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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: off label

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

Still Improving

Day by Day with a Movement Disorder Posted on January 4, 2010 by DBMay 19, 2016  

Well, the Christmas and New Year’s holidays are over, and things are about to get back to “normal” around here. I made it through all the holiday foods without upsetting my stomach again, and I’ve finished the round of antibiotics. So I really can tell that I’m still improving.

I’ve stopped taking the Reglan and also the Nortriptyline for now. One of them was giving me horrible nightmares, and I haven’t gotten back to my usual sleep pattern yet. The Reglan is not to be taken long term anyway, as it can cause Dyskinesia, and I sure don’t want that! I plan to ask the doctor why he put me on the Nortiptyline, since it’s an anti-depressant. So many of these meds have off label uses, that I don’t want to just stop it completely without knowing why I was taking it.

I still am taking the Carafate an hour before meals and at bedtime, and I won’t go back to the supplements and vitamins I normally take until I stop that. It was just too hard trying to schedule all those extra pills and have my stomach empty for the Carafate.

I even managed to lose another pound during the holidays!! That surprised me, because I allowed myself to enjoy meals with family without concern for glucose readings or calories. I guess my stomach has shrunk, plus my eating habits have changed considerably since April 1, 2009, when I started dieting in earnest.

I am now trying to build back my exercise routine. I did Tai Chi yesterday morning for the first time in I can’t remember when, and I used the treadmill for 3 whole minutes. I know that doesn’t sound like much, but it’s an inexpensive manual one that only has the one incline setting, and walking on it for 2 minutes at a time has been all I could muster, until yesterday. I’m such a weakling! LOL

I never have been much for New Year’s Resolutions, but I guess mine needs to be to get back on a regular exercise routine and stick to it. I’ve lost enough weight now that I’m really in need of some toning up. I don’t know if this old body can recuperate from the baggy skin, but I need to try, at least. And I certainly do need to improve my stamina.

I didn’t do a very good job of testing my glucose levels regularly during the holidays. My results page has lots of empty spots in it. It seemed like every day I would either forget to take it, or we would be out of our normal routine, and I couldn’t take it at the right time. We went to see a lot of movies over the last couple of weeks, and I couldn’t take it then. The rest of the times were just negligence on my part.

My Diabetes doctor said I was doing fine and not to be so concerned about the high readings, and I think I’ve succeeded in not stressing over them to the point that now I’m not diligent any more. It’s always hard for me to find balance, and this is just another example. I’ll try to do better in January. I see him at the end of the month, and I guess he’ll do another A1C then. That will tell the tale, for sure, from my holiday laxness. I’m growing more and more confident that my weight loss will eventually get me out of the diabetic range. I know that’s my goal for April, 2010. I expect to have lost 50 pounds by then, and no longer be diabetic.

At my heaviest ever in March, ’09, I weighed 182, and I’m down to 142 now. So I’ve come a long way. I’m totally motivated to get the rest of the 12 pounds off that I set as my goal, and who knows, maybe I’ll lose a few more than that! I know I couldn’t have done it without keeping track of my calories and carb intake daily. There again, the test will be whether I can achieve a balance of right eating without having to count calories when I’m down to 130. I’ll have to watch the scales pretty carefully to keep from gaining it back!

Sounds like I do have some New Year’s Resolutions after all! And I’m sure I join lots of others who plan to eat more healthy foods, exercise, and lose weight this year. I look forward to twenty ten as being a good, healthy year for me!!!!!

Posted in Quality of Life | Tagged blood glucose, diabetes, diet, exercise, insomnia, low carbohydrates, off label, prescriptions, Quality of Life, stomach, Tai Chi | Leave a reply

Here I DON’T Go Again!

Day by Day with a Movement Disorder Posted on November 18, 2008 by DBMay 25, 2016 3

Well, the second round of Go-Lytely worked for all of two days before the constipation problem became evident again. So, I called both my Neuro and my Gastro today. My Neuro wants me to try replacing the Primidone with Gabapentin, which is the generic form of Neurontin. This is another one of the anti-seizure meds that is prescribed for all kinds of off label uses, including Peripheral Neuropathy, Tremors, and Myoclonus.

I’ve used this Drug Interaction Checker to see if I could take the Neurontin while the Primidone was still in my system, and that’s OK. So I should be alright changing over to the Gabapentin tonight. The half life of Primidone is 14 hours, so half the dose will be out of my system by 9:00PM tonight. I’ll take the Gabapentin before bed, and almost all the Primidone will be out of my system by tomorrow morning.

As I would have suspected, the list of possible side effects is long, and one of them is constipation. But, diarrhea is also in the list. I can only hope that it will control my Myoclonus as well as the Primidone has, and head me in the direction of diarrhea, rather than constipation! Only time will tell.

I feel like I’ve come full circle taking this medicine, as our older daughter (who suffered from Peripheral Neuropathy as a result of Gastric Bypass Surgery) was put on Neurontin about the same time I was finally getting my Neurologist’s diagnosis of Peripheral Neuropathy and Parkinson’s Disease.

Posted in Medicines and Supplements | Tagged elimination difficulties, Essential Myoclonus, Gabapentin, off label, peripheral neuropathy | 3 Replies

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