mg in the AM with breakfast and 50mg with dinner and I had difficulty catching my breath.   I wonder what the 100mg capsule was doing to my breathing while I slept when I was on that in the evening.

Well, that's water over the dam as they say.  Or is it under the bridge as it were.

Each day I take 50mg of Zonisamide and that seems to resolve the breathing issue.  The headache/neck problem isn't too bad as long as I get plenty of rest.

Which I did today.

The Pulmonologist I saw early in December said that my lungs look great for (A) somebody my age and (B) somebody who has been through the amount of chemo that I have been through.

She thinks that given my symptoms the Zonisamide may have anesthetized my mid brain which controls breathing.  What a little problem that would be.

And since I take my daily dose at night, I should have another sleep study to check to see that it doesn't do that at current dosage.  If the neurologists don't order it, she will. 

Doctor Visits and Continuing Symptoms

I have for some years thought that I had a deviated septum, so Monday I visited an ENT (Ear Nose and Throat Specialist) who put a camera up one nostril after the other (cameras used to be quite cumbersome you might remember) and showed me that my deviated septum is not such a deviant after all.

I just have to wash it out in the prescribed manner.  Buffered saline.  And apply Flonase in another prescribed manner.

I simply had dirty sinuses which apparently leads to sinus problems like the ones I have.  I'll see him in a few months to catch up on how it's working.

Today I visited the a pulmonology lab and doctor's office at the university and the bottom line is my lungs are great, especially considering all the chemotherapy I've been through and my age.  

I have 96% blood oxygenation on the finger meter and it looks like my lungs are getting out 98% of what they take in.  Both are good.

I found out that the blood oxygenation levels I had in my sleep studies were 70% and they should be at least 80%.  But if that problem came solely from Zonisamide and Tizanidine in combination then I should be OK on the next one.

At home I would not have had the benefit of oxygen.  I wonder how much it dipped to here.

I had 25mg of Zonisamide today (so far) and I think I will have 50mg tonight and keep it to 50 at night for a while to see how bad my headaches get.

But I should be able to breathe better.  That's a good thing.

I Caught My Breath

I switched the timing of my Zonisamide capsules such that I take 100mg at night shortly before I go to bed instead of 50mg after breakfast and 50mg with dinner. 

I'm able to breathe better.  It's wonderful. But not perfect.  I'm feeling some pain.

I'm thinking of dropping down to 50mg tonight just to see what happens.  I've done this before and I'll probably feel some neck tension and some pain may creep back into my neck/cervical area.  But my breathing might improve.

It kind of depends on how courageous I feel just before I pop the pill(s). 

Breathe the Air

There is nothing quite so humbling as the sensation of being smothered.  For some reason it is something that I had not given a great deal of thought to, except for the past couple of days, when I've had the feeling more often than not.

After an undisciplined dinner (Double Whopper with Fries) I couldn't sleep at 2:00 AM and the difficulty breathing stayed with me from the night before.

For the rest of the day.

This sense that I can't breathe has come to me virtually every evening since probably September, gradually getting worse.  Instead of an after dinner drink, I simply try to breathe quietly wondering why I don't feel like I'm getting enough air; or not getting my lungs full.

Much like a few years ago when I had a tumor and didn't know it, I try to understand what I have in the moments when it is difficult. In the moments when I'm feeling good I assume rather blithely that my problems are over and I don't have to concern myself with them anymore.

At times, I'm rather short-sighted. 

But in my quieter moments, when I take a breath and it doesn't feel right I might think I have something serious, something that, like the tumor, could kill me if it  got the better of me.

But the moment passes and I'm back to being an optimist; or is that back to being an imbecile?

So, why do I feel like I can't take a good breath?  It could be a number of things but of course I don't know what it really is:

1. GERD ( Gastroesophageal Reflux Disease) this was the number one option until I spent four weeks on Prilosec OTC which did nothing at all for it.  Also doesn't bother me after breakfast or lunch.  Or lying down.  Much like the last time I was incorrectly diagnosed with GERD I had no heartburn or related symptoms that should have been there.
2. This could be a heart/lung problem that has gone undiagnosed.  I will be visiting a Pulmonologist on Wednesday to see about this.  I had a breath test at my doctor's office in October as part of a physical, and an ECG the same day and both were good. I have no problem getting my heart rate up to 140-150 when I exercise, so I don't think I have a coronary artery blockage.
3. Listed side effect of Zonisamide. I think this is the winner; I just do.  This began a few months after starting the drug and got worse as the drug built up in my system. I'd like it to be this option because if it is, then my problem will go away once the drug is changed.

I sent an email to the people at the Headache Institute asking them if they could prescribe another drug without that side effect.  That would be nice.

This all stems from the treatment of some headaches that resulted from a tumor in my neck followed by three months of treatment with Revlimid to prevent recurrence.   The tumor was gone by April 2010 and the Revlimid was done by August 2010. 

But the headaches remained.  I'm taking Zonisamide for the headaches.  It works very well, except that I'm having a problem breathing.  Sometimes.