Tag Archives: Tardive Dyskinesia

Decided to Go Slowly with Triavil

Day by Day with a Movement Disorder Posted on by  

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.

Praise GOD from Whom All BLESSINGS Flow!!!

Day by Day with a Movement Disorder Posted on by  

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

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

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

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

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

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

Primidone is HELPING!!

Day by Day with a Movement Disorder Posted on by 2

I’ve been trying to get to this post for several days now, and other things just kept getting in the way. Also, it looks like I have good news, and I didn’t want to celebrate too soon. The Primidone seems to be helping!!

I finally got in touch with Dr. Watts’ UAB Neurology team, and he sent in a prescription for Primidone on Friday a week ago. I took my first dose Friday night, and was pretty well looped all day Saturday, and almost as drugged feeling all day Sunday. But I was NOT jerking, and my hand was still! My walking was very odd, like I was on a boat or a dock. When I stood still I kind of wobbled, instead of shaking, as if it were slowing the speed of the movements down and increasing the amplitude, if that makes any sense. That lasted for several days, but then by about Wednesday I was only noticing the good effects. As long as the dose was in me, I did not shake, wobble, or tremor at all. Ignoring the slow walking, I was back to NORMAL! Even my handwriting improved. I was not depressed, but trying not to celebrate too soon, because the next step was to add a morning dose, and I wasn’t sure what was going to happen then.

I started taking a second dose in the morning as well on Monday. I do get a little woozy feeling for just a little while about an hour or two after I take it, but other than that, it seems to be helping a lot. I have a slight mouth twitch today, the third day I have had two doses, which I did not have Monday or Tuesday. But that is the only symptom other than the slow walking that I have! I do have to be more careful with steps – it’s like I can’t tell where my feet are.

I am not depressed at all with the Primidone, the way I was with the Clonazepam, and I am very hopeful that this medicine will work for me. I am still doing research on this medicine, but its brand name is Mysoline, and its primary use is in controlling seizures. They assured me that there were no signs of seizures from my tests, so this is what they call an off label use of the drug.

This medicine has a very long half life, and that means there is still plenty of the drug in my system when it is time to take the next dose. Actually, when I was taking just the one pill, I took it at 7:00PM and it did not completely wear off until four or five o’clock the next afternoon. I am also on the lowest dose, so there is room to go if I get used to the medicine and need to up the dosage.

Did you see me doing the happy dance????

I am so thankful to God for his tender mercies!!!!!!!!!!

Dyskinesia Wears Me Out

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Saturday was a fairly good day, but Sunday was not good at all, with lots of dyskinesia. By the time Sunday School was over, I was twitching and jerking pretty badly. The more my mouth jerks when I am in public, the more stress and self consciousness I feel, which just feeds more jerking. The chewing gum helps up to a point, but it does not stop it, plus my jaw gets tired after awhile from the chewing.

My walking becomes much more unsteady when I am going through one of these episodes, too. Nothing I did helped much on Sunday, but then Monday wasn’t bad at all, by comparison. I managed to get past 5:00PM again with almost no spasms. Then it came on gradually.

Yesterday, it started as a small lip twitch and jiggly foot in the morning and progressed to such constant movement by the end of the day that I was actually tired from all the muscle movements. My face ached, my toes and fingers were cramping, and I was generally miserable. I tried going to sleep early, just to get away from it, but I wasn’t sleepy. So, I took a long, hot shower. That helped considerably, relaxing the worst of the muscle movements. But by the time I was dressed again and my hair was dry, I was beginning to twitch all over again forcibly. That was the last straw. I took 2 Benadryl, and conked myself out. That helps me in two ways, as it helps to dry up the patches of poison ivy I continue to have, and it puts me to sleep rather quickly.

I’m still a little woozy feeling from the Benadryl, but other than that, I am nice and calm this morning. It almost looks like an every other day pattern, but there really is no pattern. I can’t determine anything I am doing, or not doing, that causes the difference in the days. I’ve decided to try to graph the strength of the Dyskinesia, as it is called, for maybe a week, and see if I can spot anything I am doing that makes it better or worse.

I’m writing this with only tiny little signs of the jerking and twitching, so I hope for a good day today.

Weaning Off Clonazepam = Thinking More Positively

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I’m down to a half tablet at night now, starting today. I will stay on that for three days, and then I will be through with it. I sense the depression passing somewhat, but certainly not all of it. I was depressed before they put me on it, just not as much.

I’ve been trying to work off as much of my tension and fears in the yard the last few days. I’ve spread the rich composted “dirt” and planted Centipede seed there. I don’t know if any of it will grow, but the weeds are sure enjoying the rich dirt. I can’t very well pull the weeds, as the grass is still germinating. The idea is to let the growing grass choke out the weeds on its own. Since that section of the yard is pretty much finished, I’ve moved to a small section of grass at the front of the house. I’m wetting it down at night and then working on digging all the grass weeds out of it the next day. The hoeing is very therapeutic. It’s kind of like a punching bag for me.

My biggest problem right now is that I can’t get out in the yard without setting off a poison ivy outbreak, no matter how hard I try to stay away from it and bathe as soon as I come in. I’ve been super itchy now for some time, because I don’t want to take any antihistamines on top of the Clonazepam.

I’ve been trying to read about Tardive Dyskinesia, which certainly seems to fit what I look like these days. I can’t even spell it right half the time, but Google very nicely suggests how to spell it for me. If that’s it, then I can add TD to my list of acronyms.

My mouth is definitely jerking and twisting more as the Clonazepam dosage is reduced in my system, but they have told me that there are other prescriptions they will try to reduce the tics and jerks, once I’m off this med. And I’ve started chewing sugarless gum a lot, too, as that keeps my mouth busy. I chewed so long last night I made my jaw hurt, but at least I didn’t have my mouth pulling to the side and twisting all around. I will definitely be using this trick in public, as I am extremely self conscious about the way my face looks now.

Our wonderful pharmacist has printed out all the prescriptions I have been on since he opened his store some years ago. I haven’t yet tried to track down where my records would be stored from the previous drugstore, but he suggested I try the CVS in a nearby town. We went without a drugstore at all for quite awhile there, as the previous pharmacist gave up his store to work for CVS. I haven’t called yet, because it is likely a waste of time. But I will call. I’ll just have to be in the mood to do it.

I’ve tried researching every medicine that I can remember ever being on, and a few are possible causes. But there’s nothing to be done, other than try to deal with the symptoms. Tardive means it’s a delayed reaction, so there is no med to “stop taking” to make the movements go away. Our family has always joked that an aspirin will put me to sleep, so I suppose it’s not surprising that I would be one who had a delayed side effect to some medicine I’ve taken in the past.

I haven’t been going to the Parkinson’s forum. I just don’t know what to say there any more. I guess I would still qualify for membership, since I’m dealing with a Movement Disorder of some kind, but I just don’t feel like I fit right now.

Hubby has been a big help, and isn’t mad at me any more about my reaction to the doctor’s news. He’s such a sweetie, and I know all this has been really hard on his emotions, too. I don’t know what I would do without him.

I ran across a copy of Michael J. Fox’s book, Lucky Man, at a yard sale not long ago, and I finished reading it last night. There were several things in it that made me feel better about myself. He talked about all the things he did to make his early tremors stop – how he tricked his brain – so he could hide it from the television and movie audience. That process of being able to temporarily stop a tremor with little mind and body tricks is one reason I thought I was suffering from a psychosomatic illness. I did not realize that at least some people with PD can consciously stop tremors momentarily. I have feared from the very beginning that being able to stop them for a brief while meant mine were not “real.”

So, as it stands now, I don’t have Peripheral Neuropathy, and there’s no way of knowing if I ever did or not. I’m inclined to think I did, but all the super nutritious foods we have been eating for the last two years, plus the Turmeric and all the vitamins and minerals I take, just healed the nerve pathways.

Parkinson’s is likely not the problem, although I have not ruled it out completely, as the doctor’s always hedge what they say about that. I do have a Movement Disorder of some kind, and I am getting past the point of blaming it on myself. That’s a good thing!!

Reading Fox’s book helped me, so I hope that reading this blog can help someone, too.

Back to Square One Plus

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OK, first of all the plus side of the meeting we had with Dr. Watt’s team this week. My fancy MRI and EEG did not show anything particularly abnormal, and certainly nothing that I need to be worried about. The ultra strong MRI did show signs of several Transient Ischemic Attacks, or TIA, what many people call little strokes. The doctor said they were normal “for my age.” (I hate to think I’ve reached the age where something wrong is normal, but I guess I have, huh.)

My reaction again is not what anyone would have expected. I guess I should have been jumping up and down with joy that I did not have a brain tumor, but all I could do was cry. The whole time he’s telling me that they didn’t find anything that explained my symptoms, I was jerking and wreathing all over the place. I asked him point blank if this could be that I’m just crazy, but he assured me that there really is something physical going on, they just don’t know yet what it is. If I understood him correctly, he says in time my symptoms will become more obvious, so they can make the diagnosis.

The Clonazepam had already made me very depressed, so I have been way low since Thursday. They are weaning me off the Clonazepam, since it did not help, and it was making me feel so depressed. I think they plan on calling in a prescription and trying something else, once I have finished weaning off the Clonazepam.

Hubby was really angry with me Thursday night. We finally talked about it yesterday, although I still begin to cry when I do discuss it or even think about it. He was so mad, because he said I acted like I was disappointed that I DID NOT have a brain tumor or some horrible disease. I really can’t explain it, but to have my body jerking and wreathing and nobody being able to tell me why is extremely upsetting. I know I should just put my faith in God, that this will either improve with time, get worse and provide enough information to make a diagnosis, or stay just the way it is now. If this is the way I will be for the rest of my life, then I am going to have to deal with it somehow. But for now, all I want to do is cry.

The only diagnosis they will even name as a possibility is Tardive Dyskinesia, which just means they think this was caused by some medicine I have taken some time in the past. Trouble is, whatever it was is obviously not in my system now.

They have told me for sure that I do not have Peripheral Neuropathy. I asked him if that meant the original diagnosis was wrong, or if it had been cured. He said it was possible that it was cured, but seemed to be leaning more toward the idea that the original diagnosis was incorrect. I did not get the nerve up to ask him if Parkinson’s was ruled out. That seemed kind of pointless right now, since Parkinson’s is so hard to diagnose anyway.

So, I’m left feeling miserable, with no coping strategies working for me at all. I’m crying even as I write this. I cried in church today. I cried in the car yesterday. That’s basically all I’m doing – just crying. It’s a grief that I can’t name, but it’s there.