Category Archives: Medicines and Supplements

Off the Depakote, On to Lamotrigine

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My Neuro didn’t fuss at me when I told him I had cut the Depakote dose in half, because I was depressed. Smart man, if he didn’t want a blubbering patient on his hands.

He’s changing me to Lamictal, well actually the generic Lamotrigine. Anyway, this new med can have very serious side effects if not titrated up in the system in small dosage increments, so it will be awhile before I can tell if it’s going to work or not. As I did my research on it, I did notice that it has a half-life of 13 hours. That means when I’m on a morning and night dose there will still be half the medicine in my system when it’s time to take the next pill. I shouldn’t see any ups and downs with it, at least.

I’m trying to look on the bright side of it, in case you hadn’t noticed, as there are some VERY scary side effects possible, although very rarely seen, or course. Isn’t that true of just about every med these days?? I did check with my pharmacist, and he said it would be OK to start taking the Lamotrigine tonight at that small a dose, even though I had the Depakote yesterday morning. There are definite warnings that they should not be taken together, and cautions about taking it with Primidone, which I AM still on. Dr. S. also said I was at the maximum dosage of Primidone he could give me without getting side effects from it.

I finally remembered to ask him to explain to me if my Essential Myoclonus is a progressive disorder or not. At the time my diagnosis was changed from Parkinson’s to EM, we were under the impression that it was not progressive, that it would not get worse, and that was a big relief to all of us.

But I’ve lost close to a third of my body weight at the same time that my Primidone dose has doubled, plus it’s not enough anymore to stop the major jerks. He said that based on that he thinks I do have a progressive version of EM that will get worse with age.

I guess I’d better make hay while I still can, eh? It’s easy to imagine that at some point in the future I will have considerable problems walking again and will have to settle for being zonked to be still enough to have any Quality of Life. I can only pray that that day is a long, long way off and that I will handle the thought of it better when I’m not so depressed.

So, again I have a bummer of a post, but at least I can end with the hope that the Lamotrigine will be a successful drug for me. Primidone gave me my life back for a long, long time. I can only hope and pray that Lamotrigine does the same.

Having Problems with Depakote Blues

Day by Day with a Movement Disorder Posted on by 2

My jerking and twitching have definitely improved since I started taking the Depakote in addition to my Primidone, but as the jerking lessened my blues increased. I seem to be on the verge of tears constantly, and I’m more irritable, too. So, I took myself off one of the Depakote doses – the one at night. I’m not sure if that is going to work, as it took some time to start seeing the good results jerk-wise from the Depakote.

I have a Neurologist appointment later this month, so we’ll see if he agrees with my choice to cut the dose or fusses at me for doing it on my own. Right now I’m miserable enough that I don’t care what he thinks. I’ve just got to do something to feel better, even if it means going back to the jerks.

I know it’s the New Year, and I should be all positive about 2011, but right now I’m just not in a positive mood. Sorry for dumping my mood on you. I pray it won’t last much longer.

Praying the Depakote Works

Day by Day with a Movement Disorder Posted on by 2

I heard from my Neurologist Wednesday, and he’s trying me on Depakote, instead of the Neurontin. So far I’m not groggy, but I’m still jerking. Hopefully not as bad as I was, though. Today should be the test of it, as it’s had time to get fully into my system now. So, we’ll just wait and see. It does have some possible side effects that aren’t good, such as weight gain, so I’ll have to start weighing regularly again. And watch what I eat, too, as I had been splurging a good bit lately. But I’m not counting Thanksgiving.

It’s strange how they attempt to medicate the symptoms of Essential Myoclonus. Both of my meds, Primidone and Depakote, as well as the Neurontin he took me off of, are anti-seizure meds. But the EEG showed that I’m not having seizures. They really don’t know how these meds work for some people, and for that matter they don’t know what causes EM, either.

We had an enjoyable Date Day yesterday, going to the Galleria and walking around, mostly to see the Christmas decorations. But it’s not like it used to be. There were only token, if any, decorations in the stores, and they didn’t have a Santa in the mall, either. It’s sad to see how “politically correct” everyone’s become, but they sure want our money! But the mall itself was pretty, and the walking was good for me. And we did get some shopping done, but not at the Galleria! Hurray for “dollar stores” (I can remember when they were 10 cent stores)!!

I’ll try to get some more housework done today, and I’m praying that the Depakote works. My walking is still very unsteady, but that may be from lack of enough exercise. Might as well get a clean house while I build a few muscles, eh?

I hope you all had a wonderful Thanksgiving, as we sure did. And I’m thankful that my Neurologist does have some choices for meds to try for me. I pray that he finds the one that stops the jerking.

Thanks be to God for all his unspeakable gifts! He has blessed us in so many ways, particularly that my wonderful hubby is here by my side to help me in any way I need. I don’t know what I would do without him. I love him so much!!

I pray that you keep Christ as the center of your Christmas giving and celebrating, and that you and your family enjoy His Blessings during this holy time of year.

WAAAAAY Too Much Meds!!!

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Well, I found out one thing the last few days. I can’t handle 2 Neurontin pills 3 times a day, on top of 3 Primidone pills twice a day. I stayed in a stupor from Monday through Wednesday, trying to give my body a chance to adjust to the new meds level, but I just couldn’t take it. So, in order to enjoy Thanksgiving with my family, I took 1 Neurontin Thursday morning, and none at lunch. Then I took 1 with a light supper. I’m only taking one with each meal now, and we’ll see what the doctor says on Monday. If it weren’t for the “walking on Jello” feeling I have when my foot jerks unpredictably while I walk, I would put up with the shoulder jerks, rather than take the extra medicine. But I’m unsteady on my feet without the meds, plus seeing the slowing called Bradykinesia, and unsteady from being looped when I’m on them, plus the slowing. Go figure.

But we had a very good Thanksgiving together as a family, and I enjoyed being with everyone – especially our daughters. Of course, I enjoyed seeing our grandkids, but they spend most of their time texting and playing games, so we don’t see much of them. Our younger daughter cooked a beautiful turkey, and our older daughter did a lot of the other cooking. She made the girls shuck and scrape the corn. That was fun, because they had never done that before. It brought back memories, because it’s been many years since I shucked corn, either. I even got a great big hug from my “cool” grandson, which was extra special!

I must admit that all the hustle and bustle of preparing the food on Wednesday wore me out, even though I did very little to help. Mostly I just sat in a daze. LOL!

So I have a lot to be Thankful to God for this year. Our family has been through some rough times, but things are being dealt with as best we can, and with God’s grace, time will heal the worst of the wounds. We are so much more fortunate than many that there’s no way I can count all our blessings. Thanks be to God for His unspeakable Gifts!!!

I’m Jerking Less, But Walking on Jello

Day by Day with a Movement Disorder Posted on by 2

I have not jerked as much yesterday and today, but I can certainly tell I’m on a new med. I’ve been sleeping much more and much more deeply. That’s not necessarily a bad thing, and will probably become less pronounced as my body adjusts to the Neurontin. My legs, however, have been much less dependable. It’s hard to say if I’m shaking more, losing my balance, or if my legs are just weaker, but whatever is going on … I’m definitely having some difficulty walking. I have that walking on Jello feeling again, and I haven’t felt like that in a long time.

But I’ve only been on the Neurontin for 4 days now, so let’s hope these are side effects that will subside. I should find out the MRI and blood test results Monday hopefully. I don’t expect them to show anything, but it will still be good to have the results. Patient? Me? Not hardly!

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!

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.

Still on Acai, but Cheaper!!!

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I’ve returned the unused portion of the mail order Acai. Now it remains to be seen if they do as they said and have really closed my account. They were very pleasant and easy to deal with on the phone, so only time will tell if the horror stories I read about on the internet were just that – stories.

I decided to stay on the Acai if I could find it locally for a reasonable price. Walmart had it, although they are out right now. We’ve tried two different stores, but no luck. GNC has a capsule that is a mixture of Acai and Green Tea. Since I drink so many herbal teas each day, I’d rather stick to a pure Acai capsule or gelcap if I can.

My exercise routine is coming along pretty well, except I’ve had to stop using the bicycle. I thought I was being careful to limit my use, but even at 5 minutes in two separated sessions my coccyx is still complaining. I’m sitting on the Roho cushion now, trying to get my tail bone calmed down again. But I can use the trampoline for up to 15 minutes at a time now, and I’ve added lunges and a complete set of arm exercises to my morning routine. I even did my squats with a 3 1/2 pound set this morning.

You’d think as long as I have been exercising now (in my fourth month straight) that my walking would be easier. I can tell the difference a little climbing stairs, but my walking still seems so stiff and unnatural.

Nothing I am doing stops the brain fog, though. It’s usually less noticeable in the mornings, but evenings find me struggling to follow any conversation. I’ve reached the point where I can enjoy reruns on TV, because I can’t remember having seen them before. LOL! At least I’m easy to entertain!!!

I continue to be upbeat and pleased that I have been able to keep the exercise routine going so long. My digestive system has settled down again, so I am not having any elimination difficulties right now. Hopefully I will soon reach a level that helps me to lose some weight.

We are still getting quite a few sales from our Plush Animals Catalog, although certainly not at the rate it was before Christmas, and I continue to add more items to the catalog just about every week.

So, it’s been a good week, and I look forward to an even better week this week.

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!

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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.