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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: Depakote

Off the Depakote, On to Lamotrigine

Day by Day with a Movement Disorder Posted on January 13, 2011 by DBMay 17, 2016 10

My Neuro didn’t fuss at me when I told him I had cut the Depakote dose in half, because I was depressed. Smart man, if he didn’t want a blubbering patient on his hands.

He’s changing me to Lamictal, well actually the generic Lamotrigine. Anyway, this new med can have very serious side effects if not titrated up in the system in small dosage increments, so it will be awhile before I can tell if it’s going to work or not. As I did my research on it, I did notice that it has a half-life of 13 hours. That means when I’m on a morning and night dose there will still be half the medicine in my system when it’s time to take the next pill. I shouldn’t see any ups and downs with it, at least.

I’m trying to look on the bright side of it, in case you hadn’t noticed, as there are some VERY scary side effects possible, although very rarely seen, or course. Isn’t that true of just about every med these days?? I did check with my pharmacist, and he said it would be OK to start taking the Lamotrigine tonight at that small a dose, even though I had the Depakote yesterday morning. There are definite warnings that they should not be taken together, and cautions about taking it with Primidone, which I AM still on. Dr. S. also said I was at the maximum dosage of Primidone he could give me without getting side effects from it.

I finally remembered to ask him to explain to me if my Essential Myoclonus is a progressive disorder or not. At the time my diagnosis was changed from Parkinson’s to EM, we were under the impression that it was not progressive, that it would not get worse, and that was a big relief to all of us.

But I’ve lost close to a third of my body weight at the same time that my Primidone dose has doubled, plus it’s not enough anymore to stop the major jerks. He said that based on that he thinks I do have a progressive version of EM that will get worse with age.

I guess I’d better make hay while I still can, eh? It’s easy to imagine that at some point in the future I will have considerable problems walking again and will have to settle for being zonked to be still enough to have any Quality of Life. I can only pray that that day is a long, long way off and that I will handle the thought of it better when I’m not so depressed.

So, again I have a bummer of a post, but at least I can end with the hope that the Lamotrigine will be a successful drug for me. Primidone gave me my life back for a long, long time. I can only hope and pray that Lamotrigine does the same.

Posted in Medicines and Supplements | Tagged Depakote, depression, God, jerks, Lamictal, Lamotrigine, prayer, Quality of Life, side effects | 10 Replies

Having Problems with Depakote Blues

Day by Day with a Movement Disorder Posted on January 4, 2011 by DBMay 17, 2016 2

My jerking and twitching have definitely improved since I started taking the Depakote in addition to my Primidone, but as the jerking lessened my blues increased. I seem to be on the verge of tears constantly, and I’m more irritable, too. So, I took myself off one of the Depakote doses – the one at night. I’m not sure if that is going to work, as it took some time to start seeing the good results jerk-wise from the Depakote.

I have a Neurologist appointment later this month, so we’ll see if he agrees with my choice to cut the dose or fusses at me for doing it on my own. Right now I’m miserable enough that I don’t care what he thinks. I’ve just got to do something to feel better, even if it means going back to the jerks.

I know it’s the New Year, and I should be all positive about 2011, but right now I’m just not in a positive mood. Sorry for dumping my mood on you. I pray it won’t last much longer.

Posted in Medicines and Supplements | Tagged Depakote, depression, Essential Myoclonus, jerks, Quality of Life | 2 Replies

Great News about my Diabetes!!

Day by Day with a Movement Disorder Posted on December 18, 2010 by DBOctober 22, 2019 2

My doctor is very proud of me for having an A1C of 5.5 two times in a row. That means for the last 8 months I’ve had a better sugar level than most people without diabetes! He actually said I was no longer Diabetic, and he halved my Metformin dosage. To say the least I’ve been celebrating this week, and with Christmas right around the corner I’m sure I’ll indulge more than I did last Christmas! After that, I’ll have to go back to eating more properly and checking my blood glucose levels, but for right now…we’re just celebrating.

I could never have lost and kept off the 60+ pounds over the last almost 2 years now if it hadn’t been for my dear sweet hubby, who does the grocery shopping and cooking. He’s read everything he could get his hands on ever since I was originally diagnosed with Parkinson’s way back in 2005 to be sure I eat the very best possible diet of high antioxidant Super Foods, as have I. And he checked Nutrition labels on every processed food he bought for the last 2+ years for sugar and carbs. I was determined to beat the Diabetes, if at all possible, but I wouldn’t have done it without his considerable help. And we wanted to alleviate the Movement Disorder symptoms as much as possible, too.

So here’s a great big {{{{HUG}}} to the love of my life!

As for the jerks of my current diagnosis – Essential Myoclonus, the news isn’t as good, but maybe I’m doing better than I was. The Depakote plus Primidone combination seems to work a little better than the Neurontin plus Primidone did. It just doesn’t take much to break through and send my shoulder into a jerking fit. The least bit of stress, and it can go on for what seems like hours. Like at the dentist the other day. I jerked in the chair the whole time he did a filling. I like my dentist, but I have childhood memories that have left me dealing with high stress every time I go. I’m better than I used to be, but all the jerking reminds me of how deep seated this fear is.

So hubby and I are celebrating our 50th Christmas together (if you count the years we dated or were engaged), with our family in good health. We are very thankful to God for seeing us through some rough times, but I have faith that times are going to get better.

I pray you and your family will know the Spirit of Christ during this Christmas season.

Posted in Nutrition | Tagged Christmas, Depakote, diabetes, diet, family, God, jerks, Metformin, Movement Disorder, nutrition, Primidone, Super Foods | 2 Replies

Praying the Depakote Works

Day by Day with a Movement Disorder Posted on December 3, 2010 by DBMay 17, 2016 2

I heard from my Neurologist Wednesday, and he’s trying me on Depakote, instead of the Neurontin. So far I’m not groggy, but I’m still jerking. Hopefully not as bad as I was, though. Today should be the test of it, as it’s had time to get fully into my system now. So, we’ll just wait and see. It does have some possible side effects that aren’t good, such as weight gain, so I’ll have to start weighing regularly again. And watch what I eat, too, as I had been splurging a good bit lately. But I’m not counting Thanksgiving.

It’s strange how they attempt to medicate the symptoms of Essential Myoclonus. Both of my meds, Primidone and Depakote, as well as the Neurontin he took me off of, are anti-seizure meds. But the EEG showed that I’m not having seizures. They really don’t know how these meds work for some people, and for that matter they don’t know what causes EM, either.

We had an enjoyable Date Day yesterday, going to the Galleria and walking around, mostly to see the Christmas decorations. But it’s not like it used to be. There were only token, if any, decorations in the stores, and they didn’t have a Santa in the mall, either. It’s sad to see how “politically correct” everyone’s become, but they sure want our money! But the mall itself was pretty, and the walking was good for me. And we did get some shopping done, but not at the Galleria! Hurray for “dollar stores” (I can remember when they were 10 cent stores)!!

I’ll try to get some more housework done today, and I’m praying that the Depakote works. My walking is still very unsteady, but that may be from lack of enough exercise. Might as well get a clean house while I build a few muscles, eh?

I hope you all had a wonderful Thanksgiving, as we sure did. And I’m thankful that my Neurologist does have some choices for meds to try for me. I pray that he finds the one that stops the jerking.

Thanks be to God for all his unspeakable gifts! He has blessed us in so many ways, particularly that my wonderful hubby is here by my side to help me in any way I need. I don’t know what I would do without him. I love him so much!!

I pray that you keep Christ as the center of your Christmas giving and celebrating, and that you and your family enjoy His Blessings during this holy time of year.

Posted in Medicines and Supplements | Tagged Christmas, Depakote, diet, difficulty walking, Essential Myoclonus, exercise, Friday Date Day, God, Neurontin, prayer, Primidone, weight loss | 2 Replies

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