Tag Archives: tremors

Changing from Bentyl to Triavil for Digestive System

Day by Day with a Movement Disorder Posted on by  

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.

Looks Like PRIMIDONE is THE Medicine for ME

Day by Day with a Movement Disorder Posted on by 2

Some medicines have what is called a Honeymoon Period, where they work really well for a short period of time, and then stop helping. I have had some like that in the past, probably including the Sinemet that was originally given as a Challenge – a way of semi diagnosing Parkinson’s. I did get much better way back then, but had such nausea issues with it that my Neuro did not keep me on it. I had good effect from the Requip that he changed me to, but then had to add Zelepar to that. So maybe none of them were anything for me but Honeymoon Drugs.

So, even though I have been so elated with the wonderful response I had to the Primidone, there was always a tiny little corner of my brain that wouldn’t give up the Honeymoon idea completely. I have been on it now for over a month, with only a half pill added to the original dosage, so I think I can consider this one to be a KEEPER.

Not that I am 100% back to “normal”. But then, since I am 65 now I’m not sure I know what normal is any more, anyway. LOL!! What I do know is that I enjoy talking to people again, I laugh a lot, I don’t jerk nearly as badly even on my bad days, and I feel truly blessed by God with this wonderful miracle. Hey, that’s a “normal” I can LIVE with!!

We don’t have cable or satellite, so, as the resident geek, it’s been up to me to try to figure out how to set up the HD Converter boxes we bought using the Government Coupons. We want to be able to continue to tape one show on our VCR while we watch something else, and that requires some very complicated hookups. There is so much about the words and terms they use in explaining all this that I am totally unfamiliar with. So, our boxes arrived in the mail a few days ago, and I have spent almost every waking minute trying one hookup, testing it, undoing it, trying another, repeating some over and over as I gradually understood the meanings of the directions and went back to correct mistakes I had made.

PHEW!! I was finally satisfied Friday evening that I knew how to do it, but I needed one piece of equipment that we did not already have. So, armed with my diagrams and the catalog numbers from the internet, we went to RadioShack yesterday. The young man took a look at the diagram and let out an involuntary “UGH!”. I agree totally.

Well, to make a long story short, he thought I would get better results with a different device than I had come in to buy, so I took his advice. I spent all yesterday evening, plus got up bright and early this morning, trying to make it all work with this new device, and finally decided he was wrong.

Hubby always goes out on his own on Saturdays, so he took it all back and exchanged it for the switch that I had originally decided would fix it all. I’m all ready for it when he gets home, and more than ready to quit spending all this time and energy on this stuff.

The stress it has put me under has been overwhelming, knowing that there is no one who knows enough about this stuff to be of any help. I’ve been angry and miserable, one after the other, over and over since Wednesday when I started on it. Hubby has left me ALONE!!! And I am glad that he has. He always thinks he can tease me out of a bad mood, but this time I think I would have bitten his head off if he had tried that with me. I never used to get angry like this. I was an only child and a “good little girl”. I never really learned how to argue or express anger until I was grown, as it was not “ladylike”.

Of course my mouth jerks and twitches came back when I was at my most upset points in all this, but they would be gone the next day. And even at that they weren’t as bad as they were before the Primidone. So I would say I have put it through a grueling test of its powers this week, and it passed the test quite well.

Now the boxes are set up, the TV and VCR work correctly with them as far as I can tell, and the Universal Remote is programmed for all the pieces. I am able to breathe again. But I did tell hubby to be sure he brought me some CHOCOLATE!!!

Half Pill More of Primidone is Working Just Fine

Day by Day with a Movement Disorder Posted on by 6

I hesitated to start taking more of the Primidone for the very first time on our Date Day, just in case it left me loopy, but I decided to take a chance. It was just this sort of extra exercise that made the Primidone wear off faster in the afternoon. I had no problem with it at all. Our very first Estate Sale involved a long walk up a steep driveway to get to the house, and yet I was still steady yesterday evening. So that appears to be the correct dose for me right now. As I gradually increase my activity level, I may have to adjust it again. but for now – it’s great!!

I’m still bubbling over such great news and wonderful relief from the jerks, shakes, and twitches. Hubby has been teasing me about how much I’m talking now. He drawls, “It sure was quiet around here,” and sounds just like my Daddy – always finding some way to say something negative. He is teasing, and we both laugh every time he says it. It’s a shame my Daddy never learned to look on the bright side of things, but I learned my lesson well from him and don’t want to ever be that way.

And now I really do have something positive to shout from the rooftops!!! God has blessed me with a wonderful new lease on life, and I can’t give Him praises enough!

Praise GOD from Whom All BLESSINGS Flow!!!

Day by Day with a Movement Disorder Posted on by  

I can’t praise God enough for how I’ve been lately. I really am doing great, and it’s wonderful to be able to say that. Some days I don’t have any abnormal movements at all, and on others I have only tolerable ones. I have been on cloud nine now for a couple of weeks, and it looks like I’m here to stay.

I have noticed that as I become more active and expend more muscle effort that the medicine wears off sooner in the evenings. The Movement Disorder doctor said to call him back in two weeks, and he would discuss raising the daytime dose maybe a half pill at that time. Sounds good to me. He just doesn’t want me to zombie out on the Primidone, and I don’t want that, either. He mentioned physical therapy to help with the slow walking, but that just does not seem necessary to me. I know how to be safe, and as I feel better I am naturally increasing my physical activity. I’m so used to listening to what my body is telling me that I can judge pretty well when it’s time to quit.

My house certainly appreciates the extra attention I have been able to give it lately! There’s plenty more to do, though. I have about two years of clutter to wade through. When you feel as bad as I have and as unsteady as I have it’s just easier and safer to ignore a lot. Hubby has kept us in good meals and clean clothes, but the “stuff” has piled up.

We celebrated our 44th Wedding Anniversary yesterday. I wrote a long post about it on our Yesterday’s Memories blog, so I won’t repeat that here. The fantastic thing is that even though I was exhausted at night from all we did during the day the last two days, I feel fine today. My muscles are definitely adjusting to more activity.

So I leave this post with a positive outlook and a heart full of thanksgiving!!

Praise God from who all blessings flow! Whooopppieeeeeeeeee!!!

Mouth Twitches, But That’s All

Day by Day with a Movement Disorder Posted on by 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!!

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!!!!!!!!!!

On Days and Off Days

Day by Day with a Movement Disorder Posted on by  

I am definitely less depressed since gradually cutting the dose and frequency of the Clonazepam, but I still have on days and off days. Thursday I went until sometime after 5:00PM without any facial tics at all, and then spent the whole evening jerking like crazy. When I’m like that, my face contorts, my left shoulder jerks forward, and my foot dances a jig uncontrollably. I was on a half pill only at night then. Friday I jerked and twitched all day long, also on the half pill dose. I also had a huge startle reflex while we were out on our Date Day, something I haven’t done to that extent in some time. Now today, Saturday, my mouth is all quiet and well behaved so far. I did not take even the half pill of the Clonazepam last night.

I had called twice to UAB, trying to get them to go on and send in the prescription for an alternative to the Clonazepam, because our drugstore would be closed from Friday evening until Tuesday. They did not get it called in, nor did I get a callback from a member of Dr. Watt’s team. The receptionist did tell me on my second call that Dr. D was sick. He is the member of the team who apparently is the one I will be seeing the most. So, I have to assume that is why nothing was taken care of.

I have found that I can at least mask what my mouth is doing in public by chewing sugar free gum. I’ve always been a gum smacker, so I am trying to get out of that habit, and reach a point were I can slowly chew and control the horrible twisting, twitching, and jerks my mouth does so much.

The right foot continues to do its own little dance, which makes me feel unstable as I stand still or walk. Going up and down steps is harder when there is no way of knowing what my foot is going to do at the moment. So I am still using the cane everywhere except here in the house and at church. The few steps I have to deal with at church are entrances, and hubby is there with me going in and out, so I can skip the cane and feel a little more inconspicuous.

I should have taken the last dose of the Clonazepam last night, but I thought it would be wiser to see how I would be today, rather than being even more unpredictable than usual for church tomorrow morning. Since I’ve been OK today, it looks like the decreasing dosing was done slowly enough to not leave any withdrawal symptoms. But there is now way of knowing how I will be in the next minute, let alone tomorrow for church.

I continue to stay busy searching and posting on our Lost Toy blog, and have been able to help quite a few families, thanks to all the folks who read the requests for help and search for them, too. If you have never been to that blog, you ought to go read some of the stories and try to help them. It’s a very satisfying feeling to help them. And I continue to add to our online Plush Toy catalog, too, so I stay very busy.

Oh, and I mustn’t forget to mention that it looks like our Centipede grass is actually beginning to come up in the composted side yard. I worked for a little while this morning in between the shrubs and the driveway, digging that section up and trying to get as many of the weeds out of that section as I can. We can plant Centipede here until July, so I should have it ready long before then.

Take each moment as it comes, Rosemary – a lesson I am being taught daily.

Unexpected Aftermath of EEG Test – Still on Clonazapam

Day by Day with a Movement Disorder Posted on by 4

I had an EEG back when my own Neuro was trying to decide what was wrong with me, so I knew what to expect. Well, I thought I knew what to expect. My “good” left foot has been extremely painful and difficult to walk on for the last few days. At first I blamed it on all the walking we did at the cemetery in my Sketchers, which I now use as Sunday shoes. But I don’t think that was the culprit.

I was on the exam table for about 45 minutes, jerking and shaking the whole time. I can’t lay down flat like that without setting off back spasms, so I put my good knee up and had my bare foot pressed against the thin pad of the exam table. I must have been pushing down on my foot a lot harder than I realized, in an effort to bear the discomfort of all the jerking. It is gradually improving, but I noticed yesterday that my thigh is also aching. My foot was hurting so badly that I had not even noticed the leg. So, I’ve decided that’s what is wrong with my foot, rather than my shoes. Those are the only unclunky looking shoes I have been able to wear, so I am glad that they probably did not cause my good leg to give me so much trouble.

You are supposed to go up with the good and down with the bad leg, so it was comical yesterday at church trying to figure out which foot to lead with. One hurt, and the other shook! LOL I decided it was safer to lead with the painful one, rather than the jerky one. At least I was less likely to fall.

Speaking of shaking, the Clonazapam may be helping some, particularly with my mouth, but I am staying in a stupor, sleeping through my morning pill alarm, and just generally fuzzed out. He says it will go away — I sure hope so. Otherwise, I won’t be able to take this med.

I can’t see any improvement in my foot or my shoulder jerks, though. I’m waiting now to hear about my MRI appointment. I am going to call them today, since we still have not heard from them.

Patience … still haven’t learned it.

Had a New EEG Test Yesterday

Day by Day with a Movement Disorder Posted on by 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.

Been to the Physiatrist and I’m Still Very Busy

Day by Day with a Movement Disorder Posted on by 9

I saw the Physiatrist yesterday. He’s the doctor who had to review my records before he would agree to even see me. As it turns out, oddly enough, he is the person who did my original EMG and Nerve Velocity Tests.

I was extremely pleased that he did a complete checkup, rather than just asking about my neck. He went through a complete neurological exam, but didn’t venture much as to what he thought was wrong, other than to say Dr. Watts was the one who would be able to say what is going on. He did say he was sure I had some kind of Movement Disorder, but he didn’t think it was Parkinson’s, either.

He went over some options for the neck pain that has persisted since November. We agreed to try the least possible first, particularly since I will see Dr. Watts in less than three weeks. It’s hard to imagine that something I’ve waited so long for is almost here! Anyway, the Physiatrist gave me a prescription for Lidoderm patches that I cut and apply to the trigger points of this pain. They are basically Novacaine that goes through the skin to the muscle. He felt like I would not have any stomach problems by doing it that way.

I put half on the top of my shoulder near the neck and the other half just below the shoulder blade, next to the spine. Those are the spots that really scream if I sit or stand unsupported for very long. Even the time to wash a full sink of dishes or eat a meal at the table is usually enough to set it off, and sitting on the church pews has been very uncomfortable.

I felt a little bit light headed soon after putting the patch on, but that could have been for any number of reasons, as I had not eaten breakfast yet. I am hurting now, but maybe not as bad as usual. Obviously, one day’s use can’t calm down this spasm, so I will just have to see how I do. The prescription is for 3 months worth, and thank goodness I have Medicare and good insurance, as it was listed at over $500!

I’ve been going around in circles lately trying to get a whole lot of things accomplished all at once, and not getting much finished at all. We have started on our taxes, but there are some parts that I must work on before the exact number can go in the form. I’ve been doing them with software for years, but this time my hubby sat down next to me and we went over each part together. That helped me stay calm, plus he needs to know how it’s done.

I’m also trying really hard to get as many of our toys in our online catalog as I possibly can, and I have run into several road blocks I had not anticipated. I had to learn how to use a Shopping Cart program, upload and download files to Google and our ISP to make a searchable data base, and I have been driven half crazy trying to get the catalog to show up properly in Google Base. OK, I know if you are not using the programs yourself that was just a bunch of gobbledygook – but they were very confusing to me, too, and I am definitely not learning new things as quickly as I once did.

I’ve had printer problems and had to buy a new one yesterday, so I couldn’t mail out some orders today, because I hadn’t figured out how to set up the network part of it. That actually worked pretty well, once I did understand the directions, and it even has an answering machine and fax included in it! I feel like I have my own home office now.

Our Search Service is keeping me extremely busy, too, and we have made a few sales from it, as well as helping several very happy parents find the lovie they needed, whether we made the sale or someone else did. I am pretty much caught up with answering the initial request, but I am miserably behind at getting the ones I could not find turned into blog posts.

I feel bad about that, as some of these parents sound so desperate, but hubby is still computer phobic, and that leaves this part of the business entirely up to me. He’s great at scouring the yard sales and thrift stores several times a week when he goes out on his own, and we thoroughly enjoy our Friday Date Day, and he helps a lot with the packing. He takes everything to the Post Office, too, and he has a lot of input about how to do the business side of selling. He just doesn’t want anything to do with the computer part.

Well, enough about all that. It just goes to show that I am staying busy with lots of different parts of my life – and our messy house proves it. Something had to give – so…..

Hopefully it won’t be so long before I post again.