Category Archives: Myoclonus

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.

DYSTONIA – One of the untold number of MOVEMENT DISORDERS

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I wanted to pass this comment along, so more people will be aware of Movement Disorders in general, and particularly here about Dystonia.

I am working with the Bachmann-Strauss Dystonia and Parkinson Foundation to ensure that more research is done to find the cure for Dystonia.

Christian Hoff, Tony Award Winner from Jersey Boys, teamed up with The Bachmann-Strauss Foundation to speak out about Dystonia and filmed this video.

Anything you can do to help would be much appreciated, whether it be a story or even just a link to the video. Thank you so much!

Best,
Catherine

Dystonia is not what I have been diagnosed with. The current diagnosis for my Movement Disorder is Essential Myoclonus. I am very fortunate that Primidone does a fairly good job of controlling my symptoms. But I can certainly relate to anyone whose body simply will not do what they want it to do.

I looked through quite a few other YouTube videos, and this one shows a lady living with Dystonia, but I liked the video because it is very positive.

Mouth Spasms Still a Problem Sometimes

Day by Day with a Movement Disorder Posted on by 6

I have had a couple of days since the great improvement that have not been as pleasant as most have been, and yesterday was one of them. It starts out innocently enough, with a little mouth spasms in the mornings. But as the day progresses the twitches get harder and harder.

I have tried relaxation techniques, getting busy and trying to ignore it, and chewing gum, but once the twitch starts I don’t seem to be able to get it stopped. By the end of the day my whole face aches from the constant muscle spasms. The same thing happened late July 4th Holiday and all day Saturday, which I attributed to just being tired from all the family celebration and noise. But yesterday has no explanation.

When I tried to go to sleep I became aware of small muscle tensions and aches here and there all over my body, and I had one of the worst foot cramp episodes I have had in some time. Not only the toes, but also the arch went into full spasm, and it took pushing with a lot of pressure to get it stopped. I had to get back up and stand on my tiptoes as best I could to get rid of it.

Luckily I am sleeping well now, so once I was asleep it went away. Our bodies are naturally paralyzed in our sleep, so it gives some relief from the spasms. My mouth is behaving itself this morning, thank goodness. I can only hope that it continues to stay calm.

I am beginning to use an exercise/relaxation tape every other day now. I do pretty well with the upright exercises, but I am just pitiful on the floor. It’s all I can do to get down there and back up, let alone do the stretches. But I try. Then when I do get back up it takes me a good bit of moving around to stop the cramps in the tendons at the upper thigh. My whole body is clamped down tighter than a drum, and it’s going to take some doing to get any flexibility back. One day at a time, being a little more active each day and increasing my range of motion slowly, is the only way I know how to do it.

Even though the mouth problem and the foot cramps are very painful and aggravating, I am still so much better than I was that there is no comparison. I continue to be so thankful for my vast improvement and remain optimistic.

GREAT NEWS!!! – My New Diagnosis Is ESSENTIAL MYOCLONUS!!

Day by Day with a Movement Disorder Posted on by 11

I finally got to talk to a nurse on Dr. Watt’s staff today, and I now have an official diagnosis that I can take to insurance companies. I do not have Parkinson’s, nor anything in the Parkinson’s Family. I have what is called Essential Myoclonus. It is not a progressive disease, which is the best news of all.

They do not know what causes it, but the Primidone is doing a remarkable job of controlling my movements. So I look forward to continued improvement and taking my life back! I asked if it would be OK to add an extra half tablet in the mornings, because the dose wears off in the afternoons, particularly if I am more physically active or stressed. She gave me the usual precautions about not using it if I became overly drowsy, be careful about driving, etc., but they are leaving the timing and use of the half tablet up to me. I am to start it in the mornings and then move closer to lunch if I want to try it there after a week or so.

I have been telling everyone about how wonderful I have been feeling since I went on the Primidone and how truly blessed by God I feel. I have strong emotional ties to lots of online Parkie friends, and I would only wish that they could have such good news from their doctors very soon. I guess I’m going to have to add another section for research about Myoclonus to my sidebar now, and come up with a better name for this blog. I have been very active in the Parkinson’s PatientLikeMe forum, but I imagine I will be spending more time in the Essential Myoclonus section of WeMove.com now.

I lived in their world for almost three years, so I have a perspective into what it is like to have Parkinson’s that most people can never have, unless they actually have the disease or are very close to someone with it. That is a valuable perspective that I do not want to squander. I’m not sure how God can use me in regards to this, but I’m sure in His good time it will become apparent.

I have tried to chronicle my journey from the very first days of the initial diagnosis of Parkinson’s, through all the struggles I had with my digestive system fighting against the PD meds, to modifying my lifestyle to keep me safe, to the onset of tremors that soon turned into horrible shaking. I’ve tried to present an accurate picture of what was happening to me emotionally, as well as physically.

I am proud of this blog and hope that it will continue to be helpful to those who read it. May God use me and this blog to good purpose.

Mouth Twitches, But That’s All

Day by Day with a Movement Disorder Posted on by 8

I got up earlier than usual this morning, as I normally do on Fridays, so I can map out a route for us to use to go on our Estate Sale, garage sale, thrift store hunt. Even though it was 4:30AM, my mouth was already having slight mouth twitches. The rest of me was still, though, so it’s not really that I am complaining – just documenting.

We did make some good purchases, and we always enjoy each other’s company, but it was awfully hot, and we ended up coming home a little earlier than usual. The mouth twitch continued to increase as the day went on, although it is nowhere near as bad as it is without the Primidone.

A very nice lady who was having a yard sale saw me using the cane to help myself get down her driveway, and asked me if I was recovering from leg surgery. After the slightest of pauses, which I am sure no one else would have noticed, the words came out of my mouth for the very first time. I told her I had a Movement Disorder. She went on to tell me how she had had two hip surgeries and had used a walker, and now used a cane. It was a very friendly, normal sounding conversation, but those words coming out of my mouth were momentous for me.

My hand and foot did not shake, my shoulder did not jerk, and I was reasonably stable, particularly when I used the cane. I am selective in when I use it, but I’m careful. After all, we have seen first hand what happens when an older person falls.

If I know a restaurant is going to be easy to maneuver, I leave it in the car. Hubby gives me a reassuring hand to go up and down curbs. But if we go to a sale, I always use it. You never know what the inside of a house will be like, and yards can be uneven or steep. We’ve stopped at some of the same gas stations and restaurants often enough to know which ones have handicap accessible bathrooms, and which ones don’t, so I usually know if I need to take the cane with me to help in the bathroom.

We do have the Handicap Placard, but I try not to use blue spaces unless I am having a bad day. I have used them a lot in the last six months, but not since I went on the Primidone. I look forward to many more days of using regular parking spaces!!

No Mouth Twitch So Far Today

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No mouth twitch so far today!!

I moved the Primidone dose last night to eight instead of seven, in an effort to maximize the amount I would have in my bloodstream during the day. It pretty much wore off by about 6:00 last night, so that’s not bad at all.

I plan to take it tonight at 9:00PM. I took the morning dose at 7:00AM and have not had any mouth twitching so far. My gait is slow but steady, my hand and foot are not shaking, and my shoulder is not jerking.

I have emailed two members of PatientsLikeMe who are also on Primidone to get their experience with it, but I have not had time this morning to do any other research about this medicine.

I’ve been busy with our Lost Toy Search Service and our own toy catalog, and I am trying hard to make myself get off the computer in the evenings. I’ve been watching TV and using the computer at the same time for so long it seems strange to just watch the show. I am finding the long strings of commercials particularly irritating, though, as that’s when I normally get something done on the computer. LOL!

I cannot express how wonderful the last few days have been, and I am so thankful to God for providing doctors and researchers with the skills and experience to find something that is helping me.

I filled out a new PDRS, which allows me to rank my current condition on a list of various Parkinson’s symptoms. Up until this newest score, I was ranging around 25. The highest score of 32 was in January of 2006, when I was finally diagnosed with Parkinson’s Disease, and when I could barely walk at all, even with a walker. My score now is SEVEN!!! I’m sure I ranked some of the answers on the optimistic side when I scored it, but I am feeling so great … who cares!!!

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.

On Days and Off Days

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I am definitely less depressed since gradually cutting the dose and frequency of the Clonazepam, but I still have on days and off days. Thursday I went until sometime after 5:00PM without any facial tics at all, and then spent the whole evening jerking like crazy. When I’m like that, my face contorts, my left shoulder jerks forward, and my foot dances a jig uncontrollably. I was on a half pill only at night then. Friday I jerked and twitched all day long, also on the half pill dose. I also had a huge startle reflex while we were out on our Date Day, something I haven’t done to that extent in some time. Now today, Saturday, my mouth is all quiet and well behaved so far. I did not take even the half pill of the Clonazepam last night.

I had called twice to UAB, trying to get them to go on and send in the prescription for an alternative to the Clonazepam, because our drugstore would be closed from Friday evening until Tuesday. They did not get it called in, nor did I get a callback from a member of Dr. Watt’s team. The receptionist did tell me on my second call that Dr. D was sick. He is the member of the team who apparently is the one I will be seeing the most. So, I have to assume that is why nothing was taken care of.

I have found that I can at least mask what my mouth is doing in public by chewing sugar free gum. I’ve always been a gum smacker, so I am trying to get out of that habit, and reach a point were I can slowly chew and control the horrible twisting, twitching, and jerks my mouth does so much.

The right foot continues to do its own little dance, which makes me feel unstable as I stand still or walk. Going up and down steps is harder when there is no way of knowing what my foot is going to do at the moment. So I am still using the cane everywhere except here in the house and at church. The few steps I have to deal with at church are entrances, and hubby is there with me going in and out, so I can skip the cane and feel a little more inconspicuous.

I should have taken the last dose of the Clonazepam last night, but I thought it would be wiser to see how I would be today, rather than being even more unpredictable than usual for church tomorrow morning. Since I’ve been OK today, it looks like the decreasing dosing was done slowly enough to not leave any withdrawal symptoms. But there is now way of knowing how I will be in the next minute, let alone tomorrow for church.

I continue to stay busy searching and posting on our Lost Toy blog, and have been able to help quite a few families, thanks to all the folks who read the requests for help and search for them, too. If you have never been to that blog, you ought to go read some of the stories and try to help them. It’s a very satisfying feeling to help them. And I continue to add to our online Plush Toy catalog, too, so I stay very busy.

Oh, and I mustn’t forget to mention that it looks like our Centipede grass is actually beginning to come up in the composted side yard. I worked for a little while this morning in between the shrubs and the driveway, digging that section up and trying to get as many of the weeds out of that section as I can. We can plant Centipede here until July, so I should have it ready long before then.

Take each moment as it comes, Rosemary – a lesson I am being taught daily.