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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: decongestant

Back to Methocarbamol – Not as Weak – Still in Pain

Day by Day with a Movement Disorder Posted on May 8, 2016 by DBMay 10, 2016 2

I’m finally completely off the Clonazepam and back on the Methocarbamol and Neurontin. And I have a Neuro appointment in June. I had hopes that the time off the meds, while I tried Clonazepam, would make them effective again – but no such luck. They take the edge of the pain, but don’t really stop it. But I’m not as weak as I was at my worst on the Clonazepam at least.

Sinus Infection

I’ve had a bout of sinus infection that caused one side of my face to ache like a toothache. In fact I actually went to the dentist, thinking I had cracked a tooth clenching my teeth in my sleep while I was still on the benzo. The x-rays showed it was more likely a sinus infection. So my doctor put me on an antibiotic. He also told me to stop using the regular OTC sinus medicine I’ve been using, as my blood pressure was way to high. He said to be sure I buy a brand that has HBP on the label, and we bought some on the way home from the doctor.

Antibiotics usually give me digestive problems, but this time it hit as nausea and vomiting. I ended up having to get the doctor to call in something for that. So I haven’t really had what you could call a normal week yet since being back on my old meds. I can still hope that the pain level will subside.

Muscle Pain

It’s hard to describe these pains – I call them traveling pains, for lack of a better term for them. I will ache in one place, say my shin, for 10 or 15 minutes, rub it for a bit  or use a hot pad on it, then it subsides and within a few minutes my other leg hurts in the calf. Repeating the rubbing and heat, and the next thing I know it’s my neck that’s hurting. A few more minutes and my arm hurts. This goes on all day long and all night long. In the daytime, as long as my mind is occupied, such as when I’m working on the computer, it usually doesn’t take over my awareness. But let me get still, like at church? It’s NOT comfortable. The same thing at night – I don’t sleep well, waking up off and on all night long trying to get comfortable.

The odd thing is, I remember waking up during the night screaming as a young child, begging for my Mama or Grandmother to rub my legs. They called it growing pains back then, but now I wonder if I wasn’t already having MITO symptoms.

Posted in Medicines and Supplements, MITO | Tagged allergies, antibiotics, antihistamine, decongestant, Gabapentin, HBP, High Blood Pressure, methocarbamal, Methocarbamol, MITO, Mitochondrial Myopathy, muscle spasm, muscle spasms, Neurontin, pain, sinuses, weakness | 2 Replies

Coughing, but OK

Day by Day with a Movement Disorder Posted on April 18, 2009 by DBMay 24, 2016 2

Well, I’m still coughing, and the x-ray came back all clear, which is what I expected. I was a little concerned that it might be asthma, since it was worse in the mornings and at night. That fit those symptoms. But the doctor’s nurse said it’s allergies and sinus drainage pooling in the main bronchial tube.

So, I put myself back on an OTC antihistamine that I’ve had good luck with before, and it’s just wait the stuff out now.

I’ve gone back to exercising as much as I can. And we went on our Date Day yesterday. We had to quit a little early, though, as I was exhausted. I’m back in that de-conditioned state again. It will be awhile before I’m back up to the level of exercising I was doing before I got sick. I’m thoroughly enjoying the recumbent bike, and hubby is using it too. It’s sitting in the middle of our living room, so we can watch TV and bike at the same time. Not high decorating style for sure, but right now I just don’t care. If we have company it can be moved temporarily.

I’m pretty much in the habit of taking the glucose readings now, and I’m using FitDay to log in my food intake and exercise minutes. I found this site when our daughter was on a feeding tube, and we needed to keep track of her eating. It’s really a good way to monitor not only calories and carbs, but all the major nutrients.

I’m going to postpone my Physical Therapy session due for next week. There’s no point in going right now, as I am weaker than I was last time. I’ll just keep working on what he has already given me. I do have my annual OBGYN appointment next week, and I’m anxious to see how my bone density is coming along. I’ve been on Calcium now for 2 years, so hopefully I’ve improved some. I don’t drink carbonated beverages, and we get lots of nutrients from the raw spinach salad we eat almost every day.

So, we continue to do what we can to keep our health level in as good a shape as possible. I continue to read everything I can get my hands on about diabetes, too. We had a leaky water pipe out in the yard that got fixed today, so all in all I’ve had a great day.

Posted in Symptoms | Tagged antihistamine, blood glucose, coughing, decongestant, diagnosis, exercise, exhaustion, Friday Date Day, Quality of Life, recumbent bicycle, sinuses | 2 Replies

Can’t Take Meds I Used to Take

Day by Day with a Movement Disorder Posted on September 26, 2007 by DBSeptember 26, 2007 6

I’ve been working out in the yard a good bit lately, as part of my exercise. I’ve made some headway with our yard, but I’ve also come in contact with poison ivy somewhere along the way. I am extremely allergic to it, so I’m broken out over a large part of my upper torso, front and back, on my neck and face, and even in my hair. I have no idea how that happened. We have new cats outside, too, and I may have picked it up cuddling them.

So, I pulled out my trusty Benadryl, in addition to the topical anti-itch meds I always have on hand. Benadryl makes me sleepy, so during the day I’ve always used something like non-drowsy formula Sudafed. When DH went to the store he couldn’t find the exact same Sudafed I was about out of, so he took what appeared to be a similar medicine to the Pharmacist to make sure it was OK for me to take it. He made sure he told her I had Parkinson’s, and she said it would be fine.

I hadn’t even thought about checking for PD drug interactions, so I’m glad hubby did. Particularly since I did take one dose of the 12 hour Sudafed with Pseudophedrine Hydrochloride in it this morning, and I’ve felt yucky all day long today. When I looked on the new box to see how many to take, despite the fact that DH had asked the pharmacist if it was OK, there in fine print, among the list of conditions that made using it unsafe, was – you guessed it — Parkinson’s. The same warning was on my old box of meds, too, and I hadn’t even thought to look. That’s BAD.

So, I called our local Pharmacist to double check, and sure enough, I can’t take it. DH has gone there now to get Chlorotrimiton, which has nothing but an antihistamine. It doesn’t have any decongestant in it. My Zelepar is in the MAO class of drugs, so I have to pay attention to things like that.

As careful as I am to check on drug interactions with prescriptions, it never occurred to me to check out these over the counter meds, as I’ve taken this combination for poison ivy for years. BAD GIRL, BAD GIRL!!

I’ve hopefully learned my lesson, though, and will not let old habits take over again. Cause the old gray mare ain’t what she used to be!!

Posted in Uncategorized | Tagged antihistamine, decongestant, drug interaction, Mao Inhibitor, Parkinson's, pharmacist, prescriptions, PWP, Selegiline, Zelepar | 6 Replies

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