Unexplained Seizure And Stroke Like Symptoms

[mdohtnla]

I hope not to make this long but I am in dire need of advice. 

I have been having these episodic seizure and stroke like symptoms.  It starts with my eyes fluttering.  I typically slump over. My legs work but I can't lift my head.  Sometimes the left side of my face goes numb.  I am completely unable to think or speak.  It's like my mouth won't move right.  If I can move my hands/arms, then I can not write or text.  I also have difficulty walking (the leg I broke in a car accident gets really tight)

 

This happens when I  wake up, at work,  walking, in shower, and sometimes in mid conversation, and once while driving (don't drive anymore).

 

I've been to many doctors. Some nerve in my neck is crooked or slightly blocked.  Referred to neuro.  He thinks its a seizure.  Long story short after several EEGs, MRI's, an MRA, and blood test they find: white spots on brain (unusual for age), positive western blot for Lyme (IgG), negative EEG, negative MRA. No strokes. negative spinal fluid. negative for lupus.  Later, negative for Lyme on a C6peptide test. took Topamax and that stops migraines I was having, but not the episodes. referred to psych. she says no mental health issues after examining me. continue to see her because I'm so stressed about not feeling well.

 

My general diagnosis is  complex migraines.  At some point I had a seizure like episode and was diagnosed with a complex partial seizure, but that was changed after the EEG's.

 

June 2013: Go alcohol and gluten free.  Then just gluten free. Miraculously I had no episodes for a week.  After 2 weeks my hands and feet aren't numb.  

 

Oct 2013: Celiac panel is negative. My red blood, iron, and hemoglobin are all very low

 

Now: Despite being gluten free, I find that I constantly get "glutened" by little things (bun accidentally left on my burger, corn tortillas that aren't really gluten-free, medicines etc) .  One glutening can result in multiple episodes.  The longest I've gone is a week and a half without episodes.  Before June I had them everyday multiple times and they were very severe.

 

I can't find a doctor that will answer my questions to save my life.  I live near NIH, so you would think there are plenty of intelligent docs here but I have been largely unsuccessful.  I like to work hard and I am ashamed at my performance (work and school) because I have these uncontrollable episodes.   

 

Does anyone struggle with this?  What doctor did you go to?  Have you been able to get anything other than "don't eat gluten"?  Are you able to get a diagnosis?  

[GF Lover]

Hi and welcome to the Forum.

 

Are you talking about the Vagal Nerve in your neck?  This would explain your issues.  If you ate gluten free since June then you would test negative in October.  You must be eating Gluten for an accurate test.

 

Colleen

[kareng]

I

 

 

Now: Despite being gluten free, I find that I constantly get "glutened" by little things (bun accidentally left on my burger, corn tortillas that aren't really gluten-free, medicines etc) .  One glutening can result in multiple episodes.  The longest I've gone is a week and a half without episodes.  Before June I had them everyday multiple times and they were very severe.

 

 

 

If you have Celiac - those "little things" are too much gluten.  Eating burgers off of buns and foods with a little gluten in them means that you have not been gluten free. However, I'm not sure if that is causing your episodes.  If you believe gluten is the cause or were diagnosed with Celiac, you need to eat very gluten free.

[mdohtnla]

Hi and welcome to the Forum.

 

Are you talking about the Vagal Nerve in your neck?  This would explain your issues.  If you ate gluten free since June then you would test negative in October.  You must be eating Gluten for an accurate test.

 

Colleen

 

Colleen, 

 

Thanks for responding.  I don't know which nerve it was.  My doctor's are not very good at being informative.  However, I will ask and see the next time I go to the doctor. 

 

Thanks!

[Kamma]

Hello mdohtnla

 

It is frustrating and not just a little frightening to have something wrong with you and take a battery of tests to have them come back negative when all you want is a diagnose and a plan of action to get better.  One thing you might want to investigate further is Gluten Ataxia as some of the symptoms you described closely fit with it such as trouble walking, motor skills impeded, seizures and slurred speech/brain fog.  In addition, there are a large amount of gluten ataxia patients that have the bright white spots on the brain and also suffer migraine as a reaction to gluten.  If you found some relief of the symptoms going gluten free, this could be the underlying cause.  

 

People with gluten ataxia appear to be very sensitive to minute levels of gluten and the symptoms take longer to subside than for people with celiac.  Recovery can take anywhere from a few months to up to a year.  It also involves an immune response different than celiac in that it is the TTG6 enzyme that the immune system reacts to (as opposed to the TTG2 enzyme in celiac) and the antibody attacks the Pukinje cells in the cerebellum part of the brain.  A large number of people with gluten ataxia test negative for celiac.  There is a test being currently developed for the TTG6 enzyme but it's not on the market yet. Damage could be permanent if gluten is continually ingested.  

 

I'm unclear from your post if the nerve in your neck was discounted by the neurologist as being the culprit of your symptoms.  If so, and you want to investigate gluten ataxia further, Dr. Marios Hadjivassilliou is the leading researcher on gluten ataxia and you can google for his research papers.  A quick overview can be found on Jane Anderson's site here:  http://celiacdisease.about.com/od/GlutenAtaxia/a/What-Is-Gluten-Ataxia.htm

 

I hope you're able to find some answers.

 

Take care,

Kamma

[eers03]

I don't have an answer but I do have a suggestion for you to investigate and see if it's right for you…  

 

1. Gluten Free

2. Alcohol Free

3. Casein Free

 

The first two are absolutes in my mind.  As for the casein, this is meat and dairy.  Give yourself a month or two and if you find symptom relief consider adding your meat back.  If symptoms return, continue casein free.

 

When I have read about people having severe neurological and muscular symptoms they have gone gluten-free, alcohol free, and casein/dairy free and in many instances have alleviated their symptoms over the long term.  Its worth investigating and trying.

 

Lastly, if you have a nerve that is being pinched if you have insurance you might consider seeing a physical therapist who can help you find ways to strengthen certain muscles in your neck or back to help take pressure off of that nerve by making stronger muscles take more of that pressure.  A PT knows how to tighten the right muscles and relax the corresponding muscles to make these things work.

 

Also, if you consume caffeine, I would reduce the intake.  It may help with some of the anxiety you may be having.  I know I needed to do this once upon a time to "dial myself in".

 

Good luck.

[GF Lover]

I don't have an answer but I do have a suggestion for you to investigate and see if it's right for you…  

 

1. Gluten Free

2. Alcohol Free

3. Casein Free

 

The first two are absolutes in my mind.  As for the casein, this is meat and dairy.  Give yourself a month or two and if you find symptom relief consider adding your meat back.  If symptoms return, continue casein free.

 

When I have read about people having severe neurological and muscular symptoms they have gone gluten-free, alcohol free, and casein/dairy free and in many instances have alleviated their symptoms over the long term.  Its worth investigating and trying.

 

Lastly, if you have a nerve that is being pinched if you have insurance you might consider seeing a physical therapist who can help you find ways to strengthen certain muscles in your neck or back to help take pressure off of that nerve by making stronger muscles take more of that pressure.  A PT knows how to tighten the right muscles and relax the corresponding muscles to make these things work.

 

Also, if you consume caffeine, I would reduce the intake.  It may help with some of the anxiety you may be having.  I know I needed to do this once upon a time to "dial myself in".

 

Good luck.

 

Errs,  Did you mean to include meat in the casein category?  There is no casein in meat, Casein is only in dairy.  Maybe you meant something else regarding meat?  The only way casein can get into meat is intentionally putting it there by a manufacturer.  Then it becomes "mystery meat" lol.

 

Colleen

[mdohtnla]

Thanks everyone This has been really helpful.  I actually have gone dairy free.  I forgot to include that.  I will follow up with your suggestions.  So glad I posted on this board!

[Liza K]

On 11/8/2013 at 5:32 AM, gluten-free Lover said:

Hi and welcome to the Forum.

 

Are you talking about the Vagal Nerve in your neck?  This would explain your issues.  If you ate gluten free since June then you would test negative in October.  You must be eating Gluten for an accurate test.

 

Colleen

Hi my name's Liza, the vagus nerve condition they're speaking of is a very very rare condition is called swallow vasal vagal syncope but it is the vagus nerve, fact since 1780 and there's only 100 registered cases in the world with this condition. That's how rare it really is people that people have actually been diagnosed with this condition by a autonomic neurologist and I am one of those people. I have vagel vassal swallow syncope. The word "vagus"is a Latin word  meaning traveling which is where it's got its name for the way it travels through your body. Connect your inner nervous system with your outer nervous system and it allows all your information to get back to your brain knows what's going on and so your body knows what to do. It's the X 10th cranial nerve the  of the brain  it's the main Central Highway for your body. No I'm not a nerd. I just have first-hand experience at this for 8 years every time I had swallowed they would tell me I was fainting when in fact I wasn't fainting my heart was stopping. When I swallow my vagus nerve cuts off circulation to my heart VMI esophagus, and my heart would stop for up to 18 seconds in the beginning it was for two or three seconds but later on it got worse and worse. I have a pacemaker that allows me to swallow without my heart stopping  now. And that's what they're referring to when they ask if you have a vagus nerve issue. And when you swallow if these things are happening just make certainly to check with a heart doctor to have a monitor put on to check it out. Also if you are having these issues when you eat you need to not eat when you're driving you probably should go and check and  have this looked into.

Edited June 1, 2018 by Liza K

[Squishyleo]

Look up POTS.  Postural Orthostatic Tachychardia Syndrome. I was diagnosed with this by tilt table test after a scary stroke-like episode.