Category Archives: Medicines and Supplements

Doctors, Doctors, and More Doctors

Day by Day with a Movement Disorder Posted on by 3

I’ve all but lost track of how many doctor’s appointments I’ve had since I last wrote. I’ve been to my Gynecologist twice, a Urologist, my Podiatrist, three Neurologists – one of those at the Muscular Dystrophy Clinic, as well as my own Dermatologist twice and a Dermatology Surgeon.

The upshot of all those visits is that the Neurologists can’t tell me any more than the UAB Neuromuscular specialist told us after the muscle biopsy results came back – there’s no treatment and no cure. I can’t even get any advice from them on beneficial supplements or my nutrition. So we have basically fired the UAB Neurologist and the MDA Neurologist and don’t intend to return to them. I will continue to see my own Neurologist regularly, however, as I need to touch base with someone from time to time for prescription refills and to have someone I can get an appointment with when needed.

I’ve been having urinary difficulties ever since my muscles started weakening, so I finally decided it was time to try to get help. My Gynecologist referred me to a very nice Urologist, and I have confidence that he will find a way to help me deal with these problems.

I’m spending hours a day doing my own research on vitamins, minerals, and herbs that might help maximize my cellular energy production and minimize oxidative stress at the cellular level. It’s a good thing I have a chemistry background. I never thought I’d have a use for that Biochemistry course I took almost 50 years ago! LOL! Not that I actually remember any of what I learned back then, but it has made reading all these online papers a little easier.

I’ve found several excellent books that I’ve read from cover to cover more than once, making notes about combinations of nutrients that work synergistically to improve energy production in the cells and decrease the level of gene mutation. And I’ve also wasted my time on a few books that turned out to be selling some proprietary program, rather than really trying to educate.

Thanks to my research, I’ve been gradually adding a variety of megadose vitamins, enzymes, and minerals, as well as continuing to use the herbal formulations. And all these capsules, powders, and tablets are showing a positive result. I continue to do my physical therapy, but I seem to have plateaued as far as how much I’m able to do at one time. The muscle fatigue takes over pretty quickly. But I definitely feel stronger walking in public than I did a few months ago. And my neck and back pain are more under control than they were. I was able to find a back support that stabilizes my neck and head, so I can manage sitting in a church pew a little easier, and the Neurontin and Robaxin help with the pain, too.

Mitochondrial diseases are caused by mutations of the DNA in the mitochondia, so it didn’t come as a complete shock that my Dermatologist found a squamous cell carcinoma on my face. I had Mohs surgery the next week, and it seems to be healing very well. I had to return to the Dermatologist last week, however, when a patch of skin very close to the scar became painful. The biopsy showed that spot was precancerous, so that area had to be frozen.

Next week I see my Opthamologist for my yearly exam. The retina, particularly the macula, is extremely susceptible to oxidative stress, so it’s very important that I do all I can to keep my eyes as healthy as possible.

My Diabetes continues to be under good control with diet, but I have been gradually gaining weight for the last few months – something I’m not happy about at all. I know some of it is water weight, because that’s a known side effect of some of the nutrients I’m on – but it’s not all water weight by any means. I think some of these supplements have increased my appetite, and my will power isn’t holding up too well to the urges. That’s definitely an area I need to work on right now.

I’m very thankful that I have been able to improve as much as I have in the last few months. I know a whole lot more about the process of cellular nutrition and ways to slow the genetic mutations. My hubby and I have faith that God will give us the wisdom to make good choices for supplements, exercise, and nutrition, and that He will guide the decisions my doctors make.

Making Progress

Day by Day with a Movement Disorder Posted on by 2

I’m pleased to report that my exercises are actually showing improvement. My neck is still giving me trouble, but I have been able to add a small resistance to some of the neck exercises and still do 10 repetitions. I see this as a sign of progress. But I am particularly pleased with improvement in the leg exercises. When I started I could not do a straight leg lift with my left leg at all. It simply would not budge. Now I can raise it for 10 repetitions, although the muscle starts complaining after the first 5. That is a huge improvement! And I can tell that I’m walking better, too.

I’m now on many of the natural herbal versions of my vitamin and supplement routine, as well as taking the full Mito Cocktail regimen. There’s really no way to be sure if the muscle improvement I’m experiencing can be attributed to the exercising, the supplements, or a combination of both. I assume it’s a combination of consistent exercising and the high powered doses of vitamins and cofactors I’m taking. Insurance won’t pay for any of these supplements, so to say the least – they’re expensive. But less pain and my increased energy make it worth it to us.

I continue to read everything I can get my hands on about vitamins and supplements, and I’ve learned a lot and been reminded of much I had already read about. I am now taking a low dose of Prozac, and my Neurologist prescribed Neurontin for pain, so maybe my improved outlook can be attributed to that – but I’d like to think I’m feeling better because I AM better! Either way, I’ll take it!

Hocus Pocus Dominocus

Day by Day with a Movement Disorder Posted on by 4

I did something the other day I would have never thought I would ever do. I went for an herbalist consultation.

You have to understand that I have a science background, having taught Chemistry and Physics. I’ve been to a Chiropractor within a doctor’s office a few times over the years, but never felt comfortable doing it. So making an appointment with this person was a real leap for me. But you also have to understand that hearing the words from your doctor – there’s no treatment and no cure – leaves you looking in different directions for help.

So, I did a lot of online searching about this particular herbalist and was impressed with what I read. I’m certainly not opposed to medicating with natural substances – I’ve been taking the Indian herb Turmeric for years at the recommendation of hubby’s Oncologist. After all, part of the Mitochondrial DNA mutations I have were caused by some of the prescription meds my doctors previously had me taking, so there’s no guarantee that common prescriptions are safe for everyone.

But I was extremely skeptical about HOW the process of deciding what I needed would be determined.

It’s called Applied Kinesiology, and it sounds like something that could win the QUACK Award of the Century! But it wasn’t invasive in any way, and we are at our wits end trying to find someone who will help with deciding what vitamins and supplements would help me. Through research on the Mito sites I’ve gradually added the supplements recommended in the Mito Cocktail, with no real way of knowing if we’re wasting the money on them or not. Plus over the years I had gradually added a bunch of antioxidants and vitamins, trying to improve my general health. We’d also improved our diet considerably, so now we eat a large number of Super Foods, with a good many being raw.

So we’re desperate for some guidance with what to spend our money on and what not to waste it on.

I can honestly say that we DID see an obvious strength or weakness in my muscle strength when holding in turn each of the vitamins and supplements I’ve been taking. (There was absolutely NO attempt to test my prescriptions, or to imply that I should not continue to use them or stop seeing my doctors.) After “testing” my box of supplements, the herbalist proceeded to test a variety of different herbs and vitamins on me, noting those where my muscle strength was the greatest.

After about an hour of this process, we were given a list of specific vitamins, supplements, and herbs that were supposed to be more affective for me than some of those I had been taking. But most of what I had been using were said to be effective and useful for me.

We left with the list, and I spent the next day researching each of these recommendations, checking for side effects and possible interactions with my prescriptions and other supplements. As far as I was able to determine there should be no problems with any of them. I didn’t order all that were recommended, but I did order several substitutions for over the counter versions of vitamins I had been taking, replacing them with herbal versions supplying the same vitamins more naturally.

So my new herbs should be arriving any day now, and I’ll let you know in a month or so if I can tell any difference. Wish me luck!!

Battling a Cold

Day by Day with a Movement Disorder Posted on by 4

I’ve been battling a doozie of a cold the last few weeks, the first one I’ve had in years. Knowing I have MITO I’ve been careful to watch for any bacterial infection. As long as it was just the cold virus there wasn’t any point in going to the doctor. We’ve kept the fluids going big time, and I’ve been depending on Thera Flu, Mucinex, and Robitussin cough syrup to deal with it. Until a couple of days ago, it did look like I was over the worst of it.

But yesterday I started coughing up blood streaked yellow mucus, and I knew that probably meant it had become a bacterial infection. So I saw my General Practitioner doctor today. We talked at length about Mitochondrial Myopathy, and I gave him a copy of the Table of Reported Drugs with Mitochondrial Toxicity from MitoAction. He asked me lots of questions and said he would be doing some research, too. I really like this doctor. I’ve been using him for years, and he is the perfect example of a doctor who makes me feel like I am the only patient in the office. I never feel rushed.

He prescribed a codeine cough syrup and an antibiotic Cpak, so I expect to be feeling better soon. This cold has really taken a lot out of me. That’s not surprising when you realize that my cells are working on low energy to fight it.

This doctor visit is a perfect example of why having a definite diagnosis is helpful, even if there is no treatment or cure. The doctor was able to go over the list of antibiotics I should avoid and choose an appropriate one for me to take.

Trying to Get Comfortable

Day by Day with a Movement Disorder Posted on by 2

I’m still having a lot of trouble with my weak neck muscles. I’ve read that the human head weighs 10 pounds, and I believe it! So we bought a new soft neck wrap-around brace that’s fairly comfortable, because there is an adjustment under the chin to make it smaller there. That keeps me from feeling like I’m choking, at least. My Neuro cautioned me not to use it too much, though, because it would just make my neck muscles that much weaker if I did.

So I’m mostly using it in the car and at church. I need it at church, because I don’t get any support from the chair in Sunday School. We’re meeting in our Fellowship Hall for the next few months while our sanctuary is being renovated, so they were kind enough to move a high back upholstered chair from the vestibule downstairs for me. That did help this last Sunday, but I’m still awfully sore by the afternoon. Sitting up to eat wears me out by the end of the meal.

At home I have a Tempurpedic type U shaped cushion I use on the sofa that gives me some support without doing all the work for me, and it helps a lot. We still try to get out of the house a couple of days during the week so I can walk for a while. I’m extremely slow, usually holding onto a shopping cart for help, but at least I’m getting some exercise that way.

My muscle biopsy is supposed to be Dec. 8, but I still haven’t received the official paperwork about it in the mail. So I’m just in a waiting game for now.

I continue to run Google searches occasionally, trying to find out more about the various types of Myopathy. I was very interested to find out there IS something called Steroid Myopathy! I’ve been telling every doctor I’ve seen that all this weakness started when I was pumped full of steroids after I developed Angioedema from a drug reaction. Who knows… I may turn out to be right!

I’ve also found that there are all kinds of Movement Disorder problems caused or aggravated by Statin drugs. Since Lipitor became more easily available today, and Statins are cholesterol lowering drugs, this is worrisome to me. I stopped taking my cholesterol meds when my liver enzymes went crazy, but there are an awful lot of people who take these drugs. We hear all these side effect warnings so much that I think most people’s brains just glaze over and ignore the warnings.

We had a wonderful Thanksgiving, and I do have a lot to be thankful for. Even though they drive me crazy with their slowness, I’m extremely thankful that we live close to a world renowned teaching hospital at UAB, so I can see their Super Specialists when I need them. And I’m very thankful I have a good Neurologist and a General Practitioner who take the time to listen to me and seem genuinely concerned about helping me get better.

I’m thankful for a supportive family who put up with me, as I know I’m not very easy to live with. It seems like everything frustrates me nowadays. So I’m irritable and easily upset. My poor hubby earns another star in his crown every day!

Steroids – I Hate Them!!!

Day by Day with a Movement Disorder Posted on by 6

I had tried so hard NOT to have to get a cortisone shot in my neck, because I had trouble the last time I had steroids. But when I had an allergic reaction to the Voltaren Gel, I really didn’t have a choice but to allow the ER doc to give me a steroid shot and put me on a Medrol Pak.

Normally, steroids make me very shaky, hungry, and I can’t sleep. This time I was on Benadryl and Flexeril, too. I don’t know if that made the difference, but I had a completely different reaction this time. I’ve gotten so weak even my voice sounds weak. I’ve not been hungry at all, and I’m not having any trouble sleeping.

I called my doctor yesterday, because of all the weakness. His nurse said to keep an eye on my blood glucose levels and my blood pressure, as steroids can elevate both. So, I checked my blood several times yesterday – and it was lower than usual!

I have one more day of steroids to take, but I quit the Benadryl and Flexeril yesterday, as I am no longer swollen and my neck is gradually improving. The nurse said I may continue to feel weak for up to 4 days after I stop the steroids tomorrow. Oh, goody!

Hopefully the next post will be more upbeat than the last few have been.

Angioedema from Drug Interaction

Day by Day with a Movement Disorder Posted on by  

It’s been interesting around here! The Orthopedist gave me a prescription for Flexeril and Voltaren Gel for my cervical disk flareup. I immediately started on the Flexeril, which is a muscle relaxer I’ve taken many times before. But I had to wait a week before my insurance company would authorize the Voltaren Gel. Since I ended up in the ER several years ago after taking steroids, and my GERD makes pain meds a poor choice, this cream that would be applied to the back of my neck and across my shoulders seemed a reasonable choice for me.

Two days after starting the gel, I woke up yesterday with my lips and lower face swollen so much I looked like a duck!! I put in a call to my Orthopedist and obviously stopped taking the Flexeril and Voltaren Gel. I debated on taking some Benadryl while I waited for a call back, but decided adding more meds before I had professional advice might not be a good idea.

When I finally did hear from the doctor’s office, his PA told me to go to the ER, which we did.

I was told that I had Angioedema, and he agreed with me that it was probably the Voltaren Gel that had caused the swelling. Angioedema is swelling under the skin, rather than hives, which makes welts on the skin, and it is an allergic reaction. So, I ended up with a steroid shot after all. He also told me to go back on the Flexeril, take Benadryl, and he prescribed a Medpak – MORE steroids LOL!

I’m still swollen today, but my lips are not as tight as they were yesterday. And surprise, surprise – I slept, thanks to the Benadryl.

Cutting Lamotrigine Dose Back

Day by Day with a Movement Disorder Posted on by 6

Well, I’ve tried taking an extra Lamotrigine dose in the morning for about a month now, hoping that would take care of the jerk. I seem to invariably start jerking as soon as I get in Sunday School and continue through church. But the extra dose has not stopped them.

I visited our daughter this last weekend and went to church with her. I only jerked a little in Sunday School, but it was a very small class with only a few women in attendance. But, as soon as we got in the large church sanctuary, my shoulder and foot went crazy. So it must be something to do with being in a crowd.

So, if it’s not going to help, there’s no reason to take the extra pill. I cut the extra one out this morning, and I’ll see how I do for the next few weeks. Getting these doses right is like doing a personal Clinical Trial, as I’ve mentioned in the past. You have to try to compare apples to apples and only change one variable at a time. And I’m careful to do that as much as I can.

I have done better with my motivation to exercise, although right now I’m feeling the effects of the Daylight Savings Time time change, so I didn’t feel like exercising yesterday and today. It always takes me a little while to adjust to the different sleep pattern, more so now that I’m older and on meds that I take on a regular schedule than when I was younger and not on meds.

Half-Life, What Is It?

Day by Day with a Movement Disorder Posted on by 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!

4 Days of Full Lamotrigine Dose

Day by Day with a Movement Disorder Posted on by 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.