Tag Archives: Primidone

Now on Antibiotics for Stomach Inflamation

Day by Day with a Movement Disorder Posted on by  

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!

Looks Like PRIMIDONE is THE Medicine for ME

Day by Day with a Movement Disorder Posted on by 2

Some medicines have what is called a Honeymoon Period, where they work really well for a short period of time, and then stop helping. I have had some like that in the past, probably including the Sinemet that was originally given as a Challenge – a way of semi diagnosing Parkinson’s. I did get much better way back then, but had such nausea issues with it that my Neuro did not keep me on it. I had good effect from the Requip that he changed me to, but then had to add Zelepar to that. So maybe none of them were anything for me but Honeymoon Drugs.

So, even though I have been so elated with the wonderful response I had to the Primidone, there was always a tiny little corner of my brain that wouldn’t give up the Honeymoon idea completely. I have been on it now for over a month, with only a half pill added to the original dosage, so I think I can consider this one to be a KEEPER.

Not that I am 100% back to “normal”. But then, since I am 65 now I’m not sure I know what normal is any more, anyway. LOL!! What I do know is that I enjoy talking to people again, I laugh a lot, I don’t jerk nearly as badly even on my bad days, and I feel truly blessed by God with this wonderful miracle. Hey, that’s a “normal” I can LIVE with!!

We don’t have cable or satellite, so, as the resident geek, it’s been up to me to try to figure out how to set up the HD Converter boxes we bought using the Government Coupons. We want to be able to continue to tape one show on our VCR while we watch something else, and that requires some very complicated hookups. There is so much about the words and terms they use in explaining all this that I am totally unfamiliar with. So, our boxes arrived in the mail a few days ago, and I have spent almost every waking minute trying one hookup, testing it, undoing it, trying another, repeating some over and over as I gradually understood the meanings of the directions and went back to correct mistakes I had made.

PHEW!! I was finally satisfied Friday evening that I knew how to do it, but I needed one piece of equipment that we did not already have. So, armed with my diagrams and the catalog numbers from the internet, we went to RadioShack yesterday. The young man took a look at the diagram and let out an involuntary “UGH!”. I agree totally.

Well, to make a long story short, he thought I would get better results with a different device than I had come in to buy, so I took his advice. I spent all yesterday evening, plus got up bright and early this morning, trying to make it all work with this new device, and finally decided he was wrong.

Hubby always goes out on his own on Saturdays, so he took it all back and exchanged it for the switch that I had originally decided would fix it all. I’m all ready for it when he gets home, and more than ready to quit spending all this time and energy on this stuff.

The stress it has put me under has been overwhelming, knowing that there is no one who knows enough about this stuff to be of any help. I’ve been angry and miserable, one after the other, over and over since Wednesday when I started on it. Hubby has left me ALONE!!! And I am glad that he has. He always thinks he can tease me out of a bad mood, but this time I think I would have bitten his head off if he had tried that with me. I never used to get angry like this. I was an only child and a “good little girl”. I never really learned how to argue or express anger until I was grown, as it was not “ladylike”.

Of course my mouth jerks and twitches came back when I was at my most upset points in all this, but they would be gone the next day. And even at that they weren’t as bad as they were before the Primidone. So I would say I have put it through a grueling test of its powers this week, and it passed the test quite well.

Now the boxes are set up, the TV and VCR work correctly with them as far as I can tell, and the Universal Remote is programmed for all the pieces. I am able to breathe again. But I did tell hubby to be sure he brought me some CHOCOLATE!!!

Half Pill More of Primidone is Working Just Fine

Day by Day with a Movement Disorder Posted on by 6

I hesitated to start taking more of the Primidone for the very first time on our Date Day, just in case it left me loopy, but I decided to take a chance. It was just this sort of extra exercise that made the Primidone wear off faster in the afternoon. I had no problem with it at all. Our very first Estate Sale involved a long walk up a steep driveway to get to the house, and yet I was still steady yesterday evening. So that appears to be the correct dose for me right now. As I gradually increase my activity level, I may have to adjust it again. but for now – it’s great!!

I’m still bubbling over such great news and wonderful relief from the jerks, shakes, and twitches. Hubby has been teasing me about how much I’m talking now. He drawls, “It sure was quiet around here,” and sounds just like my Daddy – always finding some way to say something negative. He is teasing, and we both laugh every time he says it. It’s a shame my Daddy never learned to look on the bright side of things, but I learned my lesson well from him and don’t want to ever be that way.

And now I really do have something positive to shout from the rooftops!!! God has blessed me with a wonderful new lease on life, and I can’t give Him praises enough!

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.

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!!!

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

Day by Day with a Movement Disorder Posted on by  

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!!!!!!!!!!