Tag Archives: side effects

Steroids – I Hate Them!!!

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I had tried so hard NOT to have to get a cortisone shot in my neck, because I had trouble the last time I had steroids. But when I had an allergic reaction to the Voltaren Gel, I really didn’t have a choice but to allow the ER doc to give me a steroid shot and put me on a Medrol Pak.

Normally, steroids make me very shaky, hungry, and I can’t sleep. This time I was on Benadryl and Flexeril, too. I don’t know if that made the difference, but I had a completely different reaction this time. I’ve gotten so weak even my voice sounds weak. I’ve not been hungry at all, and I’m not having any trouble sleeping.

I called my doctor yesterday, because of all the weakness. His nurse said to keep an eye on my blood glucose levels and my blood pressure, as steroids can elevate both. So, I checked my blood several times yesterday – and it was lower than usual!

I have one more day of steroids to take, but I quit the Benadryl and Flexeril yesterday, as I am no longer swollen and my neck is gradually improving. The nurse said I may continue to feel weak for up to 4 days after I stop the steroids tomorrow. Oh, goody!

Hopefully the next post will be more upbeat than the last few have been.

Disk & Muscle Spasms Rear Their Ugly Head

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For the first time in quite a few years, I’ve been having real problems with my neck and back for the last couple of weeks. It seems to get worse as the day progresses, so by the afternoon and particularly at night I’m really not comfortable at all.

I’ve tried Tylenol and Aleve, but I can’t even tell I’m taking them. I’ve also been having constipation problems again, so I’ve been reluctant to ask one of my doctors for a powerful pain med, knowing strong pain meds would just make the constipation worse.

I’ve been thinking the pain spasms would clear up on their own if I gave it some time. I’ve tried to keep moving my neck and shoulders as much as I can, used the hot pad, and have been using the inflatable neck brace for a short time each morning. It’s way too uncomfortable to use it for very long, but it’s extremely adjustable, and I have all the Velcro sections pretty well suited to my short neck. After I put it on I pump up the bladder in it and it gives a little traction. That helps for awhile, but it’s way too painful to use it after the spasms take over later on in the day.

The human adult head weighs about 10 pounds, and the neck and shoulder muscles have to be strong enough to carry that weight around in all kinds of positions all day long. Just imagine how long your arm would last without fatigue and pain if you were to lift a 10 pound bag of potatoes for 12 straight hours! Normally, our bodies are so wonderfully made that we don’t give it a second thought.

But I have Degenerative Disk Disease and Osteopenia, which means my disks and bones are not as healthy as they should be. I’ve had bulging disks in my neck and lower back for many, many years. So I guess I was overdue for a round of pain with one or the other. This time it’s the Cervical disk that seems to be the focus.

I’m not sure, but the Myoclonus may be making the spasms worse. I was in quite a quandary as to which doctor I should go see, my Neurologist or my Orthopedist. The trigger points seem to be on the right side, not near my left shoulder that does all the jerking, so I’ve decided the Orthopedist makes more sense.

So, it looks like I will be making an appointment with my Orthopedist next week.

Removing the Mystery: Top 49 Blogs about Parkinson’s

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We were notified today that our blog has been included in what appears to be a very good list of blogs and news sites about Parkinson’s and Movement Disorders, from not only the patient’s perspective, but also from caregivers and physicians.

A lot of these blogs and resources are already listed on my sidebar here, and I will be adding some more, I’m sure, as I have time to check them all out.

It feels good to be validated for what I’ve tried to accomplish here over the years – from when I was first diagnosed with Parkinson’s Disease, to the change in diagnosis to Essential Myoclonus, and then the addition of Type II Diabetes and being a care giver to the mix. During that time I’ve tried to write honestly about my emotional state and the problems I’ve had with side effects from the medications and my symptoms.

I want to say a sincere thank you to those of you who have encouraged me along the way with your comments and prayers.

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.

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!!!

My Brain is Empty!! Well…

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OK, that’s what my hubby has to say about it. We had good news today. My blood work was all OK and my MRI was clear, so that seems to leave side effects of my meds as the reason for my terrible memory. As for the jerking, I had one good day, and then it was back like it had been. So my Neuro told me today to double the dose of Neurontin he recently put me on, in addition to the doubled doses of Primidone I was already on. I’m hoping that lets me enjoy our family time for Thanksgiving without jerking or being a zombie. Neither one sounds very pleasant.

So, we have plenty to be thankful for with this good medical report. May God’s blessings be showered on you as well!

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!

Didn’t Know that Dry Mouth is Something to be Concerned about

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I had my normal cleaning appointment yesterday and was careful to give my Dentist the new diagnosis and meds I was on. I told him that I had read that it was particularly important that I tell him I was on Triavil. I had assumed incorrectly that the caution had to do with using gas for dental work. But my dentist says that is not the reason for needing to know about it. He said that any meds or conditions that caused a dry mouth left the teeth much more open to rapid decay. It seems that saliva does a lot toward keeping the mouth bacteria population under control.

He suggested a Fluoride mouth wash, but NOT one that had alcohol in it. And he said that may be too strong for some people, and that it could cause gum irritation. There were alternatives that he could offer, but not over the counter products. So I will try this first and see how I do.

I told him that I had stopped using the TAP device, since the change in diagnosis, and because I was leary of using it while my GERD was acting up so much. I could not chance gagging and choking on the reflux acid that would back up into my mouth.

It did seem to stop the mouth breathing for a long time, but I have not been sleeping as well just lately, so I was thinking about trying it again. He said I needed to use it at least once a month regardless, because teeth tend to move ever so slightly over time. If I didn’t wear it often enough it would reach the point that it did not fit any longer. And I certainly don’t want to spend that money again sometime in the future, when I could have prevented it.

So I’ve been up most of the night tonight, just the way I used to do. This has been gradually coming on for the last few weeks, but tonight was the worst it’s been in a very long time. I’m actually wearing the TAP right now. We decided it made more sense to wear it for awhile while I am awake, until my mouth gets used to it again. Right now if feels like I have some huge thing in my mouth, but I’m sure it will become much more comfortable, just the way it did last time, if I work at it.

I have been noticing an increase in the way my brain and emotions cannot handle any kind of time pressure, no matter how slight. And every time I try to fool with those stupid Digital Converter boxes and try to tape a program it really shows up big time. I was so frazzled last night trying to get it set up to tape a program that I don’t think I could have told you my name!! It’s a horrible feeling, and one that I prefer to attribute to the med side effects, rather than a true sign of dementia onset. It’s hard to get that thought completely out of my mind, though, after caring for my mother so long before she died with Alzheimer’s. As I have mentioned in some other posts, my family’s neurological history is not pretty.

I’m continuing to try to up my activity level a little bit each day, but I still can only work in short spurts. After that I need to do something sitting for awhile, which for me usually means working on the computer.

And I’ve gone back to doing the neck exercises each morning (I wasn’t supposed to stop), since I’ve been getting the tingling nerve signal again that means the degenerated cervical disk is pressing on a nerve. I don’t want to end up in the stiff and painful situation I was in earlier this year, so for now at least I’m being a good girl and following doctor’s orders. It’s just hard to make myself faithfully do them when I’m feeling good. Yes, that’s childish and foolish. Guilty on both counts. But I’ll try to be better about continuing them this time, even when it stops bothering me.

It takes at least 21 times to build or break a habit, but it’s worth the 21 days to have a better Quality of Life!! So, old habits have been revived, and hopefully continued. This will give me something positive to work on each day.

I intend to ENJOY this Holiday Season, and not just survive it, the way I have the last few years.

Beginning to See Slight Improvement as I Go SLOWLY with Triavil

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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!!!

Added a Half Pill of Triavil this morning

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I added a half pill of the Triavil this morning, so now I am on a whopping 15mg a day!! I can tell I have it in me. You should see the wonkyjawed labels I stuck on packages this morning to be mailed out. Not very professional looking, but nothing I can do about it. It’s odd … I thought I was putting them on straight, but as soon as it was stuck down I could see just how crooked it was. So, I tried to be more careful with the next one … and did the same thing again … THREE TIMES!!! Don’t let anyone tell you that meds don’t mess with your body in unexpected ways. LOL!!!

Anyhow, I’ll stay at this dose level until I can tell my body has adjusted to it and then try another half pill later on in the day. I am supposed to take it 3 times a day, but I’m not real sure if that’s with meals or spread out over the whole day. Since this is to help digestion I will have to call the Gastro’s nurse to find out. But I won’t bother her today. I’m sure Monday mornings are hectic, and this can wait. I’m in no hurry to work up to the full dose. I’d rather put up with a few more days of tummy pain and discomfort than be totally out of it for days, while my body adjusts to it.

I was asked to pray for our sick in Sunday School yesterday, and I lost it. I couldn’t continue, and the teacher had to step in and voice the prayer. There was a time when I could say a public prayer like that almost at an automatic level. It’s not that I didn’t mean it to be voiced to God, but it was also meant for human ears and that was an important concern in choice of words. Now my faith and connection to HIM have deepened so much through all that’s been going on the last few years that I can no longer talk to God with half my mind on the people who might be in the room with me. It’s extremely personal now, and it’s bringing tears to even write about it.

My level of gratefulness to Him for my muscle improvement is so over the top that I cannot pray any other way now. And I suppose part of it is the Emotional Lability that seems to go part and parcel with having a Movement Disorder. But the end result is that I feel close to God in a way that I never have before, and that’s a very good outcome of being sick.