Tag Archives: muscle spasms

Disk & Muscle Spasms Rear Their Ugly Head

Day by Day with a Movement Disorder Posted on by 2

For the first time in quite a few years, I’ve been having real problems with my neck and back for the last couple of weeks. It seems to get worse as the day progresses, so by the afternoon and particularly at night I’m really not comfortable at all.

I’ve tried Tylenol and Aleve, but I can’t even tell I’m taking them. I’ve also been having constipation problems again, so I’ve been reluctant to ask one of my doctors for a powerful pain med, knowing strong pain meds would just make the constipation worse.

I’ve been thinking the pain spasms would clear up on their own if I gave it some time. I’ve tried to keep moving my neck and shoulders as much as I can, used the hot pad, and have been using the inflatable neck brace for a short time each morning. It’s way too uncomfortable to use it for very long, but it’s extremely adjustable, and I have all the Velcro sections pretty well suited to my short neck. After I put it on I pump up the bladder in it and it gives a little traction. That helps for awhile, but it’s way too painful to use it after the spasms take over later on in the day.

The human adult head weighs about 10 pounds, and the neck and shoulder muscles have to be strong enough to carry that weight around in all kinds of positions all day long. Just imagine how long your arm would last without fatigue and pain if you were to lift a 10 pound bag of potatoes for 12 straight hours! Normally, our bodies are so wonderfully made that we don’t give it a second thought.

But I have Degenerative Disk Disease and Osteopenia, which means my disks and bones are not as healthy as they should be. I’ve had bulging disks in my neck and lower back for many, many years. So I guess I was overdue for a round of pain with one or the other. This time it’s the Cervical disk that seems to be the focus.

I’m not sure, but the Myoclonus may be making the spasms worse. I was in quite a quandary as to which doctor I should go see, my Neurologist or my Orthopedist. The trigger points seem to be on the right side, not near my left shoulder that does all the jerking, so I’ve decided the Orthopedist makes more sense.

So, it looks like I will be making an appointment with my Orthopedist next week.

YARD SALE today!!

Day by Day with a Movement Disorder Posted on by 7

Well, I’ve worked myself ragged this week helping move things out to the garage for our big yard sale, and now comes the moment of truth! Did we set the prices too high? Are they too low?? Should be a fun day, with beautiful weather.

Once hubby decided it was time to have one he really got busy, and there’s no way I could have done this on my own. I’m pretty sore from helping to move furniture around, plus lots more walking and lifting than I have been used to. It’s been good for me, as long as I didn’t over do it. Only time will tell on that one.

We managed to get quite a few of the boxes from my parents’ house out there, so that will free up some space in the house. Anything to cut down on the clutter will make it easier to get the rest of the last couple of years accumulation of stuff under control. I just have not felt like cleaning, and poor hubby has been doing the best he could to take care of me and take care of the house. I won. House lost. I’m sure not complaining, as he has done all the laundry for years, fixes meals, and waits on me like I was a princess. He’s the love of my life, and no one could ask for a better helpmete.

We swapped out recliners, bringing my mother’s recliner in the house and putting mine in the yard sale. Hers is a much smaller frame chair and really opened up the living room. I’ve slept in that recliner for several years taking care of Mama and Daddy, so I know how comfortable it is. It was a chore to make the swap with such bulky furniture, but I am glad we did. That is as along as our backs don’t complain too much!

We went to the dentist this week for our regular cleaning appointment, and this was the first time I had been back since the new meds and new diagnosis. I was fine until the next day, when I woke up with a very sore jaw. The muscles on both sides were aching from keeping my mouth open so long. At one point yesterday the right side started up with spasms. It was weird, because it made my eyeglasses move! I yawned some big yawns and did some exaggerated mouth stretches and managed to get it to stop, but that was another first for me. I hate to think what it would have been like if I were not on the Primidone. I probably would have bitten her hand off right there in the dentist chair!!

I’m back to the early rising again, and the change from Daylight Savings Time tomorrow is going to play havoc with my sleep for awhile, too. I get a lot done in the wee hours of the morning, but it sure makes me sleepy early in the evening. I’m like a baby getting my days and nights mixed up. But no amount of just laying there will help me go back to sleep, so I might as well get something productive done with my time, right?

One other thought before I put this rambling post away. I made the signs for the Yard Sale, and was very pleased with the results. It’s amazing how steady my hand is now compared to the way it was before the Primidone. I took drafting for 3 years in high school and taught handwriting in elementary school, so neat printing is something I used to be very good at. I had reached the point that my handwriting was difficult to read, let alone pretty. But this week I was able to free hand draw the letters and then go over the lines with a Sharpie and keep the ink where I wanted it!!! It was a wonderful moment for me, because it says so much about how much I have improved over the last few months.

Well, I’ve rambled on – not too surprising considering I’ve been up since 2AM – but feeling really good about my accomplishments this week. It may take a year, but I am going to win out over this messy house!

Playing with Doses of Primidone a Little

Day by Day with a Movement Disorder Posted on by 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.

Beginning to See Slight Improvement as I Go SLOWLY with Triavil

Day by Day with a Movement Disorder Posted on by 2

I am beginning to notice some improvement in my elimination difficulties, so it looks like the Triavil is calming down the erratic muscle spasms in my digestive tract. I’m only on half the dose I should be on, but I’m still being obviously affected by the side effects, so I will continue to go very slowly.

Tomorrow is our Date Day, and we’re going to visit our younger daughter and her family this weekend, so it’s not a good time to try to add the next half of a pill. It can wait until next week, and I will just be careful to follow the Bowel Retraining regimen that my Gastro has me on. Everything is convenient that he has me doing except for the Milk of Magnesia every 3 days as needed. Well, there are times when I need it, but I can’t be home the next day to deal with the consequences!! LOL!!! But other than that, I have been very careful to follow all of his directions.

I am beginning to feel better generally, too. My ulcers must be healing, as I don’t feel that dull pressure pain like I was feeling. I will stay on the restricted diet and continue to eat something with every pill dose until I am sure the ulcerated stomach condition has gone. I don’t have the jaunty step back yet that I had right after I went on the Primidone, but I certainly am moving better than I was for awhile there when the ulcers and antibiotics had me knocked for a loop.

I’m staying busy all day finding lovies for people and selling a few, too. I’ve even felt good enough to start a little housework. I have the greatest hubby in the world, who does everything he can to help me, which means he does the majority of the work around here. So when I feel good enough I do try to help, plus there are a few things he just doesn’t “see” that don’t get done unless I do it, if you know what I mean. ROTFL!!!

Added a Half Pill of Triavil this morning

Day by Day with a Movement Disorder Posted on by 2

I added a half pill of the Triavil this morning, so now I am on a whopping 15mg a day!! I can tell I have it in me. You should see the wonkyjawed labels I stuck on packages this morning to be mailed out. Not very professional looking, but nothing I can do about it. It’s odd … I thought I was putting them on straight, but as soon as it was stuck down I could see just how crooked it was. So, I tried to be more careful with the next one … and did the same thing again … THREE TIMES!!! Don’t let anyone tell you that meds don’t mess with your body in unexpected ways. LOL!!!

Anyhow, I’ll stay at this dose level until I can tell my body has adjusted to it and then try another half pill later on in the day. I am supposed to take it 3 times a day, but I’m not real sure if that’s with meals or spread out over the whole day. Since this is to help digestion I will have to call the Gastro’s nurse to find out. But I won’t bother her today. I’m sure Monday mornings are hectic, and this can wait. I’m in no hurry to work up to the full dose. I’d rather put up with a few more days of tummy pain and discomfort than be totally out of it for days, while my body adjusts to it.

I was asked to pray for our sick in Sunday School yesterday, and I lost it. I couldn’t continue, and the teacher had to step in and voice the prayer. There was a time when I could say a public prayer like that almost at an automatic level. It’s not that I didn’t mean it to be voiced to God, but it was also meant for human ears and that was an important concern in choice of words. Now my faith and connection to HIM have deepened so much through all that’s been going on the last few years that I can no longer talk to God with half my mind on the people who might be in the room with me. It’s extremely personal now, and it’s bringing tears to even write about it.

My level of gratefulness to Him for my muscle improvement is so over the top that I cannot pray any other way now. And I suppose part of it is the Emotional Lability that seems to go part and parcel with having a Movement Disorder. But the end result is that I feel close to God in a way that I never have before, and that’s a very good outcome of being sick.

Changing from Bentyl to Triavil for Digestive System

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You may remember when my pharmacist caught what would have been a potentially fatal drug interaction some months ago, when I was still on Parkinson’s meds. At that time my Gastro was searching for some way to help my digestive system to work properly. He had prescribed Triavil, but ended up putting me on Bentyl instead. I have been taking it four times a day ever since. It worked well until I started on the Primidone, but I have had increasing and persistent digestive problems ever since.

He put me back on the strict Bowel Retraining program, limited my food choices even more, put me on the high powered PrevPak to heal the ulcerated stomach that the Endoscocpy found, and expected me to improve. I didn’t. Then he tried a week of some new med called Alinia, but still not any real improvement.

So today, since I am no longer on the PD meds that contraindicated it, I start on Triavil.

It might help if I explained how all this tummy trouble is related to the Movement Disorder. When I am not on medicine for it, it’s real easy to see the uncontrolled movements of various skeletal muscle groups. The twitches, jerks, shakes, tremors, and awkward gait could not possibly be ignored.

But what cannot be seen is what is happening inside me. If I try to stick out my tongue, even now that I am on medicine, you see that it is in constant motion. The same thing is true of throat muscles. Sometimes I can hear the click of the soft palate spasms, and I really didn’t realize that this was anything unusual. I have always had times when I could hear that click. Then come the muscles in the esophagus, that should rhythmically move food down to the stomach, where coordinated muscle action churns the food, passing it on to the small intestines. After the coordinated movements of peristalsis push the undigested food into the colon, the body removes the liquid and eventually we eliminate the solid waste, again using coordinated muscle movements.

Gee, did you notice my intentional use of the word coordinated??? Well, mine AIN’T!!!! It’s no wonder I have GERD, stomach cramps, bloating, gas, constipation, and even problems using rectal muscles properly.

So the Neurologist helps with the skeletal muscle problems, but it’s my Gastroenterologist who helps me with all these internal muscle problems. He has found the right combination to keep me comfortable before, and I am confident that he will this time, too.

Tummy Is Still Complaining

Day by Day with a Movement Disorder Posted on by 4

I’ve been on the Prevpac high powered combination of two antibiotics and an acid reducer twice a day now since Monday, and my tummy is cramping more now when food or medicine touches it than it was before I started the medicine! Go figure. I’m going to call Dr. B’s nurse this morning, to see if there is something else I should be doing.

I have continued with the Glycerin suppository routine, but I quit the Milk of Magnesia every 3 days, as it did not seem necessary. I also moved a few of my medicine times around so that the Primidone is not the last thing I take before bed. That dose was going into a completely empty stomach, since I have to empty my tummy before I go to sleep, thanks to GERD. What I came up with is not ideal, but probably better than the way I had it. Now I take the Bentyl last, which is supposed to help the digestive muscles work smoothly and in the normal coordinated pattern, instead of spasms. Not sure that is any easier on my tummy or not, so I have several questions for the nurse.

She has been his nurse for a long time, and we have a good relationship. I have the highest regard for my Gastro and his nurse. They have both been very considerate and patient with me over the years. I never feel like I am being rushed through a mill. I have had a few doctors like that over the years, and I fired them all. I grew up with a family doctor who made house calls, so I like to use medical people who are willing to build a relationship with me. I am very thankful for the great doctors and staff who help me with all my health issues.

I continue to spend a lot of time on our Lost Toys Search Service, and on our online Catalog sales. I’m still a long way from having even half of our inventory cataloged, so it keeps me busy and mentally alert. There’s something new to learn almost every day, and that’s good for the old brain cells.

Speaking of sharpening the brain, have you tried the new Numbrix puzzle that Savant has added to her Parade Magazine article. It’s fun! I even found a place online to work the ones from past issues. I could get addicted to this puzzle very easily, and it’s a nice change from Sudoku.

So, tummy is still a problem, elimination is doing better, and brain is being stimulated. I’m not feeling good, so my energy level is low, but I am getting quite a bit accomplished each day.

All in all, no brain fog and no jerks …. I’d say that’s a good thing.

Mouth Spasms Still a Problem Sometimes

Day by Day with a Movement Disorder Posted on by 6

I have had a couple of days since the great improvement that have not been as pleasant as most have been, and yesterday was one of them. It starts out innocently enough, with a little mouth spasms in the mornings. But as the day progresses the twitches get harder and harder.

I have tried relaxation techniques, getting busy and trying to ignore it, and chewing gum, but once the twitch starts I don’t seem to be able to get it stopped. By the end of the day my whole face aches from the constant muscle spasms. The same thing happened late July 4th Holiday and all day Saturday, which I attributed to just being tired from all the family celebration and noise. But yesterday has no explanation.

When I tried to go to sleep I became aware of small muscle tensions and aches here and there all over my body, and I had one of the worst foot cramp episodes I have had in some time. Not only the toes, but also the arch went into full spasm, and it took pushing with a lot of pressure to get it stopped. I had to get back up and stand on my tiptoes as best I could to get rid of it.

Luckily I am sleeping well now, so once I was asleep it went away. Our bodies are naturally paralyzed in our sleep, so it gives some relief from the spasms. My mouth is behaving itself this morning, thank goodness. I can only hope that it continues to stay calm.

I am beginning to use an exercise/relaxation tape every other day now. I do pretty well with the upright exercises, but I am just pitiful on the floor. It’s all I can do to get down there and back up, let alone do the stretches. But I try. Then when I do get back up it takes me a good bit of moving around to stop the cramps in the tendons at the upper thigh. My whole body is clamped down tighter than a drum, and it’s going to take some doing to get any flexibility back. One day at a time, being a little more active each day and increasing my range of motion slowly, is the only way I know how to do it.

Even though the mouth problem and the foot cramps are very painful and aggravating, I am still so much better than I was that there is no comparison. I continue to be so thankful for my vast improvement and remain optimistic.

Primidone is HELPING!!

Day by Day with a Movement Disorder Posted on by 2

I’ve been trying to get to this post for several days now, and other things just kept getting in the way. Also, it looks like I have good news, and I didn’t want to celebrate too soon. The Primidone seems to be helping!!

I finally got in touch with Dr. Watts’ UAB Neurology team, and he sent in a prescription for Primidone on Friday a week ago. I took my first dose Friday night, and was pretty well looped all day Saturday, and almost as drugged feeling all day Sunday. But I was NOT jerking, and my hand was still! My walking was very odd, like I was on a boat or a dock. When I stood still I kind of wobbled, instead of shaking, as if it were slowing the speed of the movements down and increasing the amplitude, if that makes any sense. That lasted for several days, but then by about Wednesday I was only noticing the good effects. As long as the dose was in me, I did not shake, wobble, or tremor at all. Ignoring the slow walking, I was back to NORMAL! Even my handwriting improved. I was not depressed, but trying not to celebrate too soon, because the next step was to add a morning dose, and I wasn’t sure what was going to happen then.

I started taking a second dose in the morning as well on Monday. I do get a little woozy feeling for just a little while about an hour or two after I take it, but other than that, it seems to be helping a lot. I have a slight mouth twitch today, the third day I have had two doses, which I did not have Monday or Tuesday. But that is the only symptom other than the slow walking that I have! I do have to be more careful with steps – it’s like I can’t tell where my feet are.

I am not depressed at all with the Primidone, the way I was with the Clonazepam, and I am very hopeful that this medicine will work for me. I am still doing research on this medicine, but its brand name is Mysoline, and its primary use is in controlling seizures. They assured me that there were no signs of seizures from my tests, so this is what they call an off label use of the drug.

This medicine has a very long half life, and that means there is still plenty of the drug in my system when it is time to take the next dose. Actually, when I was taking just the one pill, I took it at 7:00PM and it did not completely wear off until four or five o’clock the next afternoon. I am also on the lowest dose, so there is room to go if I get used to the medicine and need to up the dosage.

Did you see me doing the happy dance????

I am so thankful to God for his tender mercies!!!!!!!!!!

Dyskinesia Wears Me Out

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Saturday was a fairly good day, but Sunday was not good at all, with lots of dyskinesia. By the time Sunday School was over, I was twitching and jerking pretty badly. The more my mouth jerks when I am in public, the more stress and self consciousness I feel, which just feeds more jerking. The chewing gum helps up to a point, but it does not stop it, plus my jaw gets tired after awhile from the chewing.

My walking becomes much more unsteady when I am going through one of these episodes, too. Nothing I did helped much on Sunday, but then Monday wasn’t bad at all, by comparison. I managed to get past 5:00PM again with almost no spasms. Then it came on gradually.

Yesterday, it started as a small lip twitch and jiggly foot in the morning and progressed to such constant movement by the end of the day that I was actually tired from all the muscle movements. My face ached, my toes and fingers were cramping, and I was generally miserable. I tried going to sleep early, just to get away from it, but I wasn’t sleepy. So, I took a long, hot shower. That helped considerably, relaxing the worst of the muscle movements. But by the time I was dressed again and my hair was dry, I was beginning to twitch all over again forcibly. That was the last straw. I took 2 Benadryl, and conked myself out. That helps me in two ways, as it helps to dry up the patches of poison ivy I continue to have, and it puts me to sleep rather quickly.

I’m still a little woozy feeling from the Benadryl, but other than that, I am nice and calm this morning. It almost looks like an every other day pattern, but there really is no pattern. I can’t determine anything I am doing, or not doing, that causes the difference in the days. I’ve decided to try to graph the strength of the Dyskinesia, as it is called, for maybe a week, and see if I can spot anything I am doing that makes it better or worse.

I’m writing this with only tiny little signs of the jerking and twitching, so I hope for a good day today.