Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Functionally Paralysed

Terror. That one word sums up how I felt for 7 hours last night. My face had not been good for most the day, and by the evening my tongue didn’t want to stay inside my mouth and my jaw was slightly deviating. This eventually became rather painful so we resorted to Oramorph and I tried to take a nap in the hope of sleeping the spasm off. However the symptoms I woke up to terrified me to the point of tears.

My brain had disconnected from the lower half of my face leaving me functionally paralysed. This meant I could not open my mouth, talk, eat, drink, swallow, take meds etc. I could do nothing, and I could feel nothing. I was terrified. Now I’ve had a similar thing happen to my legs before but whilst that unnerved me I could deal with it as I could communicate what was going on and they always came back fairly quickly. However this time it took 7 hours to come back and with each passing hour I grew more and more scared. I had no idea what to do.

Doctors have no idea why this happens hence the term functional put in front. My neurologist thinks that for me this is my body’s way of coping with pain. When the pain triggers a response from my flight or fight system, my body chooses to flee by shutting itself down. I have no control over this and it scares me. The medication that can help with it I am unable to take as it interacts with other medications that I rely on.

Last nights 7 hours of facial functional paralysis was a new level of fear. I had no idea what to do. I could not communicate my fear. I tried my best to sleep, in the hope that relaxing and resting would help. However I found it very hard to relax and get to sleep. I managed some sleep but it was very on and off, every time I woke up to discover that it was still paralysed I became more unsettled.  Thankfully at 3am my brain reconnected and I quickly took all the pain meds I could and went back to sleep.

This morning everything seems to be working, however I am on the weary side of it all, and still rather nervous. I am only eating very soft foods and trying not to talk to much to try to avoid triggering anything else off. Luckily I have an appointment coming up on the 8th with my neurologist so I can discuss this incident with him and get an idea of what to do should this happen again – hopefully it won’t.

I hope that I shall never experience this disturbing symptom again.

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Comments on: "Functionally Paralysed" (6)

  1. sandy evason said:

    Becky, how terrifying for you, a living nightmare no less. I fervently pray that this will never happen, at least, not to such a severe degree, to you ever again. Sending my love and my prayers that you may remain strong and that a solution to this heinous disease my soon be found. Sending loads of love and huge hugs xx

  2. So sorry to hear what you are suffering with. I suffer with very similar symptoms and have not yet ever heard or met anyone going through the same thing. Have lots of rest and continue with soft foods and resting your jaw. I hope it passes soon and you are able to get somewhere with your neurologist.
    A

  3. Linda K Buck said:

    This sounds terrifying. I am so sory this is happening to you.

  4. Just so glad to hear that you are okay again, the functional paralysis is the worst. It’s my worst fearful times too, and as you say there is absolutely nothing we can do. Nothing anyone else can really do for us either but be there for us xx

  5. Hi I have the same thing like you. And I have tried to use TENS machine and also massage the pressure points on hands, digits and head. They worked well on me and shorten the frozen/ paralysis time. You can also try to use a hair brush to brush your head hard. That works sometimes. Give a try and hopefully that can shorten the paralysis.

  6. I don’t know if it was the same situation you experienced but sounds very similar. About two years ago I was in the emergency room for kidney stones and while In the waiting room I felt like I was having a stroke. My hands and toes clenched up and I couldn’t really move my face and talk. I had to mumble to my husband and bang on the wheelchair to get Doctor ASAP something I felt was very wrong. But because I couldn’t communicate good he didn’t understand my sense of urgency. The doctor said it was just anxiety and from pain but I’ve had anxiety my entire life and kidney stones at least four times I knew that wasn’t it

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