Tag Archives: MITO

Back to Methocarbamol – Not as Weak – Still in Pain

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I’m finally completely off the Clonazepam and back on the Methocarbamol and Neurontin. And I have a Neuro appointment in June. I had hopes that the time off the meds, while I tried Clonazepam, would make them effective again – but no such luck. They take the edge of the pain, but don’t really stop it. But I’m not as weak as I was at my worst on the Clonazepam at least.

Sinus Infection

I’ve had a bout of sinus infection that caused one side of my face to ache like a toothache. In fact I actually went to the dentist, thinking I had cracked a tooth clenching my teeth in my sleep while I was still on the benzo. The x-rays showed it was more likely a sinus infection. So my doctor put me on an antibiotic. He also told me to stop using the regular OTC sinus medicine I’ve been using, as my blood pressure was way to high. He said to be sure I buy a brand that has HBP on the label, and we bought some on the way home from the doctor.

Antibiotics usually give me digestive problems, but this time it hit as nausea and vomiting. I ended up having to get the doctor to call in something for that. So I haven’t really had what you could call a normal week yet since being back on my old meds. I can still hope that the pain level will subside.

Muscle Pain

It’s hard to describe these pains – I call them traveling pains, for lack of a better term for them. I will ache in one place, say my shin, for 10 or 15 minutes, rub it for a bit  or use a hot pad on it, then it subsides and within a few minutes my other leg hurts in the calf. Repeating the rubbing and heat, and the next thing I know it’s my neck that’s hurting. A few more minutes and my arm hurts. This goes on all day long and all night long. In the daytime, as long as my mind is occupied, such as when I’m working on the computer, it usually doesn’t take over my awareness. But let me get still, like at church? It’s NOT comfortable. The same thing at night – I don’t sleep well, waking up off and on all night long trying to get comfortable.

The odd thing is, I remember waking up during the night screaming as a young child, begging for my Mama or Grandmother to rub my legs. They called it growing pains back then, but now I wonder if I wasn’t already having MITO symptoms.

My Last Clonazepam

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Well, I “slept” without the Clonazepam last night. It wasn’t good sleep, by any means, as I have no idea how many times I woke up and waited to go back to sleep for a bit – but I made it through.

Of course, because of the long half-life of this benzo, I still have some of that last .25mg pill from Thursday night in my system. It will take the rest of the weekend before I dare try going back to my old meds – Methacarbamol and Neurontin. I have called for a Neuro appointment, but no telling how long it will be before I can actually see him.

Maybe this couple of months off my usual meds will make them work better for me again. I had been gradually increasing the doses to the maximum, because they were no longer helping with the muscle spasms and pain. And the high doses were making the brain fog worse. That’s why I had asked for a med change, and how I came to be back trying Clonazepam.

I decided to look back through all my blog posts for every mention of Clonazepam, as I had been on it once before, back near the beginning of this saga. At that time I was on Parkinson’s meds, and the extreme muscle weakness I experienced was attributed to the combination of meds. Now I know that’s probably not the case. The wet noodle muscle weakness I described back then is exactly how I’m feeling now.

Asking for Help Doesn’t Come Easy

DH has done his best to take up the slack here at home, helping with things I would normally do quite easily. I had gotten very frustrated with him, because he wasn’t helping. But he’s not a mind reader, and I hadn’t actually asked him for help. So we had a “come to meetin’ talk” the other night. Now the air has been cleared, and I’m getting more help. I still have to remind him, as he had gotten in the habit of letting me do a lot of stuff he once would have done automatically. His paralyzed leg and slow recovery from his heart attack changed both our roles considerably. But for now, I’m more in need of help than he is. And I’m getting it, sometimes after asking, sometimes without asking.

I did ask DH to bring the walker back upstairs, but I’m resisting using it, just as I did years ago. My DD fussed at me yesterday when she saw how slow and shuffling my gait has gotten, saying I needed to get over my pride and go back to using it. I know she’s right, but it’s a hard change to make. It feels like defeat. And in my mind it’s so much more VISIBLE than my gait – it makes me conspicuous, and that’s something I am NOT comfortable with.

This whole process of slowly going off one set of meds, then slowly going on another med, slowly increasing the dosage, then slowly cutting the dosage back to nothing has taken a couple of months. It’s the only safe way to transition from such powerful chemicals, and it’s the only way to find out if something different will help any more than what I was already on.

So I continue being a clinical trial of one, basically using myself as a guinea pig, praying each time that something will work to improve my quality of life.

Clonazepam Is NOT for Me

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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!!!

Still a lot of Pain

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So far I can’t say the low dose Clonazepam, plus Methocarbamol has made a dent in the pain I’m having from constant muscle spasms. I spend most evenings wrapped up in a hot pad, moving it from place to place, trying to calm my muscles. I can manage to stay busy enough during the day to ignore it up to a point, but once I get still, I realize just how much “inside” muscle movement goes on constantly. No wonder I’m so tired by night time – I’ve literally been “moving” every minute of the day.

Being still at church makes me more aware of all the spasms, too. Plus, no matter how much I bundle up there, I’m always cold. And cold is something I don’t handle well at all. I wear thermal undies year round for church – AC and drafty heat both cause issues.

Care Giving Ended

Our short stent as Nursing Home Sponsors didn’t last but a few days – he wouldn’t stay, no matter how much better off he would have been if he had. I’ve called him a couple of times to check on him, but can’t stop worrying about him. That whole situation took quite a toll on my emotions – far more than the tiny Clonazepam pill could handle. I know it’s just a matter of time before he ends up back in the hospital. Learning from past experiences with our parents and daughter, I have his “hospital bag” all ready to go. LOL We’ve done all we can for him at this point, except for prayer – and God gets a lot of that every day, searching for insight on the right way to deal with him.

Need to Vent

I wasn’t supposed to see my Neuro again for 6 months, but at this point I will probably give in and call for an earlier appointment. It’s just hard to accept that there’s nothing they can do to help me feel better – no matter how many times I remind myself there is no treatment or cure for Mitochondrial Myopathy.

There are so many people in the world living with horrible medical and emotional situations, I feel ashamed of myself for whining. But it’s just one of those kinds of days, and I need to vent. I originally started this blog because I couldn’t find anyone talking about what it was really like living with a movement disorder. Oh, there’s plenty of medical information out there, but what it’s like to LIVE this way? Not so much about quality of life. So if I gloss over the bad days, I’m defeating the whole purpose of writing.

I thank you for your time to follow my blog and covet your prayers, both for us and for this cantankerous old man we’re trying to help.

Praise God for all His Blessings!!

Bones, Muscles, and Pain Equals Surgery

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Bones

Two years ago my bone scan came back showing excessive bone loss. My mother’s hip broke and caused her to fall (not the other way around). That, and the scan results, put me in the high risk category, so I’m very motivated to improve my bone density.

My OB/GYN put me on daily Evista to treat the Osteopenia, but I had a severe muscle spasm problem while on it. Not surprising, considering how much jerking, twitching, and trembling I’ve had at various times over the years, due to my Mitochondrial Myopathy. I stayed on the Evista for two months, thinking surely my body would adjust to it, but it just kept getting worse.

(My Orthopedist suggested I try Forteo, which is a daily self administered shot, and I have not had any bad side effects with it. I’ve been on it for eight months now.)

Muscles

Even after I stopped taking Evista, the muscle spasms didn’t stop, particularly in my upper back and neck. I started upping the doses of Methocarbamol muscle relaxer and Neurontin (for nerve pain), trying to control the pain. The more pills I took a day, the more foggy I became. I couldn’t function without the pills, and just barely with them.

My Neurologist did another MRI on my neck and sent me to my Orthopedist for a series of epidurals. These helped, but not consistently, and they will only do four a year. So the relief from pain was fleeting. The last epidural I had didn’t help at all.

Pain

By February of this year I was in severe pain all the time. It had radiated down my arm, midway down my back, and gone up to the top of my head. The headaches felt just like someone had a huge nail pressing into the top of my skull. February 25, 2015 was my turning point. I ended up in the ER with my blood pressure over 200, and my head about to explode. They brought it down with IV meds and sent me home.

Surgery

I started on Amlodipine blood pressure pills and went to my Orthopedist to ASK him for surgery. After looking at the new X-rays and MRI of my neck, he agreed. On March 24th I had Anterior Cervical Discectomy and Fusion (ACDF) of C4-C5 and C5-C6. I stayed in the hospital that night and came home the next day. The hospital stay is a blur for me, because I was on a Morphine pump. About all I remember is the nurse telling me to “push the button” over and over. And I remember choking and gagging on whatever it was they tried to feed me.

Recuperation

I had researched the surgery, of course, so I was aware that they go in from the front of the neck, moving the esophagus aside so they can reach the disks and vertebrae. Hoarseness is a common side effect of this surgery and often swallowing difficulties as well. For most people the hoarseness only lasts a few weeks. At first it was an effort to squeak out even a syllable or two, and everything I tried to swallow choked and gagged me. And there was more swallowing pain than I had expected. I should have known there would be considerable pain; they sent me home with a prescription for 90 Norco tablets.

It’s been about six weeks now, and I’m still a little hoarse, although much better than I was to begin with. I’ve been using Thickit to make swallowing liquids easier since the first week at home. I’m needing it less and less now.

Outcome

The voice and swallowing problems have been very frustrating, but become less of an issue each day. But the neck, shoulder, and back pain have diminished from 8-10 to 3-4!!! I’m no longer on blood pressure medicine, and I usually only take two muscle relaxers a day.

I was apprehensive about having this surgery, but I’m glad I did.

I consider the operation to be a Success!! Praise God for his gracious healing.

Still on LCHF Lifestyle – Still Dealing with MITO

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I’m continuing on with the Low Carb High Fat lifestyle and finding it very easy now to comply with the no grain, no below ground vegetables, and no legumes or beans other than green beans.

I’m using an easy to make dessert that satisfies my chocolate craving and a no wheat egg bread recipe that cooks in the microwave oven in less than 2 minutes. Those two recipes alone are probably responsible for keeping me on this diet.

My eyes are better, but still not back to normal. My eye doctor really doesn’t think the change in diet is at fault, as tears are made of lipids (fats), and I’m certainly getting plenty of good Medium Chain Triglycerides in the Coconut Oil I consume daily.

He would normally prescribe steroid drops at this point, or Restasis. But we’re both reluctant to do that, because of my Mitochondrial Myopathy. So he’s recommended hot compresses twice a day and massaging the lids with a water and baby shampoo solution. The hope is that my tear glands will start producing more tears due to the stimulation.

I am losing weight for sure, and I’ve only felt hunger a few times since I started this diet in earnest in mid January. The first couple of weeks in January were spent gradually changing over and using up the food that was already in the house.

The digestion issues resolved themselves, as I had hoped they would. I do take MiraLax every morning, but I’ve been doing that for many years. My digestive system muscles are weaker than normal, thanks to the MITO, so dealing with constipation is par for the course.

I did have an upsetting situation develop in church today. We’re having some kind of short in our sound system that has caused me to go into Myoclonic jerks the last few weeks. But it seemed like today there were more sudden high squeaks from the organ and more crackling sounds out of nowhere that just set me off. By the time the service was ending I was in full Myoclonus and crying. Everyone nearby came to find out if I was OK, but all I could tell them was that I was OK, but the genetic disorder I have makes me have a hyper startle reflex.

I really appreciate their concern, but it embarrasses me when I go into one of these “fits”. The more I try to stop the jerking, the worse they get. I just have to find a way to relax and wait them out. It’s been some time since I had this much trouble with the jerking, but the constant pain I’ve been in for months now probably contributes to my tolerance level for unexpected noise being way down low.

So I continue to have muscle issues and other odd problems caused or exacerbated by MITO, but I’m also working hard to find the right combination of diet and activity to maximize my quality of life. I have been reading every book on nutrition I can get my hands on for several years now and continue to do so. And I’m currently going to physical therapy twice a week, hoping to strengthen the muscles in my neck, back, and shoulders and alleviate my pain.

Trying the Low Carb High Fat Lifestyle

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I’ve been studying anything and everything I could get my hands on about mitochondria and cellular energy production ever since I received the diagnosis of Mitochondrial Myopathy. Since the doctors can’t offer much in the way of treatment, other than suggestions of taking CoEnzymeQ10 and B vitamins, it seemed that if I were to improve – it was going to be by improving my diet.

So over the last year I’ve studied several books and searched all over the internet for information about Paleo, Biblical diets like the Maker’s Diet, and most recently Low Carb High Fat (LCHF), or Ketogenic diets. These are not “diets” in the usual sense of the word, but lifestyle changes. I found quite a few points of common ground in all three of these approaches.

All three emphasize eating the way God meant for our bodies to be fueled, long before the food industry convinced us that stuff in pretty cardboard boxes was better for us than real food. And all of them would be appropriate for my Type II Diabetes.

After seeing Dr. Perlmutter on the Dr. Oz show some time ago, I bought his latest book, “Grain Brain”, and found his approach to make sense for me.

So I’ve been grain free and also greatly increased my fat intake for about the last two weeks and can definitely tell the difference in my energy level. And I don’t just mean I feel peppier – I’ve actually not been as cold as I normally would have been. It may just be a placebo effect, but I’ll take it, either way!

I’m hoping I will see some of the brain fog lift as well, as I reduce the inflammation in my gut that gluten has probably been causing. In all the years of digestion issues I’ve had – I have never been tested for gluten sensitivity, even though I have been diagnosed with IBS and GERD, as well as experienced several ulcers over the years. Since I have so many symptoms of gluten sensitivity, it seemed worthwhile to experiment with the Grain Free approach for at least a couple of months.

I don’t think the dietary adjustments required in a LCHF or Ketogenic diet are something that everyone would want to adhere to, but the continued pain, lack of energy, and brain fog I’ve been experiencing now for several years has made me desperate enough to try just about anything that looks safe.

Now THAT Was a Doctor Appointment!!

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I can’t praise my newest doctor enough. I had asked my Neurologist several months ago for a referral to a Nutritionist, since none of my doctors seemed willing or able to give direction to my own research on supplements and cofactors. Most Nutritionists offices I’ve found on the internet appear to be glorified weight-loss clinics, but this one is different. I’m sure that’s why I had to wait so long for the appointment.

I finally had the appointment this week, and the dialogue with the doctor lasted TWO HOURS!! It was the most thorough question and answer period with a doctor I have ever had in my life. He asked many questions about lifestyle, medical history of mine and my family, my sleeping habits, spiritual values, as well as the obvious questions about my current eating habits.

He asked lots of questions about how my Mitochondrial Myopathy presents, how it is inherited, and all the issues I’ve had over the years that were misdiagnosed, but were obviously early manifestations of this disease.

He spent time explaining his approach to achieving maximum nutrition. Unlike my desperate visit to the herbalist, there was absolutely nothing mumbo jumbo in his philosophy, but he still obviously embraces much of the holistic approach to medicine.

For the first time since my diagnosis, I have now had a comprehensive blood panel testing for current levels of every imaginable vitamin and mineral, as well as more standard blood panel tests. He’s also re-tested my heavy metal levels, as we live very near an EPA toxic site that is still being monitored. The phlebotomist took 14 tubes of blood!!

I see him again in two weeks, and we’re looking forward to it. I am to keep a food log for the 7 days prior to the appointment.

In the meantime, he wants me to up my protein intake – and he made specific suggestions about what to eat more of, based on foods I had already indicated that I liked and ate. And he wants me to do chair yoga and meditation daily, practices I have previously only dabbled with.

But the most wonderful and hopeful part of this office visit was his request that I provide him with information, so he could do research on his own about Mitochondrial Myopathy!! I do carry with me in my “medical bag” a card from Mito Action that outlines information for clinicians, and of course that has their url on it. He was very pleased to get that as a start, and I’ll be taking a list with us, and lots of printouts, when we see him again.

For the first time in a long time – we feel HOPE!

Earning my Medical Degree

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I decided that the only way I was going to be able to get an accurate picture of what nutrients and supplements I was taking was to get out all the bottles and make a spreadsheet of each and every nutrient in them, with the amount of each vitamin, mineral, enzyme, etc., they contained.

That task took me a couple of weeks, because I kept getting confused by all the various ways different bottles displayed their contents. But I finally finished it, and I now know how much each pill costs me a day, how long a bottle lasts, and exactly what the total is for each supplement. I found one, D3, that I felt sure I was getting too much of, so until I can see a Nutritionist, I’ve cut that dose down considerably.

I’ve asked every medical doctor I’ve seen in the last month or so if they could refer me to a Nutritionist, with very little help in that direction. I saw my Neuro last week, and he gave me a recommendation. I have an appointment with that Dr. in November. Until then I’m basing my supplement regimen on my own attempts to do research.

I feel like I’m studying for a medical degree!! And I’ve about decided I know more about Mitochondrial Myopathy than 90% of the doctors I see.

My Neuro has finally decided that it’s time to try to do something about the ongoing pain I have in my neck, down my arm, up into my head, and in the mid back under my shoulder blade. So I had an MRI Monday. The tech really did all she could to make me comfortable, but lying still on my back on a hard surface is just something I can’t do. About half way through, the nerve from my neck going past my elbow and down to my pinky finger was causing such intense pain that I started having Myoclonic jerks – all that did was make her have to repeat one of the series – and make me lie there that much longer!

I haven’t recuperated from the MRI yet. Still feel completely worn out, plus I had another doctor’s appointment yesterday to make me even more tired. I did get some blood work done there that I’m quite anxious to see the results, compared to a year ago when they were so abnormal. I had another appointment scheduled for tomorrow, but I postponed it.

The epidural is scheduled for next week, and I’m trying really hard to remain positive about it. I had epidurals many, many years ago that gave me great relief, and I’m praying for the faith that I will get relief from the ones coming up. It usually takes several to get maximum results. My fear, that I’ve not totally overcome, is that the steroid will send me into a tailspin of weakness. That has happened to me twice in the last 10 years – once when I was on Parkinson’s meds, and last year when I had massive steroids to treat Angioedema (severe swelling of the lips and face from a drug reaction). Both of those times I was barely able to gather the strength to talk, eat, or move around at all for months afterwards. I pray I don’t have that kind of problem this time.

I do intend to continue with the series of posts I started about the various supplements I take, as it helps me to think through what the benefits to me are and understand more fully the mechanism by which they work to improve my energy.

I covet your prayers over the next week, and I pray for the faith to depend on the Great Physician, who DOES understand my disease completely!!!

Making Progress

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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!