Tag Archives: Angioedema

Trying to Get Comfortable

Day by Day with a Movement Disorder Posted on by 2

I’m still having a lot of trouble with my weak neck muscles. I’ve read that the human head weighs 10 pounds, and I believe it! So we bought a new soft neck wrap-around brace that’s fairly comfortable, because there is an adjustment under the chin to make it smaller there. That keeps me from feeling like I’m choking, at least. My Neuro cautioned me not to use it too much, though, because it would just make my neck muscles that much weaker if I did.

So I’m mostly using it in the car and at church. I need it at church, because I don’t get any support from the chair in Sunday School. We’re meeting in our Fellowship Hall for the next few months while our sanctuary is being renovated, so they were kind enough to move a high back upholstered chair from the vestibule downstairs for me. That did help this last Sunday, but I’m still awfully sore by the afternoon. Sitting up to eat wears me out by the end of the meal.

At home I have a Tempurpedic type U shaped cushion I use on the sofa that gives me some support without doing all the work for me, and it helps a lot. We still try to get out of the house a couple of days during the week so I can walk for a while. I’m extremely slow, usually holding onto a shopping cart for help, but at least I’m getting some exercise that way.

My muscle biopsy is supposed to be Dec. 8, but I still haven’t received the official paperwork about it in the mail. So I’m just in a waiting game for now.

I continue to run Google searches occasionally, trying to find out more about the various types of Myopathy. I was very interested to find out there IS something called Steroid Myopathy! I’ve been telling every doctor I’ve seen that all this weakness started when I was pumped full of steroids after I developed Angioedema from a drug reaction. Who knows… I may turn out to be right!

I’ve also found that there are all kinds of Movement Disorder problems caused or aggravated by Statin drugs. Since Lipitor became more easily available today, and Statins are cholesterol lowering drugs, this is worrisome to me. I stopped taking my cholesterol meds when my liver enzymes went crazy, but there are an awful lot of people who take these drugs. We hear all these side effect warnings so much that I think most people’s brains just glaze over and ignore the warnings.

We had a wonderful Thanksgiving, and I do have a lot to be thankful for. Even though they drive me crazy with their slowness, I’m extremely thankful that we live close to a world renowned teaching hospital at UAB, so I can see their Super Specialists when I need them. And I’m very thankful I have a good Neurologist and a General Practitioner who take the time to listen to me and seem genuinely concerned about helping me get better.

I’m thankful for a supportive family who put up with me, as I know I’m not very easy to live with. It seems like everything frustrates me nowadays. So I’m irritable and easily upset. My poor hubby earns another star in his crown every day!

Steroids – I Hate Them!!!

Day by Day with a Movement Disorder Posted on by 6

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.

Angioedema from Drug Interaction

Day by Day with a Movement Disorder Posted on by  

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.