05/15/09 - I have some fairly significant updates to add. While the surgery that I had nearly 5 years ago is still very effective to this day, some other issues have entered into my sleep equation.

Starting around the summer of '07, I noticed my energy had dropped some. Didn't know why. Just kept going. Summer of '08 and later it was a bit worse, but I was still active. Even went out of the country for the first time ever. Toured Brazil with the locals. Learned to eat better. Have lost 50 lbs since Aug '08. Yes! Could it be related?? Nope! More later.

Then in about December of '08, my energy started to drop significantly. Even went on vacation and that did not help at all! By April '09 I was on a medical leave of absence from work. My energy had taken a serious nose dive. Plus I was only sleeping 3-4 hours since January '09. I wasn't sure which came first. But I remember one day, very suddenly, I just started sleeping only 3-4 hours. Of course I was worried that it was my Apnea creeping back into my life.

I have had blood tests constantly since August of '08. Not much stood out. Although the weight loss had corrected many things that were out of spec, like triglycerides, cholesterol, and A1C (diabetes). The first couple of days after I was on leave from work, I grabbed all of my lab work since August of '08. Looking for trends, the one thing I took for granted was my Thyroid readings. My doctor told me my thyroid was fine. But the numbers told a different story. There was a mild decrease in Thyroid function over the last year. But then the latest blood test in March '09, showed that my Thyroid numbers had maxed out, indicating a low Thyroid. But right next to the numbers was written "Thyroid ok". I immediately went to see a specialist in Endocrinology. He agreed that the Thyroid was low and started me on 25 micrograms of Synthroid. Now, 5 out of 6 of my family members are on Thyroid meds. My doctor missed the call on my Thyroid. With a family history of low Thryoids, she should have spotted the issue in the latest blood test.

Now after 3 weeks on meds, there is some improvement in my energy. Not back to normal yet. My sister is an expert on Thyroids. She told me very clearly that a dysfunctional Thyroid will ruin your sleep! Granted, since being off of work, and before any meds, my sleep had bounced back. So that seems more work stress related. But now my sleep is normal for me, at 6 hours per night.

I should elaborate on last summer. I went to Brazil. Everywhere I looked the folks there were very thin. In the big cities to tiny country towns. Rich or poor, they were all very thin. I noticed very few fat folks. These people looked healthy. Even folks that were probably at least 65 years old, looked great! It was obvious from the meals that we were eating that refined carbs were clearly absent!!! You could find them, but were by and large not part of the diet. To be clear, I'm talking about refined carbs, not carbs in general.

After eating like a horse the 12 days I was in Brazil, I managed to lose at least 1 pound when I got back home. I should have gained several pounds! So I decided to keep up the same eating habits in the US I had experienced in Brazil. Today, I'm 50 lbs lighter than when I returned from Brazil, and 60 lbs lighter from when I had my sleep apnea surgery. All due to removing the refined carbs from my diet. Remember that I had several blood tests since last summer? That was to track my blood not only for fatigue issues, but for the very fast weight loss that ensued. The first month, August '09, I lost 20 lbs. Then 10lbs the next month. Then a few lbs each months since. Weight loss has slowed greatly in April an May of '09. I've started an exercise program this month as well.

Did losing all of this weight help with my fatigue issue? No! It didn't help at all. That was a major bummer. Granted, going up and down stairs was easier, but that was it. That's when finding the low Thyroid made so much sense in explaining where the fatigue came from. My thyroid was partially low for about 2 years, then it finally crashed in March '09. Each month now, I have to have a blood test to look at my thyroid levels. It takes several months to get the dosage right. This info comes from my 3 sisters who have been on meds for their thyroids for many years. I found out my dad has been on thyroid meds since 1971!

The whole idea being all of this detail in this long post is to show that so many things can effect our sleep, and therefore our health. My mantra as a career troubleshooter, is to measure everything and assume nothing. That attitude is why I was able to spot my thyroid data going bad, even though my doctor said it was ok. So keep copies of all of your apnea tests and blood work over the years. You never know when it will be handy. I keep all 6 of my Stanford sleep studies and blood work in a folder. BTW, even the Standford crew miss read my last sleep study. They said the results were not good. My sleep and REM are quite remarkable since then. Even the masters can screw up!

Mike

PS, So far my Somnomed MAS dental appliance is holding up fine, when I have to use it. I still breathe very nicely without it!

05/25/08 - Back in March of 2007 I had to have additional surgery to remove an infected titanium screw in the lower jaw. I insisted that they remove the uninfected one as well, and they did. So far everything a year later is fine. The new Somnomed MAS dental appliance is doing ok. Still needs a bit of adjustment. Seems very sturdy. My TAP2 just wore out after 3+ years, but always did it's job very well!

11/19/06 - It looks like my updates are almost yearly :)

Some significant info. I sleep generally 4.5 to 5.5 hours per night since the surgery in Sept 2004, without waking up at all. Going to sleep was reduced to only 10 minutes. This happened when my breathing was corrected by surgery, but due mostly to my dental appliance. To recap, the surgery made for zero apnea episodes in the last sleep study, but ended up with hypopneas instead. So that means I went from not breathing periodically to breathing that just has some reduced flow. That is an improvement. The dental appliance was by far the most effective. Another overnight sleep study with the dental appliance will show how much it helps.

But since my last visit here I'm stuck with about 5 hours of sleep per night. It's very high quality, just not enough! So I went for the second time to the Stanford Insomnia group for help. The first trip through the course in 2003 I learned how incredibly valuable and effective light therapy was on my energy and sleep cycle.

This second round in the Insomnia Group, the Doc has me working on sleeping longer via several steps of therapy and after watching my sleep logs for several weeks. It's been very helpful to keep a sleep log every week to see exactly how I am doing. The first thing the Doc does is squeeze the awake time out of our sleep time. She literally makes us sleep less for one or two weeks based on how much time we are awake during the night. It makes a person more tired, but it trains the brain to know that when I'm in bed, I better be sleeping! It works very well. Since my sleep has had zero wakeup time in it already, she had me bypass the squeeze step and make sure I get up the same time every morning at 6am, 7 days per week. Ouch. Sunday at 6am? Yup! It's working.

This past week for the first time I have slept from 11:30 all the way through to 6am 3 of the past 5 days, and until 5:30am 2 of the past 5 days. Since my sleep efficiency is mostly over 90% this past week, I am allowed to move the alarm from 6 am to 6:15am and track if I can actually sleep that long. That's what I did this morning. If I can sleep to 6:15am, then the alarm will get moved to 6:30 for a week, etc.

It appears from several of the last few January crashes that I have SAD (Seasonal Affective Disorder) per the Stanford Sleep Clinic. So the Doc gave me a prescription of light treatment. 20 minutes with the light box sometime between 6 and 7am. And then again, 20 minutes at about 6:30 pm. Plus she wants to get an hour per day of sunlight! This will make my brain think that the daylight hours are longer since the sun sets at 5pm here. I also make sure my home is well lighted in the evening. I borrowed the Doc's Golite P2 for additional light for a week. Then bought my own at Costco.com. They had the best price. It's portable so I can take my treatment anywhere I am at 6:30pm. All of this work will hopefully stop the SAD.

One thing that happened to me is that having Apnea for so long trains the brain to believe that sleep is a threatening environment and that beds are not a nice place to be. So the brain creates anxiety before bedtime and during sleep even after getting surgery and a dental appliance. So it takes time to "heal". I wanted to heal sooner so I signed up with the Sleep Clinic' Insomnia Group again for a more accurate treatment, instead of unsuccessful self diagnosis and treatment.

The miles stones look like this. Dental appliance, surgery, Ambien removal, Prilosec removal, sleep cycle modification, SAD light treatment.

Did I mention that I rarely have reflux episodes any more!! Maybe a couple times per year instead of a couple times weekly? Good nighttime breathing fixed the reflux too!

Warning, political statements ahead!

The HMO's were zero help in all of this! It was because of them that it has taken 14 years to get this far. I've lost way over $100,000 in lost wages. That would have paid for all of this treatment years ago! So, ask yourself if waiting for the HMO to help you is really helping you at all. If you can support yourself and keep working then you just lose time waiting for their decisions, authorizations and guesses at treatments. If you go down the path I went down, it can cost you money and nearly your home.

One person I know was agonizing over paying $1500 or $2500 for a dental appliance. She can only work less than 20 hours per week now. I told her she is losing more in wages than the stupid dental appliance will ever cost! We'll see how she does.

Whew, that felt better!

09/16/04 - Man, what a night of dreams. Does being held against your will by gangsters qualify for a nightmare? I haven't had a nightmare since 1968. Of course I lived the apnea nightmare instead.

I thought yesterdays dreams were noteworthy. Today the realism went from visually incredible to tactile. In other words feeling the pushing, shoving, and grabbing was mind blowing. Even during the dream I was suprised by the feel of the characters. Some guy pinned me to the ground by sitting on the side of my head. I should go back in there and kick his ass :)

I wonder if this is enhanced by the drugs. Although I'm off the anti-inflammatory, stool, and pain meds. Hmm. Just the antibiotic and Prilosec remains. I have noticed that the GI problems have fully returned that I had before surgery. This I need to go in for.

Being so vivid, I wonder if there are diminshing returns on that type of "THX"/"Dolby"/"DTX" kind of dream? I did wake up once for at least 1/2 hour between "movies".

Pain is steady in the lower jaw. The doc said the numbness in the lower teeth, gums and lip should go away in 6-12 months. I interpet that as permanent. Sigh.... Heard from most of the family yesterday as well. The post surgery support helps alot. I didn't think I'd need any. Silly me. I ate my first solid food yesterday. A Marie Calendars TV dinner, and a pot pie. The challenge is that I can't feel the food get stuck around the front of the lower teeth. So I have to make sure and swish liquid as I eat to get it all down. Swallowing pain has decreased greatly. I can open my jaw about 2 finger thicknesses now. Weight is at minus 14.5lbs this morning. Suprising after all I ate.

09/15/04 - This morning's sleep was very good. I remember waking up once, but went back to sleep. After that I had another Speilberg production of a dream. Long and detailed. This gives me hope and confidence that the surgery is doing well. Although I did wake up a bit tired. Maybe the dream was too exciting. I seem to always dream action/adventure. Soreness was minor when I woke. I have been rinsing after meals as I can't feel if there is embedded food.

I wish there was a home system that would track rem and other sleep parameters. Something small and wireless :). O2 sensors are now very common. Maybe more advanced electronics will follow. Since I have to find a job anyway....hmmmmm.

Yesterday was a landmark day as well. I drove the car across town. Clear headed and confident. So then when I got back I grabbed the motorcycle and went exporing a long road that leads to an observatory. Had to turn around as it was getting cold and I was unpreppared. Got up to about 3000ft and got to see the whole valley where I live. That was neat. Made me feel very good that I am mobile and self sufficient. Poor motorcycle leaked oil like a seive. Better fix that.

Most drugs will run out soon. The anti-inflammatory was done this morning.

PS I can now type things like this with out spending incredible amounts of time editing it due to drugs :)

09/13/04 - I just bought some ice cream because I wanted some! No limits on my diet as far as I know.

This morning I am down 15 lbs since Tuesday. I can eat without spooning most of the time.

I was able to get to bed late at 1am without taking any narcotic pain meds, just 4 Tylenol capsules. I had dreams that I could actually remember! yay! I danced in the living room this morning!! Maybe the pain meds are causing the late night awakeness. So it would seem there is some benefit to the surgery at this early, swollen stage. Still can't feel the 4 lower middle teeth and gums. Hmmm. But the lower lip feeling is coming back.

Well, got to go try some new, hot, gourmet baby food....

09/12/04 - Here are the drugs I'm on due to surgery.
Clindamycin - Antibiotic
Prednisolone (Medrol dosepack) - anti-inflammatory
Docusate Sodium - stool softener

I'm on Prilosec for reflux the past 11 months as well. This has to get looked at as soon as I can.

Yum, I had mashed potatoes and gravey today from KFC! Friends came over and took me grocery shopping as well.

From 9 am to noon I was in bad shape. Very emotional and sick. I have everyone calling me daily. I need the support :)

After breakfast, I was down another 2 lbs, totalling minus 12 so far.

09/11/04 - So far I don't sleep long each of the past few nights. It feels like the meds are waking me up. A couple naps a day are working to help the fatigue. The meds all seem to contribute to their workload of keeping me healing. Today my uvula/pallette stitches are feeling their best so far this week. They hurt the worst when tying to eat. I actually could take in hot instant oatmeal and some 4 bean salad from the deli today. Otherwise it's nothing but jello and fruit smoothies. Not a bad diet. Just lacking in calories. I get hungry alot. Body functions seem to be doing great now as well. General aches are with me all day. I'm down 10lbs since Tuesday. Not quite speedo material ;). My chin is swollen as one might expect. The work below my front teeth is what hurts the most consistantly during the day/night.

Part of recovery is not just people watching over me, but supervision too. I was stupid today and drove to a couple errands after my sister left. Three close calls driving due to the brain being behind. Bad call on my part. I was just trying to do a little something extra so as not to feel so incapable. Even worked on the motorcycle and idled it around the driveway in a victory lap!! I need to invest in videos, they are safer!!

My great sister Leah was out here all week from Denver to take care of me. That sure was nice of her! She went home today.

It's very interesting to experiment with my sleep during the night. Since I can't sleep, I try the "acid" test by sleeping on my back often. The only thing that gets in the way is lots of excess saliva from the surgerys. This test will be the most important outcome for me. I have to lay on my side with a towel to catch the saliva so it doesn't cause me to wake up from it blocking my swollen airway. So far it helps. Plus keeping my head elevated is very important. Blood rushing into my head and mouth hurt badly right now. I need to elevate the head of the bead with something.

If I wander in my writing please forgive.

09/09/04 - I survived. Jello is getting old. The soft pallet is very sore. Stops me from eating solids for a while. Still taking pain meds 4 times a day for headache and general throat pain.

The surgeon has given me the RF probe that was used on the back of my tongue. He also took digital pics of the bone work. I'll get a copy later. My sister and I took before pics. He experimented with adding a shim, some how, for more tongue advancement. It looks like I received 20 mm of movement. That's .8", Whew!

Time to go sit down.

09/06/04 - I will try and keep a journal, but I may not be in the mood! LOL.

My TAP2 has it's mechanism in the center. So I am not sure what the dentist meant. Nothing touches my cheeks. Maybe the TAP1 had the feature?

I am glad you are adjusting so fast. If they are molded right they fit great.

Dream on !!

09/05/04 - It's been 12 long years ago that I started this fight for sleep apnea treatment. Gaining 60 lbs is what finally made my "numbers" bad enough for the insurance company to authorize surgery, even though I had been diagnosed years ago. So on Tuesday Sept 7th, I go under the knife, saw, zapper, or whatever. I hope they use a Titanium screw for the tongue advancement ;) I will be knocked out with general anesthesia. Recovery is several weeks. I hope I can be ready for Nationals, after all we are the United States Middleweight Combat Robotics Champions and have a title to defend, even if it's from a wheelchair!!

Here is a great website from the doctors that invented the three surgery's that I'm about to have at Stanford. It has great diagrams of what stuff they modify in my mouth and throat.

Tongue Advancement
RF procedure

One of these other two procedures below is the third part of the surgery, I just don't know which one they will choose.

Upper Pallete
OR
Uvuloplasty

Wish me luck!!