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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: Benadryl

Angioedema from Drug Interaction

Day by Day with a Movement Disorder Posted on April 8, 2011 by DBMay 17, 2016  

It’s been interesting around here! The Orthopedist gave me a prescription for Flexeril and Voltaren Gel for my cervical disk flareup. I immediately started on the Flexeril, which is a muscle relaxer I’ve taken many times before. But I had to wait a week before my insurance company would authorize the Voltaren Gel. Since I ended up in the ER several years ago after taking steroids, and my GERD makes pain meds a poor choice, this cream that would be applied to the back of my neck and across my shoulders seemed a reasonable choice for me.

Two days after starting the gel, I woke up yesterday with my lips and lower face swollen so much I looked like a duck!! I put in a call to my Orthopedist and obviously stopped taking the Flexeril and Voltaren Gel. I debated on taking some Benadryl while I waited for a call back, but decided adding more meds before I had professional advice might not be a good idea.

When I finally did hear from the doctor’s office, his PA told me to go to the ER, which we did.

I was told that I had Angioedema, and he agreed with me that it was probably the Voltaren Gel that had caused the swelling. Angioedema is swelling under the skin, rather than hives, which makes welts on the skin, and it is an allergic reaction. So, I ended up with a steroid shot after all. He also told me to go back on the Flexeril, take Benadryl, and he prescribed a Medpak – MORE steroids LOL!

I’m still swollen today, but my lips are not as tight as they were yesterday. And surprise, surprise – I slept, thanks to the Benadryl.

Posted in Medicines and Supplements | Tagged Angioedema, Benadryl, drug interaction, ER, steroids, swelling | Leave a reply

Feeling Better – Working Toward My Goal

Day by Day with a Movement Disorder Posted on January 25, 2009 by DBMay 24, 2016 2

I didn’t realize it had been so long since I posted here, so I’ll try to catch back up. We had a wonderful Christmas, New Year’s, and we got to celebrate our Grandson’s birthday, too. We still owe our Granddaughters their birthday time, but they have been so busy that there hasn’t been a time to go see them. Plus, I’ve been sick with allergies or a very stubborn sinus attack and really haven’t been up to thinking about a visit yet.

The bad thing about getting “everyday” kind of sick now is that I can’t take the medicines I once would have used to deal with it. I took Benadryl as an antihistamine and then changed to Sudafed when that didn’t help. So, I toughed it out as best as I could, but basically I was a big baby about it. Thank goodness my dear hubby puts up with me when I just don’t feel like doing a thing.

But I’m better now, although I still get up with laryngitis every morning. At least I’m not staying croupy sounding and all stuffed up all day long now. And the energy is returning. I kept on with my very simple exercise routine all the time I was sick, if I didn’t get anything else done all day. So now I am trying to increase my effort each day. I’m up to a rotation of one set of ten of shoulder range of motion movements, squats, and side stepping with a one pound weight, then Tai Chi, and then another set of ten with a two pound weight. After breakfast I ride the exercise bike for five minutes, use the mini trampoline for 10 to 15 minutes, and then end with another five minutes on the bike.

It sounds like such a little bit of effort on my part, but I’m determined to go slow and keep at it. Back when I was relatively healthy I would have laughed at such a simple routine, but now it is all I dare do. I just know that if I keep adding tiny increments of effort it will eventually end up being a decent exercise routine.

I envy the people on Biggest Loser, who have a doctor monitoring their every exercise to be sure they are helping and not hurting themselves. I could probably push myself a lot more if I just had the assurance that I’m not doing more harm than good. So, doing it on my own, I see no choice but to go very slowly toward my goal.

My goal is really very simple … to reach the point where I don’t run out of energy in the course of a normally active day, and to lose 50 pounds. I know I can’t expect to lose any weight with the small amount of exercising I’m doing right now, but it’s a start in that direction.

So I have been purposeful, even while I was sick, and now hopefully I can work even harder toward gaining more strength and energy.

Posted in Quality of Life | Tagged antihistamine, Benadryl, exercise, exhaustion, Quality of Life, weight loss | 2 Replies

Dyskinesia Wears Me Out

Day by Day with a Movement Disorder Posted on May 28, 2008 by DBMay 30, 2016  

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.

Posted in Myoclonus | Tagged Benadryl, fake tremors, muscle spasms, poison ivy, Tardive Dyskinesia | Leave a reply

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