Anyone get temporary paralysis episodes?
 

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! :hug:

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!

still waiting
 

just thought I'd give an update. Neuro didn't receive the first referral so a 2nd was sent, which they got 4 weeks after 1st was sent. I've now been told it'll be early June before I'm seen :-( and that'll be by the general neuro consultant again - I had hoped they'd be sensible and pass me on to the headache and migraine consultant they have there, as there's clearly more specialised knowledge needed. Meanwhile, having had 9 episodes in each of Jan and Feb, I've had 9 episodes in March with 6 days left to go - they just keep getting more and more frequent slowly but surely. Last year it took me till the middle of September to have this many episodes from January! It's worrying.

I have intermittent episodes of paralysis of my right leg. It lasts anywhere from a couple weeks to 14 months. When it happens, I can't move my leg or feel anything. It will not hold me up or walk, and I end up using my wheelchair. No doctors can figure it out. I was scanned every way possible when it first happened in 2010, and everything was negative. Since, I've had a pacemaker put in and cannot have follow up MRIs. I have numerous other health issues (some which mimic MS type disorder, think bladder), orthostatic issues, autoimmune issues and recently got diagnosed with intracranial hypertension and had a VP shunt put in three weeks ago. Crazy world we're living in, and I'm one of the test subjects!

Thank you for the update. I'm sorry this is taking so long and has been such a run-around.

I know it's not what you want to hear but it can take years to get a diagnosis, especially if you have something rare or are presenting in an unusual way.

Just remember to document everything, keep copies of all tests and doctors visits and go where you need to for support, whether that's here or to a close friend or family member.

Hang in there!

Sorry you're going through the crazy world of unknown medical problems as well.

I don't think attacks of hypokalemic periodic paralysis last that long, but you could always bring it up with your doctors to see if it might be whats wrong.

I hope you find out what's going on soon. I know it can be very frustrating.

update
 

I have an appointment with the same general neuro consultant again on 27th May. I had 11 episodes in March in the end, and after some reading around, decided to start taking Magnesium, Vit B2 and CoQ10 (4th April) - everything I've read said 3-4 months to have any effect but April seems to be much fewer episodes so far - yippee!! - only 4 episodes so far :-) could just be a coincidence but don't care! Will let you know how appointment goes - want to get off these other meds, cos they're clearly not working, and get something else that does work!!

How did your appointment go? Sorry I didn't ask sooner, lotus of stress here.

Hi Nemsmom and Jusf... hope you have found your answers Jusf,. I too have a type of hypokalemic periodic paralysis with my diagnosis being Andersen Tawil Syndrome. Hear issues are also part of the Andersen Tawil syndrome and many eventually require cardiac assist devices. Through working with my Doctor we have discovered that I do well with a serum level of 5.4 to 6. I paralyze when my potassium levels are within the normal range. This means I must battle my bodies attempts to keep me in homeostasis. I take a medication that helps me hold extra potassium and also take loads of prescription potassium.

Hi jusf,

It sounds like periodic paralysis. Have you already seen Prof Mike Hanna at the National Hospital for Neurology and Neurosurgery in London? He is the best in the UK on this area.

Maybe
 

It sounds like Functional Neurological Disorder (FND). It also has several other names: NEAD, Conversion Disorder, Pyschogenic Non-epileptic Seizures (PNES), Psychogenic Movement Disorder, etc.
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I hope you find the answers that you need. If it is the above, it's a very long road!!