Tag Archives: God

CT Scan and Allergy Testing

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CT Scan

I saw my new ENT Thursday. He has read through the reports from my old ENT. And he wants me to have another head CT scan to see what my sinuses look like now. Last one was in October, before I had the FESS sinus surgery. As soon as insurance approves, I will have the CT scan and allergy testing.

Allergy Testing

He thinks I’m still dealing with infection, as well as allergies. So he scheduled me to have allergy testing in two weeks. He took me off of all antibiotics, steroids, and antihistamines until after the allergy testing. It took just one day for my tear duct to puff back up when I stopped the antibiotic eye drops. It’s not painfully hard the way it was, but it’s noticeably swollen. And that means a lot of my tears are coming out of the eye, instead down into my nose.

Praying No More Surgery

He also mentioned the possibility of having Balloon Sinuplasty done. Hopefully the CT scan will not indicate a need for that. I didn’t tell him just how much I’m hoping I don’t have anything else like surgery done. The thought really scares me, considering how gross the recovery was for the FESS surgery. No need to say anything until the CT scan results are back. But of course I’ve been researching the Balloon Sinuplasty surgery.

I’m praying that dealing with my allergies will be sufficient to stop this long term sinus problem. I’ve been plagued with thick post nasal drip for well over a year now. I’ve been hoarse from all the drainage for months. And really, I’ve had sinus infections that were hard to get rid of for many years. That’s part of the reason why I’ve been sleeping in a recliner for many, many years. Between my lower back, my neck, and my sinuses – lying flat is just not an option for me.

Sneezing

I sneezed so hard and so many times a few days ago that I’ve aggravated my neck. The fused vertebrae really are complaining about the whiplash effect of those hard sneezes. So I’ve been taking Goody Powders until lunch time and Methacarbamol muscle relaxer later in the day. I’m also sleeping on a hot pad again. And when I have enough warning, I’m holding the back of my neck when I sneeze.

MITO?

It’s always hard to know what, if any, of my medical issues are MITO related. I do know for sure that it took my mucous membranes longer to heal properly from the FESS surgery. And I know that when I don’t feel well I REALLY don’t feel well. Everything seems to hit me harder than most people. I’m what people used to call “puny”.

So I’ll put up with the worsened allergy symptoms while I flush all the meds out of my system. If I’m not clear of antihistamines, antibiotics, and steroids when I have the allergy testing done – the results won’t be accurate. I’ll do what I can to keep my sinuses clear with the neti pot, and I’ll continue to pray for healing.

God is the true Healer – doctors only work for Him!

 

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!!

Emotions and Muscle Spasms Stronger

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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 (more recently called Pseudobulbar affect) 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!

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!!!

More Tests – Still Waiting

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I went back to my Neurologist this week, since I’m still having lots of weakness, odd gait, balance issues, and other symptoms, such as my voice getting very hoarse the more I talk and the later in the day it gets. He had a Jolly’s Test done, which measures how much the muscles in one hand fatigue as they are repeatedly stimulated with an electrical shock.

This was not a fun test at all, but I got through it. Trying to joke a bit, I said something to the technician about this must be what a Taser feels like – and she said the test shock was stronger than a Taser! No wonder it hurt so badly! But, the good news is, my Neuro said he would call that day if the test came back abnormal…and he did not call!

I did have more blood tests done, however, and the results won’t be back until next week. I’m to call and see how those turned out, and then I guess I see him again, probably for more tests. I’m SO ready to feel better!!

In the meantime, since I am not jerking the way I was for the last year or so, he’s cut back my Primidone dose, and I’ve stopped my Triavil, Simvastatin, and Magnesium supplements. I don’t like stopping more than one medicine at a time, because you can’t tell which one was the culprit, but I’m getting desperate now. So I’m not doing this the proper way. I stopped them all at once. So far no additional jerks on the lower Primidone dose, but it’s only been two days. I can’t tell any difference yet, but I can hope that cutting down on my meds will do the trick.

We covet your prayers that God will guide my Neurologist in the right direction.

So How Common Are Myoclonus and Dystonia?

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I had an interesting conversation today after church with the lady who happened to be sitting behind me. She asked me if I was sick, but I knew what she was referring to, so I told her about having uncontrollable jerks and apologized for disturbing her worship. She, of course, said not to worry, but asked what I had. When I told her I had a form of Myoclonus, she told me she had Dystonia! What are the odds of two people sitting that close to each other in a little country church, both with relatively rare Neurological Disorders!!

I tried to do some research to find out just how common these two Neurological Disorders are in the USA, but only found one site that gave a number I actually could understand. Most sites were comparing percentages in different populations all over the world. The WrongDiagnosis.com site listed both Myoclonus and Dystonia as being classified in the USA as Rare Diseases according to the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH), which means no more than 200,000 people have been diagnosed with each of these Movement Disorders in the whole US. There are only about 2,000 people in our town!

I don’t know if she grew up in this town or not, but we’ve only lived here as adults. I do have very serious Neurological diseases in my family history, and I would be very interested in finding out if she does, as well. My interest in where she grew up stems from the fact that our town had at one time the worst EPA rated toxic site in the state!!!

Even though we don’t have the same Disorder (I choose NOT to think of it as a disease!), having someone else I actually know who battles some of the same demons I do was quite a surprise. I look forward to more conversations with her in the future.

So, exactly what is Dystonia, and how is it different from Myoclonus?

The best place on the internet to learn about Neurological Disorders is We Move. They have a forum with sections for each disorder, and I have found the encouragement of other people who comment there who battle Myoclonus to be very helpful and comforting.

This is the overview on We Move of Dystonia:

“Dystonia is a neurologic movement disorder characterized by sustained muscle contractions, usually producing twisting and repetitive movements or abnormal postures or positions. Almost all dystonic movements share a directional quality that is typically sustained, sometimes for an instant, as well as a consistency and predictability Dystonia movements are directional, forcing the involved body part or region into an abnormal position, which is consistently present.”

Put in simple terms, various muscle groups contort in some way and tend to stay that way.

If you saw the TV show “The Doctors” here in the US this week you saw a young woman who had a severe case of Dystonia who was helped tremendously by DBS (Deep Brain Stimulation) brain surgery.

Myoclonus is defined this way:

“The term myoclonus comes from the Greek words for muscle (myo) and tumult (clonus) and refers to sudden, brief, shock-like movements. These movements may be “positive” or “negative.” Positive myoclonus results in contraction of a muscle or multiple muscles. In asterixis, or negative myoclonus, there is a brief loss of muscle tone and then the tightening (contraction) of other muscles; this results in a flapping-type motion. These movements, which cannot by stopped at will (nonsuppressible), often have a characteristic saw-tooth pattern, and they usually disappear during sleep.”

So Myoclonus involves various types of jerking or flapping motions.

Half-Life, What Is It?

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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!

Off the Depakote, On to Lamotrigine

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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.

Great News about my Diabetes!!

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My doctor is very proud of me for having an A1C of 5.5 two times in a row. That means for the last 8 months I’ve had a better sugar level than most people without diabetes! He actually said I was no long Diabetic, and he halved my Metformin dosage. To say the least I’ve been celebrating this week, and with Christmas right around the corner I’m sure I’ll indulge more than I did last Christmas! After that, I’ll have to go back to eating more properly and checking my blood glucose levels, but for right now…we’re just celebrating.

I could never have lost and kept off the 60+ pounds over the last almost 2 years now if it hadn’t been for my dear sweet hubby, who does the grocery shopping and cooking. He’s read everything he could get his hands on ever since I was originally diagnosed with Parkinson’s way back in 2005 to be sure I eat the very best possible diet of high antioxidant Super Foods, as have I. And he checked Nutrition labels on every processed food he bought for the last 2+ years for sugar and carbs. I was determined to beat the Diabetes, if at all possible, but I wouldn’t have done it without his considerable help. And we wanted to alleviate the Movement Disorder symptoms as much as possible, too.

So here’s a great big {{{{HUG}}} to the love of my life!

As for the jerks of my current diagnosis – Essential Myoclonus, the news isn’t as good, but maybe I’m doing better than I was. The Depakote plus Primidone combination seems to work a little better than the Neurontin plus Primidone did. It just doesn’t take much to break through and send my shoulder into a jerking fit. The least bit of stress, and it can go on for what seems like hours. Like at the dentist the other day. I jerked in the chair the whole time he did a filling. I like my dentist, but I have childhood memories that have left me dealing with high stress every time I go. I’m better than I used to be, but all the jerking reminds me of how deep seated this fear is.

So hubby and I are celebrating our 50th Christmas together (if you count the years we dated or were engaged), with our family in good health. We are very thankful to God for seeing us through some rough times, but I have faith that times are going to get better.

I pray you and your family will know the Spirit of Christ during this Christmas season.