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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!

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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

4 Days of Full Lamotrigine Dose

Day by Day with a Movement Disorder Posted on January 24, 2011 by DBMay 17, 2016 4

I’ve been on the Lamotrigine morning and afternoon 25mg dose for 4 days now, and only the first morning caused me any problems. I went back to sleep after breakfast on that first morning I took a morning dose, and I slept almost 3 hours. That is an extremely unusual thing for me to do. But I haven’t been sleepy since then. It may be helping a little bit, but nothing spectacular. I’m still jerking pretty badly if I’m under even the least amount of stress, which seems to be a lot of late.

One of my triggers seems to be getting in any kind of a crowd, so Church is always very stressful for me. I’m very self conscious about the jerking, and I feel bad for the people who sit behind me, as it must be very distracting.

But I’m not zonked on it, as I was when the Neurontin dose was increased. That’s a good thing. And I know I’m on the smallest dose size the Lamotrigine comes in, so there may be some room for adjustment to lessen the jerks a little bit more. I’m hoping that’s the way it will work out, without putting me in a daze the way the Neurontin did.

I don’t think I’ve ever really explained what the Primidone and Lamotrigine prescriptions are for. They are actually used as anti-seizure meds, and the Lamotrigine can be used with Bipolar Disorders and Depression disorders. The Clonazepam the MDS tried me on first, as well as the Neurontin, were also meds used for seizures and depressive disorders. (Which I thought made it odd that they depressed me!) So it’s kind of like taking a pig in the poke for medicine.

Their use for Essential Myoclonus is considered an off-label use, and from everything I’ve been able to read, the medical profession really doesn’t understand how these meds work in the brain. Evidently when they work properly they calm down whatever erratic electrical signal there is that’s coming from my brain that sets off these muscle spasms.

This is where having a Neurologist I trust is so very important, and a pharmacist who watches over every medicine I take, prescription as well as over the counter. I wouldn’t think of buying some of my prescriptions at one pharmacy and others somewhere else. It’s just too dangerous for me.

So I’m trying hard to be hopeful that my Neuro will find a good balance on my medicines and get me back to where I’m not jerking so much. And I’m fighting the blues, although I certainly haven’t won that battle yet.

Posted in Medicines and Supplements | Tagged anti-seizure, depression, drug interaction, Essential Myoclonus, hope, jerks, Lamotrigine, Neurologist, Neurontin, pharmacist, Primidone, Quality of Life | 4 Replies

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

My How Time Flies

Day by Day with a Movement Disorder Posted on November 3, 2009 by DBMay 21, 2016 2

Wow! It’s been almost a month since I posted here! I can’t get over how quickly time is going. For the most part I’ve been doing pretty well, although the blood glucose numbers continue to peak at higher numbers than I would like. I’m not stressing so much about it though, so that’s a good thing.

I was increasing my daily exercise quite nicely, until I came down with an infection. These powerful antibiotics always sap my strength, not to mention upset my digestive system, so I haven’t done any exercising lately.

My weight continues to drop ever so slowly, but I’m pleased that I seem to be past the plateau I was on for what seemed like forever. Of course it really wasn’t that long … it’s just that I am not one for patience. I know that losing the weight this slowly is preventing the sagging skin problem that can come with large weight losses. I just have to keep reminding myself of that.

I continue to be frustrated by how hard it is to order from restaurant menus. I’m beginning to learn a few tricks that work, though, like asking to see a dinner menu to see what other options might work better for me. Yesterday we ate lunch out for hubby’s birthday, and I was able to have part of my order from the lunch menu and part from the night menu. And my test levels were good!

I was very pleased with myself that I made the transition from Vista to Windows 7 with no major hitches. And the one minor glitch, that left me with a corrupted mouse pointer file, I was able to find a fix online all by myself. I’ve always been good with computers, so any evidence that I’ve “still got it” is always welcome.

I do continue to have odd brain glitches from time to time. I can forget something completely in a matter of seconds, and I find all kinds of mistakes I’ve made in our online business. Those kinds of goofs really frustrate me, and I get so upset with myself. And that only makes things worse. I need a big dose of I Don’t Care pills at times like these. Hubby is always telling me it’s no big deal, but every little thing I do that’s so bizarre just adds to my negative self talk. I know some of it is my age, and some is from all the medicines I take, so I try think of that when I’m so down. When you’ve taken care of Alzheimer’s family members for years you can’t help but see yourself heading down that path at times. Then I try to tell myself that it’s not forgetting to put something in the refrigerator that counts. It’s that I still know what a refrigerator is for that’s important!

I’m looking forward to having the family here for Thanksgiving, with all the hustle and bustle of the Christmas season not far off, either. So time better not fly too fast, or they will be here before I’m ready for them. If so, they’ll just have to overlook the mess and enjoy the day together anyway!! LOL!!

Posted in Quality of Life | Tagged blood glucose, brain fog, computer addict, depression, diet, exercise, Quality of Life | 2 Replies

Diabetes Doc Says I’m Doing Just Fine

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

Well, my doctor was not at all upset by my numbers yesterday. He says as long as my A1C is as low as it is there’s nothing to be concerned about. So hubby and I are just going to have to put up with the sporadic high numbers.

A1C is a blood test that takes just a few minutes to get the results on. Any time my blood sugar goes too high some of my red blood cells are altered by the extra glucose in the blood stream. This change is not reversible. So, until those blood cells die in a couple of months or so, these changed blood cells are floating around in my veins and arteries. The A1C test measures the percentage of blood that has this glucose marker on it. Mine was 5.5 the first time I had it taken, 5.6 the second, and now 5.7 this third time. Those numbers are very good. Anything below 7 is good for a Diabetic, so I have a long way to go before he’s going to worry about me.

I did get my flu shot while I was there. That’s the regular flu shot. I asked the nurse when they expected to get the Swine Flu vaccine in, and she said they’re not going to get it. I’m glad. This batch was just hurried up too much for me to feel comfortable taking it. I would have, though, if he had recommended it, since diabetes is one of the factors that makes a person susceptible. Older people are not supposed to be prone to catch the Swine Flu, since we were exposed to a similar flu some years ago.

I’ve only had the flu once in my life, and I sure don’t want it again. So, I’m glad our church has put antiseptic foam pump bottles all over the place and is encouraging everyone to use them.

I don’t see my doctor again for 3 months, and maybe this time I can actually stop stressing over my numbers. I’m going to try, that’s for sure. The funny thing is when I took my glucose level 2 hours after eating lunch yesterday I got the highest reading I’ve ever gotten. I did have a small piece of carrot cake without the icing, but everything else I ate should have been OK. Of course “should have been” and “really was OK” may have been entirely different.

I did all my exercises and stretching today. They told me to try to stretch out my left leg, which has been hurting for several months now. I thought at first it was arthritis in my knee that was flaring up from exercising. But as it got worse I realized the pain is on the back side of the knee, not the front. The PT felt around and said it was all very tight, and gave me a stretching exercise to try to loosen it up. That’s the Myoclonus acting up for sure, as my left leg does a lot more jerking than the right one does.

I’ve been sitting with a hot pad under my knee this afternoon, trying to calm the muscle down a bit. Since it hurts so much, hubby and I have decided I should exercise every other day for awhile and see how that does.

So, I’m to stop fretting over my numbers, but keep testing as I have been. That’s a tall order for me, but I will do my best to let go of the anxiety I feel when the number is higher than my target number. And as I get back on a regular exercise routine that should help to lower my numbers, too.

It’s all about keeping a positive attitude.

Posted in Type II Diabetes | Tagged A1C Test, blood glucose, depression, exercise, Physical Therapy, Quality of Life | Leave a reply

Blood Glucose Test Numbers are Still Jumping All Over the Place

Day by Day with a Movement Disorder Posted on September 23, 2009 by DBMay 21, 2016  

The title says it all. I am not getting consistent numbers on my blood glucose test numbers at all. Many nights it comes back in range, only to have the next morning be high. Often I can’t think of a thing I’ve eaten that would make the numbers go too high, but they do anyway. The most glaring example lately was while we were traveling, and I had a grilled pork chop and 2 scrambled eggs. That’s all. No toast or grits or any carb at all, and had one of the highest readings I’ve had so far.

So, I’ve made an appointment with my Diabetes doctor for next week. I wasn’t scheduled to see him until November, and I just couldn’t wait that long.

I did have my last Physical Therapy session yesterday. I’ve got a pretty good exercise routine now, if I can just make myself do it. I’ve been so down about the testing numbers that I’ve not been exercising as much as I should. I’ll have to do better, for sure.

I had a strange morning this morning … up to my old ways … been up since 3:30AM. Don’t know what happened, but I woke up wide awake and couldn’t get back to sleep.

That’s all I have for today … just discouraged right now.

Posted in Type II Diabetes | Tagged blood glucose, depression, exercise, Physical Therapy | Leave a reply

Seeing My Neurologist This Week

Day by Day with a Movement Disorder Posted on August 3, 2009 by DBMay 21, 2016 4

It’s time for another visit to my Neurologist this week, and I’m looking forward to seeing what he says about the Diabetes diagnosis and my Physical Therapy exercises. I’m still having some difficulty keeping my blood glucose numbers where they should be, and that keeps me somewhat down in the dumps. I feel like hubby and I are doing everything possible to put the right foods in me, so I just don’t understand why I can’t keep my levels in range all the time. It is just another complex disease to have to deal with.

I’ve been working really hard to get our new Collectibles Catalog online for the last few weeks, and the clutter I’ve made with all my stacks of plates and such is getting to me. It seems like we’re living in a warehouse these days, with boxes stacked everywhere, full of plush animals and vintage items, too. It’s a fun business, and we enjoy going out on the buying jaunts, but then I come home and have to try to find a place to store our “finds”. It seems I can’t have my cake and eat it, too … a clean house and keep on buying new lovies and collectible finds.

I’m still practicing with YouTube videos of Sacred Harp music, and it’s a slow go to learn how to do it. My brain power is definitely not what it used to be, but that could be old age creeping up on me, too. All I know is that I don’t learn new things anywhere near as easily as I once did, and it’s aggravating and frustrating! I read the other day about a 90 something year old lady finishing college, and I thought to myself how impossible it would be for me to absorb all that information now.

I am being very successful with my weight loss attempts. I’m down another couple of pounds, losing at the rate of 1 pound about every 10 days. I’m hoping that by going this slowly and steadily with it that I will not end up with the baggy skin they always show on TV.

Speaking of TV, we’ve been without any TV reception now for several weeks, thanks to an electrical storm that killed our amplifier and antenna rotator. We’ve discovered some of our favorite shows on hulu.com, and I have my notebook hooked up to the TV, so we can both watch the same thing at the same time. We have a large collection of movies, too, so we’ve managed to “watch the tube” several hours a night. I’ve ordered a new amplifier, and do plan to replace the ruined parts and get our television shows back. I do feel good about my success in getting the picture on my laptop to show on the TV. So some neurons are still firing up there.

I’ve done a lot of whining today, and for that I’m sorry. I considered erasing the whole post, but I want this blog to be a true look at what it’s like to have my health problems, so you’re stuck with it. My apologies.

Posted in Quality of Life | Tagged blood glucose, brain fog, depression, diabetes, diagnosis, diet, exercise, Friday Date Day, Neurologist, nutrition, Quality of Life | 4 Replies

On Higher Glucophage Dose for Awhile Now

Day by Day with a Movement Disorder Posted on July 18, 2009 by DBMay 21, 2016 4

I’ve been on the double dose of Metformin (Glucophage) now for about 2 weeks, and it has definitely helped with the fasting blood glucose levels I test for first thing in the morning. I’m not doing so well, however, with the after meals tests for lunch and supper. I’ve even had some high readings when I’ve eaten the same thing I’ve had other lunches with good test results. It’s very discouraging, and I’ve begun to have bouts of depression over it. Hubby is extremely supportive, but it upsets him so much when I express the feelings of depression that I try to keep such comments to myself as much as I can, or, like here, vent on this blog. Right now it feels as if I’m never going to be able to eat a biscuit or have even a small helping of Italian food ever again, let alone a pizza! Desserts are off limits, too, unless I make them myself with artificial sweetener … and I don’t bake!!! I basically don’t cook, really, as hubby enjoys fixing lunch far more than I ever did. And I usually have something microwaved or canned soup for supper.

I get the most discouraged when we eat out. It’s awfully hard for me to find anything to eat that isn’t going to send my blood glucose too high, or get me off my diet, or set off my GERD. We ate at Waffle House the other night, and I just knew I was going to do OK, because I ordered a ham and vegetable filled omelet. I didn’t eat the grits, but I did eat the toast, and that was a mistake. Not only did I have a high reading afterward, but the omelet sat heavy on my stomach all the next day. I was not feeling well at all! I suspect it was because of all the butter they use in cooking their omelets, plus it had lots of cheese in it, which I’m not supposed to eat. Next time I’ll have to get one with minimum cheese and see how I do. Between watching my carbs and my calorie intake, and taking into account my lactose intolerance and my GERD … well, let’s just say that there’s not much left I can eat! LOL!

My knee is still bothering me, and that’s limiting my desire to exercise somewhat, plus it’s harder to make myself do it when I’m down in the dumps. I am doing the sets at least once a day on most days, and I go for Physical Therapy next week. I’m still losing a little weight each week, about a half pound a week. I broke 160 this week, which I’m very proud of. It will be several more days before I can call it 159, though, so I look forward to that milestone.

My continued weight loss has been good for counterbalancing my discouraged feelings about my diet. I’ll just have to keep on being proud of the weight loss, and try not to be so upset about the blood glucose readings. I think I can…I think I can…

Posted in Type II Diabetes | Tagged blood glucose, depression, diet, exercise, GERD, Lactose Intolerance, stomach, weight loss | 4 Replies

My First Day on Neurontin (Gabapentin)

Day by Day with a Movement Disorder Posted on November 20, 2008 by DBMay 25, 2016 4

I got through my first day on Gabapentin fairly well. I did not have any jerks or tics, although my walk was again like being on a ship. The room did not spin, but my balance was way off. I felt drugged much of the day. We’ll see how I do today, because the Primidone should be completely out of my system by now.

I continue to clean the house and took on one of those “stacks” that seem so easy to pile things on in the beginning and so hard to get rid of when they have grown. This was the place where we pile Sunday School books, bulletins, etc. and it had grown to be a monster. I found quarterlies as far back as 2004!!! A stack of really neat Holman commentaries on the Sunday School lessons will be given to a friend who is a part time bi-vocational preacher. A stack of Christian magazines will end up in some of my doctor’s waiting rooms, and much of it will be added to our local recycling bin. With that stack gone the dining room looks better already.

My Tai Chi attempts are improving, though pitiful looking to anyone who might see me. And I continue to do the morning exercises for my legs and neck that the therapist put me on last year. My strength is returning little my little.

It’s so much easier to set goals and work toward them now that I am off the Clonazepam and feeling better. I’m very thankful to be feeling motivated again instead of so apathetic!

Speaking of goals, I passed the 1,000 item mark on our online Catalog. I had set that as a goal to reach by the end of this year, and I met it a whole month in advance. I hope to have another thousand listed by the end of next year. The Search Service and our sales keep me plenty busy at the computer, which still serves as a way to break up my physical activity.

All in all I can say I am doing very well, and I thank God for his many blessings.

Posted in Medicines and Supplements | Tagged apathy, depression, elimination difficulties, exercise, Go-Litely, house cleaning, Lost Toys Search Service, Miralax | 4 Replies

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