Tag Archives: Triavil

More Tests – Still Waiting

Day by Day with a Movement Disorder Posted on by 4

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

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

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

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

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

A Tiny Half Pill

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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!

Getting Better Little by Little

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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.

Align = Feeling Better

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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.

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

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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

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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.

Decided to Go Slowly with Triavil

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I intentionally waited 24 hours after stopping the Bentyl before starting the Triavil, just as a precaution. As far as I could find the Bentyl has a short half life, so that should have been enough to get it out of my system.

The problem is …. I always try to do as much research as possible with any new medicine I take, and the more I read about the possible side effects of Triavil, otherwise known as Elavil, the less I liked it. By last night I was very upset about it and almost decided to call my Gastro today and tell him I didn’t want to take it.

But I did find that it was used off label for Irritable Bowel Syndrome, and also for Insomnia. He would be prescribing it to me for IBS. I did not like the fact that it is an antidepressant. In fact I got pretty depressed last night just thinking about going on it. I found one place that said that the dose is much lower when used for IBS than for depression, and that did make me feel better.

The PDR said it would possibly make me sleepy, dizzy, or groggy, along with a bunch of other possibles that I don’t even want to write down. So … after much research and a lot of miserable hours I decided to take the night dose right before bed and see how I felt today.

Well, it did make me groggy this morning – that odd medicated feeling that’s not quite woozy, but not quite right, either. That lasted until close to noon, so I will just stay on the night dose for several days and see how I do. Eventually I am supposed to take it 3 times a day. But I’m in no hurry. Tardive Dyskinesia is in the list of possible side effects, and that doesn’t sound good at all!!! So for now it will be no more than 10 mg for me.

As for my digestion? I’m still hurting, and I felt lousy today, but we did go out on our Date Day. We came home early, but I would rather have done that than not go out at all.

Only time will tell how this plays out.

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.

Drug Interaction Still Causing Problems

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I went to the Gastroenterologist Wednesday afternoon, and he did X-rays of my abdomen to determine if I was as constipated as he thought I would be, based on my symptoms. He was surprised to find that nothing in my colon was hard or compacted. After examining me, he has come to the conclusion that my problem is caused by spasms of the digestive tract, rather than weak muscles, as he had been telling me it was. So, now he thinks my trouble is exactly the opposite of what he had thought previously!! He prescribed Triavil, which relaxes the colon muscles, and he said I should feel much better by Monday.

I’ve learned my lesson though, so I specifically asked him if he was sure I could take this med with my Parkinson’s meds. He said he did not think this would be a problem, but to ask my pharmacist. Full of hope that he had found a way to stop my very uncomfortable situation, I called our drugstore on the way home to be sure he had it in stock. But, when hubby came back from the drugstore, he didn’t bring in the prescription bag. He said the pharmacist said his computer all but crashed when he put in the medicine, it produced such a strong warning that this was a dangerous combination with my other PD meds!!

At first I handled the news stoically, but later on that evening I went through a rough time of being very depressed, with lots of crying. I called my doctor’s nurse first thing Thursday morning to let her know I couldn’t take it, and to remind her that he would see Selegiline listed in the interaction information, rather than Zelepar, which is just a dissolving form of Selegiline. I think that must be why he didn’t realize I couldn’t take it.

Anyhow, I haven’t heard back from him yet, so DH and I decided it was time to take matters in our own hands. We went enzyme, herb, and spice shopping, as I have been doing some research on my own about Irritable Bowel Syndrome (IBS), and I found some things that should help, without causing problems.

Yesterday, I started taking Turmeric, St. John’s Wort, and Acidophilus capsules. DH’s Oncologist has had him on Turmeric ever since he had colon cancer, and his doctor had already suggested I use it. We had our usual Date Day today, and I continued to belch a lot all day, but did not have any nausea at all, or my usual sensation as if my food was sitting at the top of my throat all day. I’m encouraged that I will find a way to calm my system down and get things back to closer to normal, whether my Gastro can find a medicine I can take or not.

I’m still very wobbly, though, so I used the cane just about everywhere we went today, and I’m using it in the house tonight, too. It may be that it’s just going to take awhile to recover from the really bad state I was in Sunday, plus I may still have some of the Cortisol in my system. I’ll have to see if I can find something about how long it stays in the system after getting an injection. Or, it may be that the St. John’s Wort, added to my other PD meds, is giving me an overdose of Levadopa.

That’s what makes figuring this all out so difficult, as too much PD meds makes for jerky movements, called Dyskinesia. If you’ve seen Michael J. Fox jerking around, you’ve seen it. When PWP have been on meds for a long time their systems process the Levadopa in a very unpredictable way, and you see these wild jerking movements. But early on, if the meds aren’t strong enough, you see tremors. It’s hard for me to tell if my wobbliness is tremor or jerking, so I can’t tell, based on that, if I’m getting too little or too much Levadopa. My hands are only shaking ever so slightly, which makes me think I’m not getting too much. My Neuro will know when he sees me.

By then I should have heard from my Gastro doctor, and I’ll know if the herbs are going to do any good or cause any problems. I will be doing more research, too, to be sure there are no contraindications of these OTC with my prescriptions.