Skip to content
Short-term Locked-In Syndrome ??
Doughgirltoo posted:
Diagnosed with seizure disorder, PCS, after 17 years of "panic attacks." PCS have been controlled but 6 different medications have succeeded and failed over the past 6 years since diagnosis (age 39). Combos have worked and now have been on combo of two (tried 3 after 2nd but causing side effects). In addition to PCS, I have had 4 "seizures" which are identical to Locked-In Syndrome, only temporary, lasting as long as 3 hours. It is the only thing that is anywhere NEAR an explanation. Each occurred with increases or changes in medication. This has been terribly frustrating. Is there anyone who has experienced anything like this? I am on my second 6-month driver's license revocation because of these "seizures" but treatment has not been found for them. A cure would be nice but control is sufficient.
dancer86442 responded:

Typical seizures of any kind usually only last for 2-3 minutes, not 3 hrs. Those that last 20 min or longer, non-stop, as opposed to off & on (clusters) are known as Status Seizures & are considered Very Harmful. In fact, they Can Kill you. I think you should read this Link.

Unfortunately, there is No 'cure', only 'control' for seizures. I agree w/ the site you just read. Start a Journal! More Info as to what to include under Tips. A Journal Can help you & your DR figure out what is happening or what triggers your 'episodes'. Although, from what you have said, I would consider the 'episodes' as a possible reaction/side effect to your medications/doses.

As far as driving: I Understand how frustrating it can be. But, Until your 'episodes' Are controlled, Please Don't! Anything that interferes w/ your driving capabilities deserves having your license revoked. Our town just lost an 8 mth PG woman, who decided for some reason to drive. She drove her car off a boat ramp, straight into the river. Her family reported she had a seizure disorder. There are Lots more stories similar to that happening all over. In fact, some of our previous members, who, fortunately survived, have reported their 'wake-up' calls. And they now have even more severe Seizures.

The link I posted suggests 'toxicity' as an underlying cause to some 'episodes'. If you can afford it, you could see a 'Homeopathic MD' (Naturalist) to determine if this is your problem.

You may find this article of interest, also. Mark Hyman, MD: 5 Steps to Kill Hidden Bugs in Your Gut That Make You Sick

There are Diets that may help raise your seizure threshold, also. Atkins, Modified Atkins & the GARD diet are all used & work for Some. As w/ any Epilepsy treatment, "What works for one may not work for another". Discuss this w/ your DR First! Just be sure you do Lots of 'homework' cuz, Most Neuros disagree w/ Diets & would rather you take their prescribed meds. Which is why I suggested a Homeo Doc.
More 'homework'.

Hope this Helped. Hugs!

Love Candi
ju1802 responded:
I know it's a couple of years ago, wonder if you're still on here? I've been having the same temporary 'locked-in syndrome', together with various other symptoms, and neuro diagnosed it as chronic migraine syndrome (I've had migraine since I was 6). It's been just over two years since it started, they last between half hour and about 4 hours - I'm on Propanalol and Nortriptyline as migraine prophylaxsis. wondering how you'd got on?
undefined replied to ju1802's response:
Yes. I've had three episodes (all within a years time) when I was in a seizure, seemingly unconscious (or partially conscious), was aware of what was happening, and couldn't get myself out of it. It was VERY frightening!!
ju1802 replied to 32656090's response:
How long were the episodes? Do you have a diagnosis or are you on any treatment? I've got more used to them now but certainly at first they were very frightening! Were you able to move at all during the episodes? I can only blink and move my eyes, and I don't always have full control of that even.

Helpful Tips

South Carolina Epilepsy Support
Was this Helpful?
1 of 2 found this helpful

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

For more information, visit the Duke Health Epilepsy Center