Hey, gang. Y’know how I’ve been worried about my own problems with memory, especially since three of my four grandparents experienced their own dementia? And my tremors are now pretty noticeable? Well, all’s clear, at least for now.

I had the 4 hour cognitive test – I actually had fun with it. Those results basically said that each part of my brain was working fine, but they weren’t very good at playing together. So we needed to find out why they were such a dysfunctional family. Next stop: a sleep study and a nap study.

Those results were really enlightening and not just for recent issues. (In college, one of my friends referred to me as “drifty.”) I really am not getting enough sleep, but most of it is not because of Mom. Turns out I have a sleep apnea. I’m to see a sleep dentist (no, that doesn’t mean anesthesia). He specializes in oral problems that interfere with breathing. He will make me a device that will help me breathe better when I sleep. I’m thrilled that I don’t need a C-PAP mask. I wouldn't have worn it anyway. My brain cells should start cooperating in the near future.

But that still only partially explained, and doesn’t remedy, all of the memory issues and related things I was dealing with at work. The sleep doc was going to prescribe Ridalin, but heart medication I take would not sit well with that. So he gave me a sample of Nuvagil and I have to tell you it is making a HUGE difference. Life is so much better. I haven’t walked into a room without knowing why more than once since I started taking this med on Tuesday.

Moral of the story: don’t panic. Dementia is not the only explanation for memory problems – not even if you have tremors in your hands, arms and legs. Combining the loss of sleep from when Mom was at home, plus the apnea, it’s no wonder why I was so “not there.”

Thanks for all of the advice and support through this. I’m not expecting my (or my memory’s) demise any time soon.

Kate

Have any of you seen this video on YouTube? It’s great. http://www.youtube.com/watch_popup?v=HzSaoN2LdfU

So glad you got an answer! I've heard this many times before -- that undiagnosed sleep apnea has been going on for decades, and finally it got diagnosed and treated such that the person feels less fatigue and more alert.

Good to hear the Nuvigil is working for you. Ritalin and Provigil also work for those in our local support group dealing with sleep apnea. And most wear a cpap or bipap mask.

So glad to hear you got to the bottom of this. Take care,
Ger xx

Wow - that is great news Kate!

Kate, I have sleep apnea, too! I long suspected it but have recently been recording myself while I sleep using my MP3. The first night, my breathing was even and regular all night and I was thrilled. I didn't even snore!! The next two times I had tons of apneic episodes lasting anywhere from 5 to 40 seconds. [Of course, I don't listen to the full five hours I recorded but sample it at intervals]. It only occurs with me on exhalation and my mouth is usually closed at the time and even when I'm on my side. My daughter gave me a CPAP setup that she was supposed to be using [but won't] and I tried it on once and decided I couldn't tolerate it.

I'll be interested to find out how your dental appliance works for you. I'm going to try to lose ten pounds--maybe that will make a difference but an ENT told me a few years ago that I have an abnormally narrow nasopharynx so that might be part of the problem.

Great news Kate…

….i have Obstructive Sleep apnea also…..
when I use my CPAP…..it works!
it is such a pain….but….It makes a tremendous difference…worth the effort if there is any way you can do it…..
for me combined with Clozasipam and Melatonin….I can get a restful sleep…..also combined with a workout provided by Provigil in the daytime….
I am excited for you….definitely try to correct the sleep apnea…..give it a good try….

Kate….I don't have good alignment of my lower jaw….let me know how this works out for you…..
I have been tempted to try one of those OTC models…..heat and mold mouthpiece….

Pat….
it would seem that just trying someone else's CPAP would give you an idea of how it works…..
I know you probably know all this…..because of your career…..but, thought I would put this out there anyway….

There are many different styles of face mask or ways to get that air into your nose…from full face mask, to just over the nose….to tubes into the nose from a soft nose pillow…..

…..the biggest problem for me was the air pressure….on my unit it is not adjustable for the user….
the first four years I fought using it on and off….never could make a full night with it…..
I would wake up fighting the air pressure….
but did rest better with it….
the biggest problem was the air pressure had originally been set at twice the amount that eventually Mayo Clinic set it at….
think about that…..
twice the air being rammed down my airway…..constantly…..
definitely need…..a great technician to adjust the air properly……to get a good test….
and finally I got used to wearing it….after a few different style masks….
it is a difficult job to get it all right….

Kate, I am thrilled for you, and I am so glad you popped on to tell us! I've been wondering how this story came out. I'll be interested in the oral applicance outcome, too.

My own journey to solve excessive daytime drowsiness (and sleep attacks!) has been going on about 2 years. Tonight I brought home a cpap machine. I don't know whether that will solve it, but I feel more confident about this diagnosis, having seen the results of an overnight and daytime study.

I am determined to get used to the mask and wear it. In my case the incidence of full apnea is slight but the airways close almost completely and make be fight for breath frequently. A dental appliance was not recommended in this situation. I tried on three masks and chose the least cumbersome one.

We'll see. Maybe we can all compare notes.

BTW, early in the quest I saw a psychiatrist who is treating me for depression. The depression symptoms have subsided, but not the daytime sleepiness. I'm beginning to wonder if we were treating the wrong end of things. If you haven't had a good night's sleep in over 8 months, do you think you might start to feel depressed and behave a little strangely?

When I was reading the risk factors, I was thinking, HUH?? Male? I'm female. Overweight? Not really. I don't smoke or drink. No daytime sleepiness here but I know I don't usually sleep well. This has been going on with me for years, I know, because I often wake up trying desperately to exhale and my throat is stuck shut. But I thought I'd verify it by recording and maybe try to do something about it.

I'm anxious to see how all of you do with your various remedies.

And, Kate, I'm delighted to hear you don't have dementia. I didn't think you did, anyway.

Thanks, all.

I'm relieved I don't have dementia, too, Pat. The neuro did cover himself by saying I don't have it now.

Jeanne, I don't see the sleep dentist until mid-January. That seems a long way off, but it's a good thing. The medical insurance I have right now, according to his office, won't cover the appliance. The U, however, has dumped all of the insurance options we've had previously and it seems, again according to the dentist's office, that the new insurance will!

Kate

The results of the first night on the cpap were amazing! I was awake the next day. I hadn't realized how infrequently that happens and how bad my situation had gotten until I felt that contrast. Wow!

The subsequent days were not that dramatic, but still definitely an improvement.

Not getting quality sleep when I am asleep is only one part of the problem. The other is Delayed Sleep Phase Disorder. My body thinks it should start shutting down for the night about 2 am. Which would be OK if I could sleep until 10 or so. Fat chance! So in addition to poor quality sleep, I'm simply not getting enough.

Tomorrow I start therapy for the DSPD. Wish me luck, please.

Hope your treatments are a success, Jeanne! Keep us posted [maybe we should move this topic to a separate, non-Lewy thread?]

I never had the problem of daytime drowsiness unless I only had, say, three hours of sleep. My recent recordings of sleep with my MP3 have been varied. Some nights I have zero apnea and some nights a lot, so I've been doing some experiments. Last night I took guaifenesin before going to bed and my five-hour recording showed no apnea in the random sampling. So I'm going to see if that might be a solution for me. My sinus doctor years ago put me on guaifenesin on a regular basis but I had stopped taking it. At least it has no significant known side effects and is easy to find OTC.

I'm having another great mood day (even though it started with waking my son to help me get Coy up after a fall). I'm through the collecting baseline data stage and I'm now into the treatment plan for DSPD. The therapist warned me that things might get worse before they get better, and I sure didn't notice any improvement the first couple of days. But today gives me hope.

Kate, have you seen the dentist yet?