Tag Archives: Primidone

Getting Better Little by Little

Day by Day with a Movement Disorder Posted on by  

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.

Not Getting Better Yet

Day by Day with a Movement Disorder Posted on by 3

Well, I’m on my second round of the Carafate, and my digestive system is still not back to normal. So I called my Gastro again and basically asked for an Endoscopy, which I will have on Monday. I’m hoping he will see the cause of this constant nausea and be able to treat it more effectively. It’s been a good six weeks of this unsettled feeling, and I’m ready to be rid of it!

The Myoclonus is behaving itself, at least. I haven’t had many more jerks and facial tics since my Neuro changed my prescription of Primidone to 1 1/2 tablets twice a day. Now if I get cold, which is easy for me to do, that’s another story. I do get the occasional shoulder jerks then. Also, I can tell that my mouth tics are just barely under control, as if they are just waiting for a good reason to start up again. But I can live with the dose I’m on now, and I don’t want to take any more of it than I have to.

Eating out continues to be a challenge with the blood glucose levels. You’d think as many diabetics as there are in the US that restaurants and fast food places would be more diabetes friendly, but they’re not. Well, I guess I’m not really being fair to them, because I would find it easier to eat out if I could eat lettuce, as the vast majority of places do offer salads. I can enjoy a spinach based salad, but not a lettuce one. I’ve probably been off lettuce for the last 20 years or so! Since diabetics can’t have baked potatoes or mashed potatoes, either, that severely limits the sides that I can order in most places. Luckily I like sauteed mushrooms, and can usually get those.

Since I’ve not been feeling well, I’ve not been exercising, either. And the scale shows it, as I have not lost any more weight. We bought ourselves an early Christmas present the other day, though, and maybe that will help. It’s a manual treadmill. I had tried out several motorized versions some time ago, and we agreed that I would not be safe on one of them. With the manual one it’s very easy for me to stop and get off, if I feel like I need to. It’s an extremely simple one, with just the one incline level, so I’m only walking for 2 minutes on it right now. We have the resistance level set to a point that hubby can use it, too. So we’ll leave it there until I build up some leg strength again.

So I’m hopeful that the endoscopy will show what needs to be done to stop the nausea, my blood glucose continues to be under control when we eat at home, and hopefully the treadmill will jump start my weight loss again.

Puny

Day by Day with a Movement Disorder Posted on by  

It’s not been a very good last couple of weeks for me. It all started Saturday a week ago when I woke up with a urinary tract infection. I didn’t think trying to tough it out until Monday sounded like a very good idea, since I’m diabetic, so we went to a doc in the box early that morning, and he confirmed my diagnosis.

They gave me a shot of antibiotic, plus a prescription for an oral antibiotic and some kind of urinary tract analgesic that turns urine blue. Also, since I had just finished taking a round of antibiotics for a root canal, they gave me a prescription for Diflucan, so I could deal with the likely yeast problem all those antibiotics would cause.

It took several days before I really felt less pain on urinating, but by then my stomach was upset from all the antibiotics. I started eating less and eating mostly bland foods, so my whole diet has changed. I also had some Greek yogurt and blueberries, thinking that would be good for both the tummy and the potential yeast problem. Nothing I’ve done so far has gotten rid of the nausea, although the diarrhea is under control. For now I’m sipping on diet caffeine free ginger ale.

I talked to my Gastro’s nurse today, and she told me to start taking Align, which is, according to her, the best probiotic I can use. I told her I was taking a generic acidophilus daily anyway, but she said this Align would work better to replace the good bacteria that the antibiotic killed off. She also said to stay away from spicy foods or anything fatty or acidic. I’d already been doing that. But, she said it would be OK to eat the raw vegetables we normally eat for lunch, which I had not been doing.

And then, out of the blue, on Sunday afternoon my mouth started the tics again. My tongue is thrusting, and my lips are involuntarily squirming around. I hate when it does that. By the end of the day my whole face hurts from all the extra movement. This is the first time I’ve had any of these Myoclonus jerks on my face since I went on the Primidone.

I had hoped it would go away on its own overnight, but woke up to the same thing Monday through today. So I took an extra Primidone pill and have been doing that ever since. So far it’s limited the squirming somewhat, but not completely. I’m hoping that when my tummy gets back to normal and I feel better, that the Myoclonus will behave itself again. If not, I’ll have to put in a call to my Neuro.

So I’ve not been having a fun time the last few weeks. I’m still looking forward to Thanksgiving with family, so I’ve just got to get better before then!

Went to my Neurologist yesterday

Day by Day with a Movement Disorder Posted on by  

I saw my Neurologist for my 6 month checkup yesterday and got a few questions answered. I was right that my brain fog is coming from the Primidone, and not from the EM itself. He was also quick to agree with me that the Neurontin had caused the terrible nightmares and grogginess that led me to go back on the Primidone. He said there’s really nothing better that I could take that might not constipate me so badly, and was surprised to see all that I take each day just to keep my digestive system working properly.

I described some specific problems I am having defecating, and he said I am experiencing Dystonia.

We told him how exhausted I get by early evening, and I asked for a prescription for some Physical Therapy, which he quickly gave, so that I could be monitored while I try to increase my exercise level. I may not have a doctor watching me all the time the way they do on the Biggest Loser, but at least I won’t be so scared that I am doing myself harm and will be more likely to push myself a little harder. I have an appointment next week for an evaluation and expect to go several times and then wait several weeks and check in. I’d like to do that all this year if my insurance will allow it.

I did forget to ask him about the dry skin situation I deal with year round, and there’s something else I meant to ask him about, but now I can’t even think of it! LOL!! It will pop into my head when it’s good and ready.

We went out to eat afterward, but it started sleeting just as we got to the restaurant, so we came straight home after we ate.

I’ve gotten behind posting requests for help on the Search Service, since we went to see our younger daughter and her family this weekend. I enjoy seeing them all, and really miss having both our daughters close to us, but trying to sleep anywhere but in a recliner is a real problem for me. It’s taken me the last few days to get my back and neck settled down again. I cut back on my exercises the last few days, since I was waking up with so much back spasm going on. But I did 2 sets of 10 of everything today and used the mini trampoline yesterday and today. Two steps forward and one step back seems to be the norm these days.

So today I have been trying to catch back up with the posts on the Search Service, but it will take awhile to get caught up. I don’t know about other retired people, but I seem to stay busy all day long. I’m not complaining, mind you, as I would be bored out of my skull with nothing to do.

I continue to add to my house cleaning routine, and some parts of the house are actually staying straight most of the time now. Well, notice I said “some”! Certain places seem to be the dumping ground for things I straighten up from other rooms, but don’t know what to do with yet. So some parts are getting consistently cleaner, and others are getting progressively worse. Rome wasn’t built in a day, right?? It took years to make this mess, and it’s going to take time to correct it all.

I’m feeling good about the progress I am making on several fronts, and looking forward to seeing the Physical Therapist next week. Now let me get back to posting!

One Thing about a Movement Disorder – It Never Stays the Same

Day by Day with a Movement Disorder Posted on by 4

We had an absolutely wonderful Thanksgiving together as a family, but of course I was pretty tired afterward. So, as I had planned, I waited until Monday to change back to the Primidone. Not only was I jerking more with the Neurontin, but I had noticed a marked increase in really bad nightmares. To compensate for the lack of sleep at night I have started taking 30 minute naps during the day if I get sleepy.

Adding the extra dose of MiraLax around 5PM in a glass of prune juice is helping keep the constipation at bay at least for now, but the gas is still all but overwhelming. I’m also getting 3 or 4 prunes a day with lunch every day we eat at home.

The nightmares have not stopped, as I had hoped they would when I went off the Neurontin, but at least the jerking has subsided again. I’m going to have to work harder to get my mouth used to the TAP again, so I can get a decent night’s sleep.

I got up about 12:30PM this morning, jerked wide awake by a particularly scary dream, but did manage to go back to sleep about 2AM I guess. Now here I am awake again at 4:30. So I’ll be running on fumes today. At least, since it’s our Date Day I can sleep in the car on the long stretches. I could really tell that less sleep was taking its toll on me yesterday, as I felt old and tired all day.

You know what it is like to sit in a car and tap on the glass to talk to someone outside??? Well, that’s the way I feel these days. I feel like my young self is trapped inside this old decrepit body, tapping away trying to make myself heard. Not a very good simile, but it will have to do for now. My brain still feels like I’m a young woman, but my body seems to get older and older by the moment. All day yesterday just getting up off the sofa seemed to be enough to exhaust me. So I know I need to get better quality sleep, and more of it, too.

We’re in our Christmas rush time for selling our Plush Animals and Dolls, so that keeps me moving, whether I feel like it or not. Hubby tries to leave all the getting of items out of inventory up to me, as it forces me to move around more than I probably would otherwise. I get all the packing materials together, print out the packing slip, and weigh the package. Then I print out the postage.

But then he takes over, double checking that I have the right toy going to the right person and checking to be sure everything is as it should be. He seals the packages up and puts the postage on. I was making too many mistakes, and this seemed like the best way to keep me active both physically and mentally, and still not get so frustrated with every mistake I was making. It makes me so mad when I can’t find a toy in the box it should be in. We have had to refund money several times because I couldn’t find a toy that my records showed we should have in stock. Keeping track of all the “paperwork” gets to be overwhelming at times, but I know it is keeping my brain active.

I was very pleased with myself about one thing I accomplished this week. I have noticed that it is very hard for me to learn how to do something completely new these days. So I was very happy with myself when I successfully followed the directions to make some java script to use on our Shopping Cart page. Yeah Yeah… I know that’s geek talk, but it is important to me, because I have never done any writing of java scripts before. I learned how to do something totally out of my realm of expertise. I’m patting myself on the back for that!

I continue to do my morning exercises, including my own version of Tai Chi for the balance impaired, although I didn’t do any this morning. Just getting in and out of the car and walking around at the sales today will give me plenty of exercise for today. I will do my neck exercises, though, as usual. They don’t take long and I sure don’t want that frozen painful neck situation to come back if I can help it.

So, this week I have felt terribly old and decrepit, but also beaming with pride at my successful creation of some java script code. I’ve changed back to the Primidone and the jerks have settled back down, and at least for now I have the constipation under control.

All in all, I’d say it’s been a good week.

Constipation is Better – Jerking is Worse

Day by Day with a Movement Disorder Posted on by 4

It looks like the addition of the extra dose of Miralax in a small glass of prune juice is helping with the elimination problems. I’ve also changed from Primidone to Neurontin for the Myoclonus. It doesn’t work quite as well as the Primidone did, but it’s not supposed to have constipation as a severe side effect.

I’ve noticed a lot of inadvertent double letters as I type. My finger just jerks back down without my meaning for it to. I’ve mistakenly double clicked on a lot of things too. So I have a trade off of a little bit of jerking in exchange for a more comfortable elimination process. I’m happy with that trade off. But probably next week, after things are back to normal after Thanksgiving, I will try the Primidone again for a week and see how I do with that. It’s my body, so it will be up to me to decide which result I can live with .

Our daughter had planned on having the Thanksgiving meal at her home, but she and her hubby have been sick with some kind of stomach flu for the last few days. They are still planning on cooking everything, but she didn’t feel like cleaning her house for company. So, we will be having everyone here at our house tomorrow. I’ve worked off and on for the last week cleaning, and I worked more today than I have been able to do in a long time. I’m tired, but it’s a good tired.

It was the Friday after Thanksgiving last year that Daddy fell. We never knew if he had a small stroke or just fell, but he was never the same after that. He died this March at the ripe old age of 102. It’s a momentary sad thought, but he’s no longer trapped in an old man’s body and, after almost 40 years of gradually becoming more and more vision impaired, he’s now seeing some very glorious sites. That wonderful thought keeps this day from being a sad day for me.

We’re looking forward to seeing our whole family together. I have so much to be thankful for.

Go-Litely AGAIN!!!

Day by Day with a Movement Disorder Posted on by  

I talked to the Gastro’s nurse again on Thursday, but his answer was not what I wanted to hear at all. I have to do the Go-Litely again! He seems to think that the large amount of gas I’m experiencing means I am still blocked. We had our Date Day as usual yesterday, but I am ready to start this mess all over again this morning.

I’m dreading it. If this doesn’t help this time I’m calling my Neurologist to see if there is any other Myoclonus medicine he could try me on. If not, it looks like I will be buying stock in some prune juice company! I’m already eating prunes almost every day, plus the complete Bowel Retraining routine as laid out by my Gastro.

As for Date Day, we enjoyed each other’s company, as usual, but the sales were basically duds. All this talk of hard times led us to think that we would see some “good stuff” being sold, but that was not the case yesterday. Oh well, we still bought enough to pay for our meals and maybe even our gas for the day. And it continues to be a lot of fun that we both look forward to.

I’m approaching 1,000 items listed in our online catalog of plush animals and dolls, so that is keeping me busy for sure. My goal had been to reach that milestone by the end of the year, but I think I may well exceed it.

My short bursts of energy to get housework done are getting longer, with less fatigue, so I must be improving my overall strength conditioning somewhat. I hope to continue to increase my activity level and get back to a regular exercise schedule. I’ve been doing my neck exercises faithfully now for some time, and it has helped. Now it’s time to add the Tai Chi back in on a daily basis. So much of this just takes will power, something I seem to be low on these days.

Speaking of will power … I’m having trouble saying no to sweets and chocolate in particular. And my weight shows it. Also, I’m keeping a nagging feeling of hunger – and I know that means the stomach ulcer is acting up again. For some reason I have always had a sensation of hunger when my stomach is hurting, rather than one of pain. There is a dull pain sensation when I press on my stomach.

All this digestive mess has turned into a bigger problem for me than I could ever imagined. I always thought you just took a laxative and that was the end of that problem, but it’s just not that simple when the medicine I am on is working against me in that respect.

It’s time to stop writing, as I am getting back into pity party mode here, and I don’t like that. I try to stay on a positive viewpoint, but anticipating this stuff today has me pretty low.

Oh well, this too shall pass. Sorry, couldn’t resist.

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.

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.