Hi everyone I'm hoping to find others with similar symptoms!

Since May 2011 I having been having episodes in the morning when I am unable to move or make any sound, for anything up to 4 hours. I have limb jerks, migrainous head pain, tingling, afterimages, photosensitivity etc

Sometimes it starts after I've been out of bed (eg to toilet) or have been talking on the phone, so it's not always straight as I wake up, but it's always in bed. I can't always control opening my eyes but if they're open I can move them around and can usually control blinking.

The shortest has been about 10-15mins and the longest 4hours, and I've had a few days when I've had multiple episodes one after the other.

Afterwards I feel drained, tired, and the head pain and neuro symptoms persist for a while. In between episodes I have varying neuro symptoms and head pain to varying degrees. At the moment I'm getting several a month.

MRI and CT when this started were normal. Neuro has diagnosed chronic migraine syndrome, including the paralysis as a "rare but known symptom". I am now on Propanalol, Nortriptyline and Topiramate (still increasing the dose).

I'm not convinced on the diagnosis but I'm wondering has anyone had anything similar??

Hi,
Still trying to figure out my own temporary paralysis. Only happened once after range of motion exercises and tens to my lower back.
Do you by any chance have malignant hyperthermia? If so Google other conditions that go with it. This is an extremely long shot and not a diagnosis.
Good luck I hope you find an answer.
Redcat

I have also experienced temporary paralysis. It comes and goes in clusters for me since 2005. Just this year I was diagnosed with Papilladema and idiopathic intracranial pressure. I chalked it up to the pressure in my head since I couldn't find a neuro that thought I really suffered from paralysis. We also thought it was potassium related but had an episode in doctors office and they tested my levels and they were fine. So we scratched that off the list. I also have TOS, Myoclonus and dystonia. I'm currently working with doctors to see if I have both my first ribs removed if it would get rid of my neuro problems. Sorry to hear you are dealing with this as well.

thanks for your reply redcat - sorry about the delay replying, not been on for a while!

I looked up malignant hyperthermia - i'd never heard of it - but it doesn't fit my symptoms at all. thanks for trying though

Hi, thanks for your reply and sorry for the delay replying - i've not been on for a while.

I looked up the various conditions you mentioned, but it doesn't fit with any of them. I'd wondered about potassium when this first started and I started trawling the internet, but it doesn't even seem to fit with that. I'll keep looking, thanks for trying

Have you heard of Ehlers Danlos Syndrome? I just recently found out that I probably have EDS. Quite a few people with Ehlers Danlos Syndrome have complained about having temporary paralysis. Just a thought. Wishing you luck in finding your answer.
Redcat

I've heard of it but don't know much about it - I'll look it up - thanks :-)

Just wanted to pop in and let you know, if they suspect potassium to be an issue. It's possible to have "normal" potassium levels and still have an attack of paralysis, it only takes just the slightest shift in your normal levels for someone with hypo or hyperkalemic periodic paralysis to have an attack.

I have hypokalemic periodic paralysis and I very rarely have levels lower than the suggested normal range... Well that we know of, we don't even try to get me to the doctors during an attack now that I'm diagnosed. If you search the condition you could find things that should trigger an attack and see if you can make one happen. Things like carbs or rest after exercise and steroids all trigger attacks for me. Steroids are a BIG no-no, they put me on IV steroids for an MS attack and I ended up going to the hospital by ambulance and staying for five days. In fact, that was the only time my potassium levels were out of the "normal" range, and it was only slightly lower than the low end of normal.

I hope you all find answers. I remember the the frustration of trying to get a diagnosis. The horrible feeling you get when the doctors don't believe it's happening, you start to question yourself and wonder if it's really happening. A lot of doctors think that if they can't explain it then it's "all in your head". Well that's not true, so if they make you feel that way, find another doctor. Just keep fighting until you find your answers.

Good luck to all of you!

Nemsmom
I just got started on a new medication for my glaucoma. It is also used to treat chiari like symptoms. Within days I have seen the first improvements in my chiari symptoms since my accident. I wish my neurologist had listened to me almost 2 years ago.
Redcat

Hi Nemsmom, do your triggers always bring on an attack? HKPP is something I'm wondering about as it fits in many ways though not all. I'm keeping a note of food at mo and trying to reduce carbs and sugar to see if it makes any difference - suspect it won't but worth a try :-)