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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: sleepiness

Improving My Circadian Rhythm

Day by Day with a Movement Disorder Posted on November 7, 2017 by DBJanuary 24, 2018 2

I’ve learned a lot in The Energy Blueprint* about improving my Circadian Rhythm. (There are several introductory videos that are free, if you are interested in learning more about this program.) The program has several lengthy discussions on the benefits and issues with different light frequencies. The author, Ari Whitten, shares lots of scientific studies to back up his strategies. I certainly don’t understand all of what I’ve seen, but I have successfully used several of his suggested strategies.

Sleep Strategies

It didn’t take a program to tell me that improving my Circadian Rhythm was a top priority! I wasn’t sleeping much at all after my last sinus surgery. I was on high steroid doses for a month, so sleeping more than a few hours a night was unusual.

So I started implementing strategies from the Energy Blueprint. I bought the blue blocker glasses to limit the blue light frequencies for several hours before bed. That way the lights in the house, and especially the TV light and computer light, were not signalling my brain that it was still daylight. I stopped using the computer and Kindle after 7PM. I bought room darkening drapes to get the room darker for sleep. And I’ve covered up with black electrical tape all the little blue lights that are all over the house. I bought a red light bulb to use as a night light in the bathroom. And we now use red light flashlights to navigate in the pitch black house to use the bathroom during the night. The red light does not stimulate the brain to think it’s time to get up. It’s more like the firelight our ancestors used at night.

Backsliding

I saw a dramatic improvement in my sleep habits for quite a while after working on improving my Circadian Rhythm. But I’m sorry to say I’ve gone back to the old habit of waking up to go to the bathroom. That’s a problem for me, because I can’t get back to sleep.. At least I have more of an arsenal of weapons to get this terrible habit stopped again. I’m taking a Benadryl at night to help temporarily (NOT part of the EB program!), and I’ve increased my daytime activity level as much as my muscles will allow at this time.

I think part of the return of the problem is that it is getting harder to find a day when I can sunbathe. It’s now either too cloudy or too chilly on more days than not. So I’m using the RubyLux infra-red lamps in my make-shift sauna to try and make up for it. It’s obviously not working as well as the natural sunlight in improving my Circadian Rhythm and increasing my mitochondrial energy, but it’s better than nothing. The best way to accomplish this would be to use an infra-red sauna – but that’s out of our price range.

Seasonal Changes

I’m also using a 10,000 lux full spectrum light therapy box I bought on Amazon in the mornings now, even if I go outside and walk in the morning. Too often lately the sky has been so cloudy that I know I’m not getting enough of the blue light that signals, “It’s Daytime!” to my brain. And then the clock change hasn’t helped things, either. I’m struggling to stay awake at night until a decent bedtime, and that’s causing me to wake up earlier than I should.

Improving My Circadian Rhythm

So I’ve kind of made two steps forward and one step backwards when it comes to improving my Circadian Rhythm. I’ll continue to add more of the EB strategies and hopefully get more of the many benefits of better sleep.

Posted in Quality of Life | Tagged blue light, Circadian Rhyrhm, infra-red, sleep, sleepiness | 2 Replies

I’m Jerking Less, But Walking on Jello

Day by Day with a Movement Disorder Posted on November 20, 2010 by DBMay 17, 2016 2

I have not jerked as much yesterday and today, but I can certainly tell I’m on a new med. I’ve been sleeping much more and much more deeply. That’s not necessarily a bad thing, and will probably become less pronounced as my body adjusts to the Neurontin. My legs, however, have been much less dependable. It’s hard to say if I’m shaking more, losing my balance, or if my legs are just weaker, but whatever is going on … I’m definitely having some difficulty walking. I have that walking on Jello feeling again, and I haven’t felt like that in a long time.

But I’ve only been on the Neurontin for 4 days now, so let’s hope these are side effects that will subside. I should find out the MRI and blood test results Monday hopefully. I don’t expect them to show anything, but it will still be good to have the results. Patient? Me? Not hardly!

Posted in Medicines and Supplements | Tagged difficulty walking, MRI, Neurontin, side effects, sleepiness | 2 Replies

Blood Sugar Aggravation Grrrrrrrrrrrrrrr!

Day by Day with a Movement Disorder Posted on June 30, 2009 by DBMay 21, 2016 2

Constant aggravation is how I’m feeling these days. There have been way too many days this month when my blood glucose level was higher than my doctor wants it to be, and with only a few obvious exceptions, I have absolutely no idea why.

I was scheduled for an appointment with him at the end of July, but I changed the appointment to this week.

I’m trying to read through the Atkins book for Diabetics, but it’s very detailed and is slow reading. It’s extremely well written, but I am taking it in in small increments. I’ve read quite a bit of what is presented from other sources, but this book seems to put all the puzzle pieces together quite well. I’m really not finding anything that I am currently doing incorrectly, so I don’t understand why I still keep getting so many high readings.

My biggest problem with reading something this involved is that I keep falling asleep. I plan to ask my Diabetic doctor if one of the meds he put me on causes daytime sleepiness, because that has been a real problem for me for some time now. I’m sleeping soundly all night long now, so it’s not because of insomnia that I’m falling asleep so easily. I feel like I need to apologize to our preacher, as I nod off during almost every sermon! LOL!!

I’ve been trying to “get a life”, too, and not spending as much time on the computer. There’s this book that I’m very interested in learning as much as possible from, plus we are both trying to learn how to sing Sacred Harp shape note music. And I’ve gone back to working Sudoku puzzles, as I felt my brain needed more stimulation. Now that the television is all digital we have lost some of the stations we used to watch, so we have more time for other endeavors.

I continue to lose weight slowly but surely, and it’s beginning to show up with clothes that are too loose. That’s encouraging. At the rate I’m going I could possibly lose 50 pounds by the end of this year! I’m doing pretty well at resisting sweets, enjoying fruit instead. And we continue to emphasize low carbohydrates in our diet where possible. Hubby’s losing weight, too!

So, I’ll continue to read my book, exercise daily, and watch what I eat. Hopefully he can tell me what else I need to do to stop all the high test readings and possibly make a prescription change that will help me stay awake.

Posted in Type II Diabetes | Tagged Atkins, brain fog, low carbohydrates, Sacred Harp, sleepiness, Sudoku, weight loss | 2 Replies

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