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.

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 :-)

There's more than one form of periodic paralysis linked to potassium and each responds to different triggers and has different symptoms.

I do not always have an attack from eating carbs. One of my biggest trigger is rest after exercise. But I find that I react a lot stronger to a combination of triggers. If I combine a few of my triggers, I will definitely have an attack. Of course there are a lot of medicines that trigger attacks, those attacks are the scariest.

Try keeping a diary without changing your normal routine. It might be helpful. Then change your diet or routine one thing at a time, that will make it possible for you to find your triggers.

If you bring that without bringing in any information about a certain disease to your doctor, you're more likely for them to listen. They tend to hate when their patients come up with the answers before they do. Do you have a good doctor you're working with?

I hope you find your answers soon! I'm always here if you need someone to talk to.

Thanks nemsmom :-)

I've mentioned the idea of periodic paralysis to my gp - she's referred me back to neuro as these episodes are just becoming more and more frequent (roughly every 3rd day at the moment) and said she would mention PP in the letter. I'm waiting for an appointment.

So far this neurologist has insisted he is correct in his diagnosis of chronic migraine syndrome - I'm hoping he's prepared to at least consider other things as I've tried his drug suggestions and continued to get worse :-(

I've tried, over the last week or two, having much less carbs and sugar, but the attacks have been as frequent. I'll try your suggestion of eating as I normally would and see if there's a pattern or trigger I can pick up.

Thanks for your help :-) I'll keep you posted.

Changing my diet was never enough to help stop the attacks. But there are a lot of meds out there and it's a matter of finding the one that works and changing your diet and routine to help.

Cutting out carbs won't help if you have HyperKalemic Periodic Paralysis instead of HypoKalemic Periodic Paralysis. When you change things you could also try increasing or decreasing your potassium intake.

If you aren't getting anywhere with this neurologist you can and should ask for a second opinion.

Thanks for keeping me up to date!