↓
 
Some posts contain affiliate links, marked with an asterisk *
Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

  • About Me – My MITO Story
  • Privacy Policy
  • Contact Us
Home→Tags tics 1 2 >>

Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: tics

Post navigation

← Older posts

Jerking Has Been Much Worse

Day by Day with a Movement Disorder Posted on November 16, 2010 by DBMay 17, 2016  

I’ve postponed writing about the increase in my jerks and twitches over the last few months, hoping that it was due to more stress than usual and would go away on its own. But it hasn’t. I called my Neurologist about a month ago to let him know that I was getting worse, and his nurse called back to tell me to increase my dose of Primidone to 2 pills twice a day. I did that for a couple of weeks, with no help at all, so I called back. This time he said to take 3 pills twice a day. Well, that didn’t help, either.

So I called the other day to see what he’d suggest, and I went to see him today. He’s added Neurontin (Gabapentin) to my 3 at a time Primidone dose to see if that helps. He asked me if I had ever been on it, and I couldn’t remember that I had. It wasn’t until I just now did some Googling for Neurontin and Essential Myoclonus that some of my old posts on this blog popped up. I have been on it before, and I had really bad nightmare problems with it, and it didn’t help with the jerks, either. Since I will be in his office building tomorrow, while I’m there I’ll see if he wants to try something else instead.

I had shared some very disturbing to me loss of memory incidences of late, so he has scheduled an MRI for tomorrow. He also had some blood drawn to check for thyroid problems and B12 levels. I’ll probably get those results later on this week. I can’t imagine that my B12 would be low, considering what we eat, but a thyroid problem is certainly a possibility.

The jerks are nerve wracking for me and worrying my dear sweet hubby, so I pray that the added medicine will help. I pray that the blood tests and MRI will help my doctor decide what might be going on with my memory. It may just be a side effect of the very medicines that help me to have a good Quality of Life in other ways. Primidone is one of the ones I take that can cause memory problems, and I’m now on 3 times as much as I was originally taking! And the Triavil I take at night helps to keep my digestive system behaving itself. And he named one other prescription I was on that could cause memory loss, but I forgot which one he said. (ironic?)

Posted in Symptoms | Tagged blood tests, brain fog, Essential Myoclonus, Gabapentin, jerks, memory, MRI, Neurontin, Primidone, Quality of Life, thyroid, tics, twitches | Leave a reply

A Tiny Half Pill

Day by Day with a Movement Disorder Posted on February 22, 2010 by DBMay 19, 2016 1

Well, I tried cutting back my Primidone by a half pill, and I couldn’t even get through one whole day without it. By evening my whole face was twitching all over the place, and it was getting really painful. My poor facial muscles were just worn plum out. So I took a whole pill extra an hour before bed and put the hot pad on my face, hoping it would calm down in time for me to get some sleep. That worked fairly well, but my face still ached for the next couple of days. So I guess I won’t be trying to cut the Primidone again. Such a tiny pill, but it packs a wallop, for sure.

Now I am gradually adding back my supplements to my pill box. I’m in no hurry, because I’m afraid something I was taking was responsible for this last bought of ulcerated stomach it took me so long to get over. So far so good with that experiment. I’m also going to try cutting back my Triavil by one less pill a day. That was the other medicine besides the Primidone that my Neurologist said could be responsible for my poor short term memory. It’s worth a try, anyway. I would like to feel like my brain was sharp again. It’s felt dull now so long that I have forgotten what it was like to really be on top of things.

I am pleased with how much I’ve been able to learn about the new WordPress site for our Lost Toys Search Service. We hired a programmer to do the bulk of the work, but I was able to do a good bit of the cosmetic work myself, while he worked on all the behind the scenes code that makes the site work. I could never have done this by myself, as it requires knowing another programming language. But I was able to study the code and get the gist of how it works, anyway. All and all I’m proud of how much I was able to learn. It meant putting in lots of hours, but I have the time and enjoy the challenge. Now he’s working on redoing our Plush Catalog, so that will be another learning curve to master.

And it’s time I started working on our income taxes, too. I do that on the computer, so at least I don’t have to do the math. So my brain is going to be getting quite a workout for the next few months. I need every alert brain cell I can muster!

Posted in Medicines and Supplements | Tagged brain fog, myoclonus, Primidone, stomach, tics, Triavil | 1 Reply

Getting Better Little by Little

Day by Day with a Movement Disorder Posted on February 10, 2010 by DBMay 19, 2016  

I’ve had a good couple of weeks now that my stomach is getting better, and I’ve been working on building up my exercise time. I’m still stuck at 3 minutes at a time on the treadmill, but I am moving faster on it than when I started. Now I’m doing it twice a day most days, followed by 10 minutes on the recumbent bike, so I’m getting almost 30 minutes a day of hard (well, for me, anyway) exercise. I can really tell it when I have to climb stairs now. It’s not anywhere as hard as it has been.

I did take a dose of Pepto Bismol yesterday, however, because I felt like my stomach was irritated. Maybe I nipped it in the bud, before it had a chance to give me trouble again. I sure hope so. There must be some medicine I am taking that is really doing a number on my stomach, but it’s hard to know which one, since I take so many. I did wait a week after feeling better to go back on the vitamins and supplements, so maybe I’ll leave them off again this week and see if my tummy is OK. Then, instead of adding them all back at once, the way I did last time, I’ll do it one at a time, so I can spot the culprit. Nothing like doing a science experiment on myself.

I’ve seen my Diabetes doctor and my Neurologist in the last couple of weeks, and both are very pleased with my progress. My glucose test numbers have been consistently good now for over a week, so I’m proud of myself. I continue to lose weight gradually, so it looks like I’m shrinking myself out of the diabetes diagnosis!

I’m less than 10 pounds from my original weight goal right now, but I’ve bought some size 12 pants that I want to fit into and may continue to lose more if I need to, so I can wear them. I say quit, but I’m so used to eating this amount of food now that I can’t really imagine eating much more. I started my conscious effort to count calories and watch my sugar and carb intake back in April of ’09, so that’s a pretty well established habit now. Only occasionally do I feel hungry, and more often than not that is a sign my stomach is irritated, rather than real hunger. For some reason my body interprets low grade stomach pain as hunger. I’ve noticed that for a long time.

The Neurologist did give me some flexibility in how much Primidone I could take, depending on whether or not my tics and jerks returned. I had upped my dose by a half pill at a time while I was sick, because my face started its thing again. He says stress can effect the twitches, and I do believe it. So, along with trying to add the supplements one at a time, I’m going to try cutting back on the Primidone by that half pill.

I did ask him about my poor memory, and he said the Primidone and the Triavil could both be effecting that. My Gastro had suggested I try cutting back on the Triavil about the time I got sick, which I did, but I went back on the full dose when my stomach was so uncomfortable. I guess that’s another pill I can try backing off from gradually. Lots of tinkering with doses to play with for the next few weeks, trying to do the most good with the least side effects.

I’ve been working on learning about our new website format, so my brain has been getting a good workout lately. I’m pleased with what I’ve been able to understand, but there’s so much more to learn. This time I didn’t try to do it all by myself. I’ve hired a programmer to make the major change from one computer program to another, and that took a lot of the stress off of me. It sure is nice to be able to email him with questions and actually get answers! That’s customer service the way I like it!!

I continue to be optimistic, with goals to diet my way out of the diabetes and find the optimal doses of all my meds and supplements. And I look forward to being able to increase my exercise time gradually over the next few months.

Posted in Quality of Life | Tagged brain fog, diabetes, diet, exercise, Primidone, tics, Triavil | Leave a reply

Continuing to Feel Better – Had a Wonderful Christmas!

Day by Day with a Movement Disorder Posted on December 25, 2009 by DBMay 19, 2016 2

I think my stomach is finally healing, although I am still taking the meds. We enjoyed our family Christmas time yesterday, because one of our daughters had to work on Christmas. We just treated yesterday as if it were the 25th and exchanged presents and enjoyed being together.

I did the same thing I did for Thanksgiving – I did not worry about calories or glucose levels. It was a nice break from my usual diet, and I thoroughly enjoyed eating some of the forbidden foods that I love so much. My glucose numbers were high, but not really too high. I think I’m gradually resolving the diabetes problem as I continue to slowly lose weight. My target is to eat about 300 calories each day less than I actually need, which means I would lose a pound about every 10 days. I’ve been graphing my weight on Fitday.com, as well as keeping up with my calories there. That’s been a great motivational help.

I’ve not had any more problems with tics and twitching, since I added a half pill to each dose of Primidone. But I try really hard not to let myself get stressed or upset, and for the most part I’ve been successful.

We’ve had a great time helping people find their childhood lovies and backups and replacements for their children’s lovies. It’s very gratifying, and I think it has a lot to do with the great Christmas mood I’ve been in this year.

So I’m looking forward to 2010, and expecting to be in better health by this time next year!

Posted in Quality of Life | Tagged blood glucose, Christmas, family, FitDay, tics, weight loss | 2 Replies

Align = Feeling Better

Day by Day with a Movement Disorder Posted on November 14, 2009 by DBMay 21, 2016  

Well, the Align probiotic that my Gastro’s nurse told me to use has definitely helped my stomach. I’ve not been nauseated this morning for the first time in almost two weeks, and it feels great. I’ll continue to be more careful than usual with what I eat for another day or so, just to be on the safe side, and I’m going to finish out the month’s worth of the Align. Then I’ll go back to using the generic Acidophilus I’ve been taking daily for the last couple of years.

I did go back to using the Triavil, which is used to treat IBS, for the full 3 doses. My Gastro had just recently suggested that I cut back to 2 doses a day, and to see if I still did OK. I had cut back a few days, but then all this stomach upset hit, and it just didn’t seem like a good time to be changing things. So I’m not sure when I’ll try cutting out a dose just yet.

I did lose another pound this week, which isn’t too surprising, since I haven’t felt like eating a whole lot. I was actually hungry last night by supper time, and that’s another good sign that things are returning to normal. I haven’t felt like exercising, and really didn’t think it was a good idea while I felt so bad, so now I need to slowly work my way back into that routine.

The mouth tics subsided a couple of days ago, but I’ve been waiting to be sure they were under control again before jinxing it by saying anything about it. I’m not sure if the strong antibiotics neutralized the Primidone, or if it was just because I felt so bad. Maybe it was because everything, including medicine, was going through my digestive tract at high speed for a change. Who knows…

The important thing is that I can tell I am finally getting over it, and that’s a wonderful relief. Particularly since Thanksgiving is getting so close, I’m glad I can look forward to being able to eat with the family. I had already decided that I would ignore my glucose readings for that day and just enjoy being with everyone and enjoy the food. Then I’ll go back to the 1200 calorie diet I’ve been on since April and continue to limit my carbohydrate intake. I’ve been giving myself a splurge meal about once a month, anyway, so this month it’s for Thanksgiving.

In a effort to prevent another UTI, which started this whole snowball effect of digestive problems and Myoclonus tics, I’m trying to consciously be sure I have completely emptied my bladder each time I urinate. When I became so conscious of it, because it was painful, I realized that I haven’t been emptying totally, probably for some time. The nerves that send such messages just don’t work as well as they did when I was younger, or before the neurological disorder reared its ugly head. And, from what I’ve read, diabetics are more prone to this problem, too.

So, it’s a good day today, and I can look forward to many more, as long as I continue to persevere with a good healthy diet and exercise program and take my meds religiously.

Posted in Medicines and Supplements | Tagged Align, diet, elimination difficulties, Essential Myoclonus, exercise, Gastroenterologist, IBS, probiotics, tics, Triavil | Leave a reply

Playing with Doses of Primidone a Little

Day by Day with a Movement Disorder Posted on October 13, 2008 by DBMay 25, 2016 4

I’m caught in a delimma with no clear solution. When I was first put on the Primidone I had so much energy and enthusiasm that I really felt better than I had in many, many years. But from the start I could tell that the Bentyl I was on for my elimination problems was not going to be sufficient to prevent constipation. As that problem worsened I started feeling awful again, but at least not jerking.

So, I asked my Gastro to switch me to Triavil, which had been his first choice to control the spasms of my digestive tract previously. I had not been able to take it then, because I was on PD meds that contraindicated it. But, without the PD meds, the Triavil should have been OK.

And the Triavil did help the constipation problem, but it left me so drugged feeling that it took about a month to titrate up to the full dose. Now the problem was not jerking, not constipation, but just an overall exhaustion level that left me not able to enjoy life the way I had for that first month of Primidone. I want that ME back!!

So I made a slight change yesterday by skipping the 1/2 pill of Primidone at lunch, just to see if that was a better balance of medication vs Quality of Life. I really did feel better yesterday, and fine this morning, too, but I have noticed the beginnings of the mouth twitch again. We’ll see if the doping effect of the Triavil I had this morning, along with my usual dose of Primidone, will control that slight twitch. I plan to give this dose combination at least a week’s trial, just to see how I do.

I’m still making slow, oh so slow progress with house cleaning, with lots of computer breaks to give me a chance to sit down and rest for awhile. And I continue to add to our online catalog, so at least I don’t feel like I’m not getting something accomplished. I’m gung ho to have the yard sale this weekend, but at best hubby is lukewarm about the idea. Obviously I can’t do it by myself, so we’ll just have to wait and see.

Something else has changed and I really don’t know what to blame it on. My Rosacea is turning my cheeks, nose and chin areas quite red each evening, with the accompanying feeling of heat in the skin and the burning, tingling that goes with it. Often one ear is also beet red. I have a topical medicine that helps, but I can’t figure out what is triggering the flair up. Maybe nothing, as this is a very unpredictable disorder, which involves abnormal activity of the blood vessels near the surface. I’m sure lots of folks think I am an old lady who uses too much rouge, but I really don’t use any makeup at all, except for lipstick.

All in all I’m looking forward to a good week, anxious to see how my little dosing experiment goes, and hopeful that I can strike a good balance between medication and physical energy.

Posted in Myoclonus | Tagged Acne Rosacea, elimination difficulties, muscle spasms, Primidone, tics, Triavil | 4 Replies

Mouth Twitches, But That’s All

Day by Day with a Movement Disorder Posted on June 6, 2008 by DBMay 30, 2016 8

I got up earlier than usual this morning, as I normally do on Fridays, so I can map out a route for us to use to go on our Estate Sale, garage sale, thrift store hunt. Even though it was 4:30AM, my mouth was already having slight mouth twitches. The rest of me was still, though, so it’s not really that I am complaining – just documenting.

We did make some good purchases, and we always enjoy each other’s company, but it was awfully hot, and we ended up coming home a little earlier than usual. The mouth twitch continued to increase as the day went on, although it is nowhere near as bad as it is without the Primidone.

A very nice lady who was having a yard sale saw me using the cane to help myself get down her driveway, and asked me if I was recovering from leg surgery. After the slightest of pauses, which I am sure no one else would have noticed, the words came out of my mouth for the very first time. I told her I had a Movement Disorder. She went on to tell me how she had had two hip surgeries and had used a walker, and now used a cane. It was a very friendly, normal sounding conversation, but those words coming out of my mouth were momentous for me.

My hand and foot did not shake, my shoulder did not jerk, and I was reasonably stable, particularly when I used the cane. I am selective in when I use it, but I’m careful. After all, we have seen first hand what happens when an older person falls.

If I know a restaurant is going to be easy to maneuver, I leave it in the car. Hubby gives me a reassuring hand to go up and down curbs. But if we go to a sale, I always use it. You never know what the inside of a house will be like, and yards can be uneven or steep. We’ve stopped at some of the same gas stations and restaurants often enough to know which ones have handicap accessible bathrooms, and which ones don’t, so I usually know if I need to take the cane with me to help in the bathroom.

We do have the Handicap Placard, but I try not to use blue spaces unless I am having a bad day. I have used them a lot in the last six months, but not since I went on the Primidone. I look forward to many more days of using regular parking spaces!!

Posted in Myoclonus | Tagged cane, handicap accessible, Movement Disorder, Primidone, Quality of Life, tics, tremors | 8 Replies

Weaning Off Clonazepam = Thinking More Positively

Day by Day with a Movement Disorder Posted on May 21, 2008 by DBMay 21, 2008  

I’m down to a half tablet at night now, starting today. I will stay on that for three days, and then I will be through with it. I sense the depression passing somewhat, but certainly not all of it. I was depressed before they put me on it, just not as much.

I’ve been trying to work off as much of my tension and fears in the yard the last few days. I’ve spread the rich composted “dirt” and planted Centipede seed there. I don’t know if any of it will grow, but the weeds are sure enjoying the rich dirt. I can’t very well pull the weeds, as the grass is still germinating. The idea is to let the growing grass choke out the weeds on its own. Since that section of the yard is pretty much finished, I’ve moved to a small section of grass at the front of the house. I’m wetting it down at night and then working on digging all the grass weeds out of it the next day. The hoeing is very therapeutic. It’s kind of like a punching bag for me.

My biggest problem right now is that I can’t get out in the yard without setting off a poison ivy outbreak, no matter how hard I try to stay away from it and bathe as soon as I come in. I’ve been super itchy now for some time, because I don’t want to take any antihistamines on top of the Clonazepam.

I’ve been trying to read about Tardive Dyskinesia, which certainly seems to fit what I look like these days. I can’t even spell it right half the time, but Google very nicely suggests how to spell it for me. If that’s it, then I can add TD to my list of acronyms.

My mouth is definitely jerking and twisting more as the Clonazepam dosage is reduced in my system, but they have told me that there are other prescriptions they will try to reduce the tics and jerks, once I’m off this med. And I’ve started chewing sugarless gum a lot, too, as that keeps my mouth busy. I chewed so long last night I made my jaw hurt, but at least I didn’t have my mouth pulling to the side and twisting all around. I will definitely be using this trick in public, as I am extremely self conscious about the way my face looks now.

Our wonderful pharmacist has printed out all the prescriptions I have been on since he opened his store some years ago. I haven’t yet tried to track down where my records would be stored from the previous drugstore, but he suggested I try the CVS in a nearby town. We went without a drugstore at all for quite awhile there, as the previous pharmacist gave up his store to work for CVS. I haven’t called yet, because it is likely a waste of time. But I will call. I’ll just have to be in the mood to do it.

I’ve tried researching every medicine that I can remember ever being on, and a few are possible causes. But there’s nothing to be done, other than try to deal with the symptoms. Tardive means it’s a delayed reaction, so there is no med to “stop taking” to make the movements go away. Our family has always joked that an aspirin will put me to sleep, so I suppose it’s not surprising that I would be one who had a delayed side effect to some medicine I’ve taken in the past.

I haven’t been going to the Parkinson’s forum. I just don’t know what to say there any more. I guess I would still qualify for membership, since I’m dealing with a Movement Disorder of some kind, but I just don’t feel like I fit right now.

Hubby has been a big help, and isn’t mad at me any more about my reaction to the doctor’s news. He’s such a sweetie, and I know all this has been really hard on his emotions, too. I don’t know what I would do without him.

I ran across a copy of Michael J. Fox’s book, Lucky Man, at a yard sale not long ago, and I finished reading it last night. There were several things in it that made me feel better about myself. He talked about all the things he did to make his early tremors stop – how he tricked his brain – so he could hide it from the television and movie audience. That process of being able to temporarily stop a tremor with little mind and body tricks is one reason I thought I was suffering from a psychosomatic illness. I did not realize that at least some people with PD can consciously stop tremors momentarily. I have feared from the very beginning that being able to stop them for a brief while meant mine were not “real.”

So, as it stands now, I don’t have Peripheral Neuropathy, and there’s no way of knowing if I ever did or not. I’m inclined to think I did, but all the super nutritious foods we have been eating for the last two years, plus the Turmeric and all the vitamins and minerals I take, just healed the nerve pathways.

Parkinson’s is likely not the problem, although I have not ruled it out completely, as the doctor’s always hedge what they say about that. I do have a Movement Disorder of some kind, and I am getting past the point of blaming it on myself. That’s a good thing!!

Reading Fox’s book helped me, so I hope that reading this blog can help someone, too.

Posted in Uncategorized | Tagged antihistamine, Clonazepam, depression, emotional lability, exercise, Michael J. Fox, Movement Disorder, pharmacist, prescriptions, symptoms, Tardive Dyskinesia, tics | Leave a reply

Misery Loves Doesn’t Love Company

Day by Day with a Movement Disorder Posted on May 8, 2008 by DBMay 8, 2008 12

I am so counting the days until my appointment next week! The depression level I am feeling is so pervasive that I am not fit to be around right now. Hubby is doing what he can to leave me alone and not trigger another crying spell. Or worse, make me mad. We had an actual verbal fight last week, which is most unusual for us.

I knew when I worked in the basement while he was gone that he would be livid when he found out, but I did it anyway. I just needed to be “normal” for a little while so badly that I didn’t care that it would cause a fight. He won’t let me go down in the basement, because he is afraid I will fall. We do have a horrible mess down there, that needs cleaning out terribly, and I am much more impatient about it than he is.

I hate depending on someone else to get something done that I should be able to do myself. I hate being sick. I hate shaking. I hate being off balance. I hate being seen in public jerking all over the place. I hate using the cane and looking like each step is going to be my last. I hate looking old. I hate not being able to do any work in the yard long enough to accomplish anything.

But most of all I hate this horrible feeling that they are not going to find anything physically wrong with me, and that I am going to end up on some psychiatrist’s couch or on mind altering drugs. This Clonazepam is bad enough. I looked up the side effects, and depression and loss of balance are right there in black and white. I’m taking a med to stop some of the very things it will give me – doesn’t make much sense does it. I still have the strong mouth tics when I am the least bit upset, and my face is definitely beginning to contort, with right eyebrow high, left eyelid drooping over the eye, and mouth pulled to the left. It looks like I have had a stroke, and can’t control the left side of my face, but it’s actually quite the opposite, the muscles on the left pull it that way.

I did finally recuperate from the left leg weakness and pain left over from the EEG test, but my nerves have yet to settle back down from the super loud MRI last week. I’m crying at almost everything right now, and can’t stand noise at all. The loud TV commercials are bothering me so badly that hubby has started hitting the mute button when they come on. Last Sunday, for some strange reason, the young fellow who runs our sanctuary sound system had some of “his” kind of religious music piping in the auditorium before church. As far as I know that has never happened before. People were talking louder than usual to be heard over the extra noise. I sat there for a few minutes, and then told hubby we had to leave. I just couldn’t take it. So, we were some of the first folks at our favorite Chinese restaurant last Sunday. I went to church that night, and it was fine. But that morning was horrible.

I am not sleeping as well as I was, either. Some nights have been good, but there have been a few of the kind I used to have, where I am up at 3 or 4 in the morning. I am not using the TAP, as I just don’t think I can deal with it right now. Somehow I just have to make it through until next Wednesday.

I’ve completely rearranged one of the bedrooms we keep part of our plush lovies stock in, and I have worked some in the yard, trying to get the area ready to plant grass where I worked on the lasagna compost all winter long. I’m trying very hard to stay busy and focused on something besides me, but it ain’t workin’!!

Wow! That was quite a rant, even for me!! But it felt good to put it down on paper and acknowledge it. It’s real, and I’m not exaggerating. Hopefully, I will be able to look back on this post soon and be thankful it is all over. I always cling to hope, even in my darkest despairing times. God is good. AMEN!

Posted in Uncategorized | Tagged Clonzepam, depression, diagnosis, difficulty walking, emotional lability, hope, muscle spasms, pain, psychosomatic, Quality of Life, stress, stroke, Sunday, tics | 12 Replies

Had a New EEG Test Yesterday

Day by Day with a Movement Disorder Posted on April 17, 2008 by DBApril 17, 2008 4

I had my second EEG test yesterday, but my reactions to it were considerably different from the one I had two years ago. Back then, my Neurologist was trying to decide if I had Parkinson’s or not. My only symptom at that time was a very labored, slow walk, that he called Bradykinesia. I did not have any problems with the EEG test at all.

Things have changed a good bit since then. Now I have lots of tremors, jerks, and facial tics, that only get worse if I am in a stressful situation, or cannot get my mind “somewhere else”. I have discovered that when I am deeply concentrating on something, such as writing here on the computer, that the movements are quieted down considerably.

But put me in a situation that is the least stressful, or in one where I am just sitting with nothing actively going on, and I turn into the hurky jerky girl. Church is the usual place that happens. The only way to stop it that I have found is to go into a meditative state, finding some minute crack or spot on the wall to give my total attention to. It spaces me out, I don’t hear the sermon, but at least I am not bothering all the people who sit behind us.

And now I know that it happens during EEG tests, too. With nothing to occupy my concentration, following her directions to do fast open mouth breathing for 3 minutes to make me hyperventilate, and some very uncomfortable series of strobe lights that made me feel even more stressed, there just wasn’t any way to stop the jerks. The harder I tried to be still, as she had asked, the more I moved. She finally gave up and said at least it would let the doctors see what my brain was doing while my body was doing its own thing. She did tell me to open my mouth and stop pressing my lips together, so my mouth trembled and pulled to the left the whole time, too.

It took 45 minutes to complete the test, and I was exhausted the rest of the day.

The funny part was my hair!! They do not use the scull cap method, so each of these electrodes was stuck to my scalp with something like KY jelly. And there were lots of electrodes – maybe in the 20’s? When she was through and told me to look in the mirror, I looked like something from a Monty Python movie. I smoothed my hair down as best I could, but would have loved to have walked out just as I was, so hubby could get a kick out of it. If he had been the only one in the waiting room I would have, but it was a very busy place.

We were set to drive some distance to a family funeral after the test, so I had anticipated the hair goo and planned to stop at any franchise hair salon along the way and get my hair washed. So that was easily enough taken care of. I am glad I knew to expect that, as it could have been a real problem if we had been running short on time. I didn’t appreciate having to pay $12 just to get it washed and blown dry with no styling, but there wasn’t anything else to do. I had also brought a complete change of clothes and shoes, so I would not have to take the test in good clothes.

We did get into a situation of some very expensive parking at UAB, though, that just added to the very expensive day. We parked in the closest parking deck to the Sparks Clinic at UAB, but they would not validate his ticket, since we had not used the “right” deck. Of course, they had not told me that I should park in any particular one when they called to tell me the appointment time. So, instead of costing $4.50 to park, it cost us $15.00!!! We were not at all happy about that!! UAB will be hearing from me about that today!!

When we did get to Cleveland, the little town in north Alabama where the funeral was going to be, we ate at a very nice looking local restaurant. Not surprisingly, considering the way the rest of the day had been, their prices were high. So, we took the lunch special of the day. The vegetables were great, but the meat was lousy. The waitress seemed genuinely shocked when hubby complained about it.

I really was worn out by the time the graveside funeral was over, so we begged off on eating at the church with the family and headed straight home. This was my sister in law’s side of the family, so I really didn’t know that many people there anyway, and I am not comfortable in unfamiliar social situations. I have always been that way, but it’s gotten worse now that I jerk and twitch so much.

So we had a full day, one that I am glad to have over with. I have an appointment with Dr. Watt’s team in May, with an MRI to be schedules before then, so I will have to wait that long to find out the results of the EEG. Should be very revealing, since I displayed the full range of all my jerks, tics, smirks, and shakes while the brain’s electrical activity was being graphed.

I am optimistic that all these tests are going to show more than they did two years ago, and that they will be able to decide what is wrong with me with more certainty. Of course, I know there is no such thing medically in life as a certainty, but I can rely on God to get me through it all. Patience, Rosemary, Patience.

Posted in Uncategorized | Tagged Bradykinesia, diagnosis, Dr. Watts, EEG, exhaustion, gait, God, Movement Disorder, muscle spasms, Neurologist, Quality of Life, stress, symptoms, tests, tics, tremors, UAB | 4 Replies

Post navigation

← Older posts

Recent Posts

  • Mitochondrial Disease Treatment in Phase 3 Trial October 21, 2019
  • God’s Healing Sunlight March 31, 2018
  • Immune System Issues, Slowly Recuperating January 25, 2018
  • Flu Shot? Yes or No? December 20, 2017
  • Nutrition Information Sources December 14, 2017

Archives

Tags

balance blood glucose brain fog care giving depression diabetes diagnosis diet difficulty walking elimination difficulties Essential Myoclonus exercise exhaustion Friday Date Day gait gas Gastroenterologist GERD God insomnia MITO Mitochondrial Myopathy Movement Disorder muscle spasms nausea Neurologist nutrition pain Parkinson's peripheral neuropathy Physical Therapy prayer prescriptions Primidone PWP Quality of Life Requip Sinemet Sleep Apnea stomach stress symptoms tremors weakness Zelepar

Our Websites

  • Dirty Butter – Cherished Memories Dirty Butter – Cherished Memories
  • Dirty Butter Estates Collectible Shoppe Dirty Butter Estates Collectible Shoppe
  • Dirty Butter Plush Animal Shoppe Dirty Butter Plush Animal Shoppe
  • Plush Memories Lost Toy Search Service Plush Memories Lost Toy Search Service
  • Yesterday's Memories Yesterday's Memories

Blog Friends

  • A Catholic Life – A Family Dealing with MITO
  • Anuket's Crusade
  • Baby Food Steps
  • Gilbert Guide Blog
  • Gimp Parade
  • GodsPlans
  • Leafing
  • Life According to Liz
  • Life with Shaky
  • Living in the Slow Lane
  • Living with Alzheimer's
  • Mito Families!
  • Mozart Movement
  • My Father's Hand
  • My Life as a Mighty Mito Mama
  • My Own Arcadia – Spanish Language Blog with Parkinson's Information
  • Parkinson's Straight from the Horse's Mouth
  • Parkinsonism – Road to Diagnosis
  • Patients Like Me (All Kinds of Diseases)
  • PD Plus Me
  • Princess Leah Diaries
  • Shake, Rattle, and Roll
  • Taking Baby(food) Steps
  • Today with Pokie Too and PD
  • Wheelie Catholic
  • YOPD

Mitochondrial Myopathy Resources

  • Correcting Human Mitochondrial Mutations
  • mitoACTION
  • Mitochondria Research Society
  • Mitochondrial Bottleneck Cracked
  • Mitochondrial Cytopathy in Adults
  • Mitochondrial Myopathy Disease Foundation
  • Mitochondrial Vitamin Cocktail – A Guide for Patients
  • Muscular Dystrophy Association
  • NIH – Monkey DNA Swap May Block Mitochondrial Disease
  • Overview of MELAS
  • Research Match
  • Scientific American Article about Using Glutathione as a Marker
  • UAB Researchers Explore the Mystery of Mitochondria
  • When Cells Face an Energy Crisis

Nutrition Resources

  • Keto Calculator
  • Ketogenic Diet Resources
  • Ketosis Archives – Low Carb Food List
  • Maria Mind Body Health
  • Treating Constipation without Destroying Your Gut

Products I Use

  • The Energy Blueprint
  • Satori Qigong Flow Form
  • PureEffect Water Filtration
  • RubyLux NIR-A Infrared Bulb

Parkinson's Disease Resources

  • Parkinson's and Movement Disorders Center
  • The Brain from Top to Bottom

Peripheral Neuropathy Resources

  • About.com Guide to Peripheral Neuropathy
  • An Algorithm for the Evaluation of Peripheral Neuropathy
  • Brain Tumor Dictionary
  • Charcot-Marie-Tooth Association CMTA
  • Evaluation of a Patient with Muscle Weakness
  • How to Choose and Use a Walker
  • Jack Miller Center for Peripheral Neuropathy
  • Peripheral Neuropathy Fact Sheet

Radial Neuropathy Resources

  • The Wrist Drop of Saturday Night

Subcribe to Our Feed

©2021 - Day by Day with a Movement Disorder - Weaver Xtreme Theme Privacy Policy
↑
Translate »