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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: Sleep Disorder Specialist

First Impressions of Last Night’s Sleep Study

Day by Day with a Movement Disorder Posted on November 7, 2007 by DBNovember 7, 2007 2

I spent the night at the Sleep Study’s Research Center last night. The room was luxurious, and since I cannot sleep on a flat bed, I specifically requested the one room they have that has a Tempurpedic type mattress on an adjustable bed. I have been interested in this type of bed for several years, thinking I might be able to get back into the bedroom with hubby, if we had one of those King size adjustable beds with the split. That way I could set my side for a recliner like position, while hubby could sleep flat. It’s been years since we have slept together, and I would love to be able to have that closeness again.

Well, to say the least, I was disappointed with the bed. I tossed and turned all night, trying to find a position that would not make my back spasm. I ended up sleeping in this hole where my bottom was. I had just as much trouble with back spasms all night long as I do on a flat bed or the hospital bed I slept on for the first Sleep Study. I am glad I had the opportunity to try out this type of mattress and bed, as they cost up in the 3 to 5 thousand dollar range. It would have been terrible to have spent all that money and not be able to sleep comfortably.

As for the Sleep Study itself, I used the TAP dental appliance set to the easy setting I’ve been using ever since my neck muscles started spasms. I was hopeful that this smaller amount of forward movement of my jaw would be sufficient to stop the apnea. From his preliminary review of last night’s data, my Sleep Disorder Specialist was very encouraged that the TAP is working just fine for me. He also agreed with me that my daytime sleepiness is from the PD meds, not from any underlying medical issue. This is the best possible news for me. He also said he would be glad to help with the documentation to help me to get Blue Cross/Blue Shield to reimburse us for 80% of the $1000 we spent up front on the TAP.

So, with my sore back and scalp full of gooey glue, I am happy. I fought the good fight to get used to the CPAP masks, and failed. I kept adjusting the lower jaw advancement on the TAM, until I put my whole neck muscles into painful spasms. Then, because of the pain, I backed off by several turns of the key. And it paid off, as I have evidently been able to get the apnea controlled at a comfortable setting.

Today is a GOOD day!!

Posted in Uncategorized | Tagged C-PAP, dental appliance, hospital bed, insomnia, muscle spasms, Parkinson's, Quality of Life, Sleep Apnea, Sleep Disorder Specialist, Sleep Study | 2 Replies

Update on Dental Appliance for Sleep Apnea

Day by Day with a Movement Disorder Posted on October 11, 2007 by DBOctober 11, 2007 4

I’ve been wearing the TAP device for the last three nights, and thought I’d better let you know what I think of it. All in all I’m very pleased. It’s certainly easier for me than trying to get used to the CPAP mask was. I would be lying if I said it is comfortable, but it’s not painful and I am pretty sure I will eventually wear it without particularly noticing it. I guess it’s about like wearing glasses for the first time.

There are a few things that have to be part of my routine now, because of the dental appliance. It is absolutely a must that I brush my teeth every night, something I’ve never really had a consistent habit about, hanging my head in shame, as I usually fall asleep in the recliner while watching TV. If I don’t, I’m just asking for a bunch of cavities. Also, I have to brush the mouth pieces every morning when I brush my teeth, and leave them out to dry thoroughly.

The big change is that there are two small pieces of pliable plastic that I have to stick in between my teeth at the corners of my mouth every morning to chew on for awhile. The idea is that the TAP pulls the lower jaw forward for sleeping, so in the morning, I have to move my lower jaw back into it’s normal position, so my bite will be correct. It’s kind of like chewing gum, I guess, but there’s no taste. It’s not hard to do, but it’s absolutely necessary. It’s supposed to strengthen my jaw muscles, too, which will be a good Parkinson’s exercise. PWP lose the ability to control their facial muscles eventually, so this should help me forestall the expressionless Parkinson’s Mask, as it’s called.

I haven’t made any turns on the device yet, so I’m still wearing it at the first setting, which has my upper and lower teeth meeting in the front. Now, for some of you, they already do that to begin with, but I have a noticeable overbite. That overbite is one of the main reasons my Sleep Disorder doctor thinks this dental appliance will stop my Sleep Apnea. I figure I’m going to be wearing this thing the rest of my life, so what’s the rush. I want to get used to it first, before I start cranking my jaw out any further, particularly since it’s already set to move my lower jaw out a good bit just to make my front teeth meet.

As far as my sleeping goes, I haven’t been doing much of that. I don’t really think it’s because of the dental appliance, though. I’ve taken Lunesta two nights now, and still didn’t sleep more than three or four hours. I made it to five hours last night, without a sleeping pill, which is the best this week. I’ve never found a sleeping pill that really worked well enough on me to justify taking it, so I can’t say I’m surprised the Lunesta didn’t help.

I’ve been pretty upset with other things that have been going on with my Parkinson’s right now, and I think that’s cutting into my sleep. Also, I’m on several more PD meds since my ER visit, and they may be making the insomnia worse. And, even with the extra meds, I’m still wobbly, although nowhere near as bad as I was before I went to the ER.

I am having some spells of being extremely spacey and unsteady, which pass after about an hour or so, usually right after meals. I’m guessing it’s the combination of all the PD meds I’m on right now, but my Neurologist will straighten that out for sure. I have them all spread out as best I could, so I’m taking something about every hour or two all day long.

I see my Neurologist tomorrow, and I’m very hopeful that he can sort out what needs to be done to help the insomnia and also give my Gastroenterologist some suggestions about medicines I can take to calm the colon spasms. He may have to change some of my PD meds, so that I can take an antidepressant, as that is the class of drugs that the colon relaxing medicines fall in. Oh, I forget to mention that I stopped taking the St. John’s Wort after the first day, as the more I read I realized it was in the category of an antidepressant, and I can’t take those right now.

So I’ll spend today looking forward to tomorrow and some answers, I hope!

Posted in Uncategorized | Tagged antidepressant, C-PAP, confusion, dental appliance, depression, difficulty walking, drug interaction, Gastroenterologist, insomnia, Neurologist, Parkinson's, Sleep Apnea, Sleep Disorder Specialist | 4 Replies

Impressions are Made

Day by Day with a Movement Disorder Posted on September 20, 2007 by DBAugust 14, 2019 6

I went on a feverish research marathon on the internet night before last, and printed out a bunch of pages of different dental appliances for sleep apnea. I also found several pages explaining exactly how to talk to my Blue Cross insurance people in order to have a fighting chance of getting this thing covered by my medical insurance. This sort of appliance does not fall under dental, as it really has nothing at all to do with the teeth. I printed a list of possible side effects, too, just in case I had any problems. Troubles are always easier to cope with for me, if I know I’m not the only one having them.

So, armed with all my paperwork, I went to my own dentist yesterday and had a long talk with him. I really like him, and have been going to him for many years. In fact, he has crowned almost every tooth in my head! LOL That’s just as well, too, as this appliance would not work if my teeth were not strong and in good condition. But, I digress. I was pleased with what he told me about how he did this process, but even more pleased when he brought my very own hygienist in to talk to me. It seems that she uses the very appliance that he was recommending! She explained that she could move her mouth around with it on, and that was something I was particularly concerned about.

She also told me about the exercises you have to do each morning when you take it out. If you don’t do that, you will pull your bite all out of alignment, not to mention have a lot of jaw pain. That’s not a problem, as I have to “exercise” my face muscles every day anyway, as part of my Parkinson’s exercises. These are designed to forestall the mask look of PWP. We lose the ability to use the fine muscles that control facial expression, and these exercises are supposed to prevent that. I don’t know if they will, but I intend to try, anyway. So, adding in some jaw and mouth exercises will be easy enough.

So, I did it. I had the impressions made and paid out 1,000 big bucks right there on the spot. That’s not cheap, by any means, and it certainly means I’d better be right about this one!! If you thought I was stubborn about trying to get used to the CPAP, just wait and see how stubborn I can be with that much of my own money invested in it! LOL I really feel like this is something I need to solve the insomnia and resultant brain fog I deal with every day now.

Of course, I will do everything I can to get reimbursed by my insurance company, but I had already decided I would do it, covered or not. I did call the insurance company yesterday to find out what forms I needed to get this approved, and then my Sleep Disorder doctor’s office to ask them to get Dr. A to fill them out. So I’ve started the ball rolling, anyway. I made sure I got the medical code for this appliance from the dentist’s office, too, so I could use that in my argument for coverage, if needed. I would not have known to do any of this if it hadn’t been for a dentist somewhere in California, of all places, who had a whole page explaining exactly what to do to get this appliance covered. Ain’t the internet great?

While I’m waiting the three weeks it will take to get this in, I’ll work to get the skin around my mouth back in good shape. Those masks have really done a number on my Acne Rosacea, with dry irritated patches all along my mouth on both sides down to my chin and across. My skin usually takes awhile to heal, once I get this irritated. I quit wearing makeup years ago, because everything broke me out, and I have to be very careful about any soaps or medicines I use on my face. That alone made me a poor candidate for cpap. Adding in the degenerated disks, which required that I be able to move around in my sleep, and I hope I can make a good case that using this “custom fabricated device” is a “medical necessity,” as the insurance company requires. Both of those conditions are documented in my medical records, so I think they have a fight on their hands if they try to deny this claim. I’m loaded for bear, and ready to take them on, but, hopefully, they will agree and I won’t need to fight them. I really don’t need that extra stress. But, what will be, will be.

Getting rid of the cpap frustration and looking forward to getting the dental appliance has improved my mood considerably, so I remain positive that everything will work out for the best. I do covet your prayers and good thoughts that I will find adjusting to the mouth piece to be an easy transition.

The device I’m getting is called a TAP, which stands for Thornton Adjustable Positioner, and you can read all about it here and here, if you’re interested.

Posted in Uncategorized | Tagged brain fog, C-PAP, dental appliance, dentist, facial exercises, insomnia, insurance, Parkinson's, prayer, Quality of Life, Sleep Apnea, Sleep Disorder Specialist | 6 Replies

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