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.