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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: half-life

Clonazepam Is NOT for Me

Day by Day with a Movement Disorder Posted on April 9, 2016 by DBMay 10, 2016 2

Titrating Off Clonazepam

Last time I wrote I was still slowly ramping up the Clonazepam dosage, hoping to get some pain relief and help with my hyper emotions. Well, it did calm down the startle reflex and extreme frustration and irritability I was experiencing, but it did NOT help with the muscle spasms. In fact it made my muscles so weak that I’ve been doing a lot of shuffling of late, either because I could not lift my feet, or due to the fear I would fall again, if I did pick up my foot in mid spasm.

So now I am working on titrating back off of the Clonazepam. Even when I was up to three .5mg  pills a day, I did not get any pain relief, so it just wasn’t worth it.

I’m down to .5mg at night, but not taking any during the day. Yesterday was horrible, with legs so weak and painful it was all I could do to get up from the chair, but today is better.

I don’t plan on going back on the Methocarbamol and Neurontin until I’ve given plenty of time for the Clonazepam to be out of my system. They didn’t help much, and made the brain fog worse, but it looks like they are still the best meds I have available. The half life of this benzo compound is like 60 hours, so it takes a looooong time to rid the system of it completely. That long half life is great for smoothing out anxiety issues, not so great when it makes the muscle weakness worse.

Another Diagnosis Anniversary

Another birthday has come and gone, making this my 10th year with some kind of movement disorder diagnosis, not counting all those years when doctors dismissed me as just a whiny hypochondriac female LOL. Initially it was thought to be Parkinson’s, but was eventually conclusively diagnosed as Mitochondrial Myopathy.

I’m basically my own doctor at this point. No new research findings in the years I’ve known what was wrong, so it’s left to me to try various nutrition programs and what I think might be helpful in the way of meds – with my Neuro’s approval, of course.

At my last appointment, my Neurologist broached the subject of me eventually being fitted with some kind of AFO braces to support my legs better, as my age is beginning to work against me. Exercise intolerance is one of the hallmarks of this disease, so I have to strike a balance between not moving enough (trying to keep from hurting) and moving too much (which damages muscle cells and does more harm than good).

So I thank God for the better day I’m having today, and continue to do what I can to improve my quality of life.

Praising God, from whom all blessing flow!!!

Posted in Medicines and Supplements, MITO | Tagged Clonazepam, God, half-life, Methocarbamol, MITO, Mitochondrial Myopathy, muscle spasms, Neurontin, pain, weakness | 2 Replies

Half-Life, What Is It?

Day by Day with a Movement Disorder Posted on February 2, 2011 by DBMay 17, 2016 12

I’ve been on the twice a day dose of Lamotrigine now for about 2 weeks, and hubby and I see some improvement, with less jerking and less depression. As this medicine builds up in my system, thanks to its half-life, I can hope for even better control of the jerks and an even happier outlook in general.

Lamotrigine has a half-life of 13 hours. That means half of the 7AM dose is still in my system when I take my 7PM pill. And half of what is left in my system at night from the 7AM dose, plus half of the 7PM dose, is still in my system at 7AM the next morning when I take another dose. Confusing?? LOL!

What that means is that over a period of time it builds up in my system. The Primidone I take does the same thing. My brain is constantly bathed with these chemicals that somehow calm the erratic electrical activity that sets my muscles to jerking. Neurologists don’t really understand the mechanism by which these chemicals work in the brain, so they just have to keep trying different meds until they hit on the right combination for each patient, based on their years of experience dealing with Movement Disorders. All the meds in their arsenal are off label drugs. That means they are not typically prescribed for Myoclonus. Most are used to control epileptic seizures and some are normally prescribed for depression.

In my case my Neurologist says I have a progressive form of Essential Myoclonus, so I am thankful for the relief I get with a new medicine, even though I realize it may not be sufficient sometime in the future. But my outlook is better these days, so I choose to be happy with the apparent success of this combination and to not dwell on the future. See, I told you I was feeling better!

I thank God for this lifting of the gloom I have been in, as He guides the decisions my Neurologist makes in treating me!

Posted in Medicines and Supplements | Tagged depression, Essential Myoclonus, God, half-life, jerks, Lamictal, Lamotrigine, off label, Primidone, Quality of Life | 12 Replies

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