Tizanidine plus Physical Therapy

Posted on by June 23, 2016  

My Neuro is trying me on Tizanidine (Zanaflex) for my muscle cramps. He also prescribed physical therapy to help me build up my leg and core muscles again. This med is a short life drug meant to temporarily relieve the spasticity of Multiple Sclerosis patients. So, like every other drug he has tried for me, this is another off label drug. There are no meds that are designed to treat Mitochondrial Myopathy. So he prescribes meds created for other diseases and disorders that involve muscle spasms or seizures.

Tizanidine

I’ve only had a few doses so far, but I can tell it takes about an hour to take effect and works for maybe 5 or 6 hours. Of course he has me on the lowest possible dose right now, with the prescription providing for three times a day if I need it. I’ve used it the last two nights to help me get to sleep. That’s when the cramps are the worst, because my mind is not occupied with anything else to distract me from the pain.

Physical Therapy

Yesterday was my first time to go to PT since I went last year after my cervical fusion surgery. It’s the first time I’ve had therapy for my legs in many years. And I’m the first client with Mitochondrial Myopathy this physical therapist has ever worked with. She found out very quickly just how weak I’ve gotten. I don’t think she was prepared for how easily I fatigue to the point of jerking and twitching. So she plans on alternating working on my core and leg strength to keep me from losing control of my muscles so quickly.

I have been trying to exercise here at the house more and more each day, but I am obviously still very weak. I’m much better than I was after trying to use Clonazepam. But I’m not self disciplined enough to make myself exercise as much as I need to. It’s just too easy to sit, since I don’t notice the cramps as much when I’m busy on the computer. So I am confident that having someone make me work harder than I want to is going to be good for me.

And I can only hope that the Tizanidine helps with the muscle spasms. Time will tell.

Weak Leg Muscles

Posted on by May 22, 2016  

I’m dealing with very weak leg muscles right now, and nothing I’ve tried has improved my walking. I had assumed that once I was off the Clonazepam my walking would improve, but it has not. My sinus infection has settled down, so my teeth no longer ache, thank goodness. But then I started having UTI symptoms. Since I still had a week’s worth of the antibiotics, I started back on those. And of all things – I threw up after the first dose, just as I had the first night on the antibiotics for the sinus infection. I definitely won’t be taking any more of THAT antibiotic!

My stomach has been so jangled with these meds that I started on a month’s worth of Align yesterday. Hopefully the powerful probiotics in that brand will get my digestive system back on track. I’ve been watching what I eat, but as weak as I feel I need to get as much protein in me as possible. I tend to stay on the borderline of anemia all the time, anyway, so eating foods with iron in them are a necessity. But foods with high iron tend to be hard on my tummy – a regular catch-22.

So I don’t know if I should blame my muscle weakness on the Clonazepam, or the infections, or the antibiotics, or the bland diet I’ve been on to settle my tummy. All I know is that I’m shuffling around all day, barely picking up my feet. It reminds me of the old Laugh-In gag with the dirty old man barely moving his feet and then falling over. It was funny way back then, not so much now.

I have a Neuro appointment mid June, so I’ll do what I can to get my strength back in my legs before then. If not, then hopefully he can suggest a different med to deal with my muscle spasms. I stayed off the old Methocarbamol while my tummy was so upset, but have tried a few doses the last few days. It just doesn’t help much any more. And the weakness does seem to be more in my legs than in my arms.

I am trying to walk around in the house as much as I possibly can, going up and down the basement stairs several times a day, but nothing seems to be making any difference. I lost a few pounds in the last few weeks, and I hope I keep that weight off. It seems reasonable that weighing less would put less of a burden on my legs. We’ll see what the Neuro says about that.

As you can tell, I’m discouraged right now, but I try to stay hopeful that the next doctor’s appointment will provide a new treatment to try that will actually help. Hope springs eternal. And I am thankful to God that I am able to do as much as I can do! Sometimes I need to remind myself of that.

Back to Methocarbamol – Not as Weak – Still in Pain

Posted on by May 10, 2016  

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

Posted on by May 10, 2016  

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

Posted on by May 10, 2016 2

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

Posted on by May 10, 2016  

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!!

Emotions and Muscle Spasms Stronger

Posted on by May 10, 2016 2

I’ve been having problems with acute emotional reactions for several months now – sometimes extremely nervous and very easily startled. Loud noises are especially uncomfortable – almost like I have super hearing. I had a lot of emotional lability years ago, when I was wrongly diagnosed with Parkinson’s.

For the last few years I’ve been living off of Methocarbamol muscle relaxers and Neurontin for nerve pain, and taking a large number of supplements in an effort to keep my nutrition level as high as possible.  But it was taking higher and higher doses of muscle relaxers to get any relief, and the shoulder jerking had even come back. So I asked my Neurologist to try something different.

Since I was experiencing heightened emotional responses, as well as more and stronger muscle spasms, he put me on a low dose of Clonazepam – an anti-anxiety med that is also used off label to calm muscle spasms. I started on the lowest dose, but now I’ve bumped it up a bit. It does seem to be taking the edge off the startle reflex and inappropriate nervous reactions, but the muscle spasms continued to worsen.

Trying Clonazepam

Several weeks ago my calf muscle cramped hard just as I put weight on that foot, and down I went, falling flat on my face. I was very lucky to only have a few bruises. The leg continued to jerk fiercely for several days, so I had to be extremely careful to not take a step without holding onto something. I called the Neuro’s nurse, and he added the Methocarbamol back with the Clonazepam.

I’m still spasming more than I was for a while, so I spend most evenings on the hot pad trying to relax the muscles.

I’m extremely thankful that I had already asked for more help from my Neurologist and there had been time to bump the Clonazepam dosage up a bit before a new turmoil hit our lives.

Care Giving Again

We are now back in the “care giving business”, trying to help a friend deal with a serious hospital stay and accept a Rehab Nursing Home situation. He’s not an easy person to get along with. He’s antagonized so many people over the years that he’s burned his bridges, except for a few families still willing to help him. It’s a shame, but he’s brought it on himself, with poor health management and lifestyle decisions and frequent angry outbursts over many years.

If it weren’t for the Clonazepam I don’t think I would be able to survive the emotional upheaval he seems to keep stirred up.

So for now at least my “new normal” consists of dealing with a cranky old man who is too sick to live independently. As his Nursing Home “Sponsor” there’s lots of paper work and responsibilities to deal with there, and of course Hubby and I will be visiting him once or twice a week.

The rest of the week I’m trying very hard to relax and rest as much as I can. I’m very thankful that my dear Hubby is so supportive, picking up the slack around the house when I don’t feel like doing much. We make a good team.

God finds good use for all our life experiences, so being care givers for our Alzheimer’s parents,  parenthood, plus teaching school for 29 years have prepared us about as well as anyone can be ready to deal with a curmudgeon in failing health LOL.

We covet your prayers both for him, and for us!

Post Physical Therapy

Posted on by May 10, 2016  

I’ve just graduated from Physical Therapy for my neck. I hadn’t planned on having PT after this particular operation, as my internet research seemed to indicate it was not a normal progression of healing with neck vertebrae fusion. But I had one bundle of muscles at the very base of my skull that just refused to relax. After all, they had been in spasms for years now, and were very happy continuing to cause me pain.

So my surgeon suggested PT. When I started, it was all I could do to get 20 pulls on the weakest yellow Theraband tubing. By the time I graduated this week I could do 40 pulls on the green tubing (red had gotten too easy). Of course I have to rest in between sets of 10 to give my muscles a chance to recover, but I was pleased with the improvement. They spent about 15 minutes of each session doing some rigorous massaging on my neck, trying to release the muscles. I even had one acupuncture session.

The last day’s massage did not hurt as much as the others had, so hopefully that spasm is beginning to release.

I have not been on any muscle relaxers now for about two weeks. I do get pretty uncomfortable in the late afternoon, but the new prescription was giving me problems, so I quit taking it. It’s ironic that Medicare made me stop using Methacarbamol, because “it would make me sleepy and at my age that increased the danger of falling”. HAH! The new one that’s supposed to be safe for me almost makes me Narcoleptic!!! I drop off to sleep out of nowhere when I try to use it. Will certainly be getting that prescription changed when I see my Primary next month.

Pain Level Better

I can’t complain about my pain level, as it’s SO much less than I had dealt with for years. By comparison this is like having a mosquito bite instead of being covered in huge poison ivy blisters!

Now I just have to be disciplined to continue exercising at home. We have plenty of Theraband lengths in all the colors, as well as weights from one pound and up. I had just started using two pound weights for a few PT exercises. I won’t be scared to do stuff now that I have been able to do supervised exercises.

I’m very thankful for my improvement and praise God for my bone and muscle healing.

Bones, Muscles, and Pain Equals Surgery

Posted on by May 8, 2016 2

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

Posted on by May 8, 2016 2

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.