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Twitching due to Dysautonomia? Maybe, Maybe Not.

Before I was diagnosed with Narcolepsy, I had a tremor in my hand and my eye would get twitchy. I also dropped things, a lot. Other people with Dysautonomia complained of similar symptoms and it seemed logical that whatever was going on with me had something to do with my Dysautonomia. My doctor noted my issues, but didn’t really have a clue what it was or what to do for it. I found suggestions online that adding magnesium and potassium may help. I gave it a try and thought it maybe helped a little.

Then I was diagnosed with Narcolepsy. My sleep doctor asked me if I ever had muscle weakness with emotions, like a knee buckling when I laugh or something similar. I said no, but my knee sometimes gives out randomly for no reason. She said that meant I didn’t have Cataplexy.

I started on Xyrem, a medication used to treated Narcolepsy, and I stopped falling. I had believed I was falling because I was dizzy due to Dysautonomia. Nope. I was falling because I had pretty severe Cataplexy. I also stopped twitching, and shaking, and the random tremors disappeared.

If you have Dysautonomia and random twitching, talk to your doctor to try to figure it out. It may be that your potassium is low, or you may have some other condition causing it. In any case, you owe it to yourself to determine the cause because maybe you’ll also find a solution.

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Don’t Accept Limited Spoons

One of the main symptoms of Dysautonomia is fatigue. After diagnosis, I assumed I was tired all of the time because of my chronic illness. I read the Spoon Theory and accepted that as my new normal. Years later, when I was so tired of being tired all of the time, I asked my doctor if there was anything that could be done to get my sleep under control.

At the time, I couldn’t get to sleep until after 1 am even though I was tired all day long. I could sleep for twelve hours or more and still lay down and take a nap later in the day. There were times when I felt like I couldn’t possibly stay awake for another minute, and I would have to lay down to rest for awhile.

My doctor referred me to a sleep specialist. I filled out the Epworth Sleepiness Scale, which confirmed I was indeed sleepy. After a sleep study and a MSLT, I was diagnosed with Narcolepsy. The “fatigue” I had been living with was actually excessive daytime sleepiness.

I honestly believe anyone with Dysautonomia who is excessively tired, fatigued, or sleepy should have a sleep study done. From what I’ve seen online in forums and support groups, I am far from the only person with both Dysautonomia and Narcolepsy. I’ve also seen many people in Dysautonomia groups discussing symptoms their doctors can’t explain that sound suspiciously like Narcolepsy.

I am not saying everyone with Dysautonomia who is sleepy or fatigued has Narcolepsy. Though, I do believe there are some out there that do. What I am saying is no one should accept that they are going to be exhausted permanently without exploring why and looking for ways to improve the situation.

For example, my daughter was having sleep issues, and worried she may have inherited Narcolepsy from me, I took her to my sleep doctor. It turned out that she has POTS. Her heart rate was shooting up in the middle of the night causing her to wake up and have not so restful sleep. After experimentation, we found the right medicine to keep her heart rate down. She’s staying asleep at night and her quality of life has gone up.

When you live with limited spoons, you need to do what you can to increase the number you have. Do not accept that the fatigue you are feeling is “normal” without first looking for other, treatable causes.