Tag Archives: elimination difficulties

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.

My First Day on Neurontin (Gabapentin)

Day by Day with a Movement Disorder Posted on by 4

I got through my first day on Gabapentin fairly well. I did not have any jerks or tics, although my walk was again like being on a ship. The room did not spin, but my balance was way off. I felt drugged much of the day. We’ll see how I do today, because the Primidone should be completely out of my system by now.

I continue to clean the house and took on one of those “stacks” that seem so easy to pile things on in the beginning and so hard to get rid of when they have grown. This was the place where we pile Sunday School books, bulletins, etc. and it had grown to be a monster. I found quarterlies as far back as 2004!!! A stack of really neat Holman commentaries on the Sunday School lessons will be given to a friend who is a part time bi-vocational preacher. A stack of Christian magazines will end up in some of my doctor’s waiting rooms, and much of it will be added to our local recycling bin. With that stack gone the dining room looks better already.

My Tai Chi attempts are improving, though pitiful looking to anyone who might see me. And I continue to do the morning exercises for my legs and neck that the therapist put me on last year. My strength is returning little my little.

It’s so much easier to set goals and work toward them now that I am off the Clonazepam and feeling better. I’m very thankful to be feeling motivated again instead of so apathetic!

Speaking of goals, I passed the 1,000 item mark on our online Catalog. I had set that as a goal to reach by the end of this year, and I met it a whole month in advance. I hope to have another thousand listed by the end of next year. The Search Service and our sales keep me plenty busy at the computer, which still serves as a way to break up my physical activity.

All in all I can say I am doing very well, and I thank God for his many blessings.

Here I DON’T Go Again!

Day by Day with a Movement Disorder Posted on by 3

Well, the second round of Go-Lytely worked for all of two days before the constipation problem became evident again. So, I called both my Neuro and my Gastro today. My Neuro wants me to try replacing the Primidone with Gabapentin, which is the generic form of Neurontin. This is another one of the anti-seizure meds that is prescribed for all kinds of off label uses, including Peripheral Neuropathy, Tremors, and Myoclonus.

I’ve used this Drug Interaction Checker to see if I could take the Neurontin while the Primidone was still in my system, and that’s OK. So I should be alright changing over to the Gabapentin tonight. The half life of Primidone is 14 hours, so half the dose will be out of my system by 9:00PM tonight. I’ll take the Gabapentin before bed, and almost all the Primidone will be out of my system by tomorrow morning.

As I would have suspected, the list of possible side effects is long, and one of them is constipation. But, diarrhea is also in the list. I can only hope that it will control my Myoclonus as well as the Primidone has, and head me in the direction of diarrhea, rather than constipation! Only time will tell.

I feel like I’ve come full circle taking this medicine, as our older daughter (who suffered from Peripheral Neuropathy as a result of Gastric Bypass Surgery) was put on Neurontin about the same time I was finally getting my Neurologist’s diagnosis of Peripheral Neuropathy and Parkinson’s Disease.

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.

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.

I’m on the Full Triavil Dose Now

Day by Day with a Movement Disorder Posted on by 2

I’ve worked up to the full 3 times a day dose of Triavil, and my digestive system is definitely getting better. I am no longer eating something with every pill dose, but still with some that I think it would be wise. I also rearranged my pill taking times to make the schedule fit the Triavil better. I am supposed to take the last one late, but with food. That’s a big No No with GERD, so I have compromised by slowly moving my supper time to later in the evening. I still have to be through with all food and drink at least 2 hours before going to sleep, but it’s better than it was, anyway.

We have tried for some time now to use honey in my 8-10 cups of my anti-oxidant tea each day, trying to get away from the Splenda I was using. But, between the honey and eating something with each med dose, I’ve gained some weight again. So, after trying Xylitol and not finding it sweet at all, I am now using Stevia. So far I have not seen any bad effects from it, and cutting out the food with pills plus changing to zero calorie tea should help with the weight.

I’m still not getting as much exercise as I need to, although I continue to increase my activity level gradually, particularly with housework. And when I feel good enough I really enjoy having a clean house, so that is not the problem. I just wear out so quickly. I am a big fan of FlyLady, with her 15 minute chores!!!

I’m trying really hard to get ready for a yard sale to get some of the clutter out of here, plus we’re selling more toys than ever. That’s time consuming, but very emotionally rewarding, knowing that we are helping people find a lovie they are in some cases desperate to locate. The Lost Toys Search Service is our Ministry, as far as we’re concerned. But it’s the free side of our business, and the business pays for the time, gas, and items we sell. Each one helps the other, if that makes sense.

Every page of our listings and every email is sent with a scripture at the bottom that we picked as being appropriate for the audience we serve. And I add that signature with a tiny prayer that it is the right one for that person that day. God promises that his Word will not return void, and I claim that promise every day.

OK, that housework is beckoning, so while I still have some energy I need to go get something clean!!!

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!!!

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.

Now on Antibiotics for Stomach Inflamation

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We received the answering machine message Friday that the Endoscopy biopsies were all good, but did not get a chance to talk to the nurse about what my Gastro had found. So I called first thing this morning, and he is putting me on the pre-packaged set of antibiotics and acid reducer pills normally used with ulcers.

She did say my stomach lining is very inflamed, but she never actually used the word “ulcer”, so I’m assuming it falls more under the term Gastritis. I will have to do the research again on Primidone, because my Neuro said he had never heard of that as a possible side effect.

I do know that Primidone headed me in the direction of constipation as soon as I started taking it, so I was blaming the tummy problems on it. But as bad a reaction as I had to the Clonazepam, it could be that it was that medicine that inflamed the tummy, and I just felt too miserable to realize my tummy was getting worse.

Regardless of where the blame should be, I now have a treatment plan to deal with it. I also remembered to ask her if it was OK for me to continue to drink the decaf versions of all the High Anti-Oxidant teas that I get each day. Hubby is poking a cup at me all day long! LOL!!! But it’s part of our Super Nutrition routine that I am glad to continue. Some days I get as many as a dozen cups of various herbal teas. As you might imagine, I get a lot of exercise just going back and forth to and from the bathroom!

Tummy is Still Not Right

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I am supposed to call my Gastro’s office today to let him know how I’m doing, and I won’t have good news for him. I cleaned myself out, at his directions, and then went back to normal eating as much as I could, which is what he told me to do.

I’m still nauseated, bloated, and sore. Plus, I am still clearing my throat all the time and coughing from a tickle feeling when I eat anything the least bit spicy. And I do mean the least bit, as neither one of us likes hot foods. It always feels like the same place in my throat is being irritated.

So I suspect he will be considering an Endoscopy this time. I thought this time was different, but the usual problems did have to be ruled out.

We will be going on our usual Date Day today. I figure I won’t feel any worse than I already do, and I do need to get out of the house. Plus, it’s always a good bit of exercise for me, and I certainly need that. It’s a whole lot more fun going up and down hilly driveways in anticipation of finding some goodies than it would be to just do an exercise routine.