Epileptic Auras An Ah Ha Moment

[ravenwoodglass]

When I was frequently haveing seizures before diagnosis I would usually have an aura shortly before the seizures began. Mine were olfactory, I would smell things that weren't there. Sometimes it would be like men's cologne but most of the time it was the smell of baking bread. This started when I really young and haven't had a real bad seizure in years but I was thinking of my Dad last night, he was the baker in the family, and this came to mind. My brain must have been trying to tell me something even from the beginning.

Do any of you that have celiac related seizures ever experience the same type of thing? In retrospect I'm glad I at least hallucinated a pleasent smell.

[imsohungry]

I'm sorry...wish I could say that I relate. My auras involve distorted vision, sounds, and touch, but not taste or smell (must be a different part of the brain) take care. -Julie

[Guest nini]

my auras before seizures usually consisted of lights and tastes... would get a metallic taste in my mouth

[Ruth52]

This is so interesting and maybe gives me an answer. I have never had a seizure that I know of, but I occasionally find that I smell something strange, it is an acrid sort-of burning something smell. I had a cyst removed from my cerebellum eighteen years ago and have been taking anti-seizure medication ever since. The medication wasn't prescribed to stop seizures but to lessen to tremors that had started in my eyes. I tried going off the medication for about eighteen months but the tremors returned.

After reading that this smell thing happens to others I guess it must have something to do with the scarred area of my brain

[jcc]

My daughter smelled phantom odors frequently during her seizure days. She smelled different lots of different things.

Cara

[Mosaics]

I haven't ever had a seizure, but I did go through a period of time in which I often smelled bread. I can't really connect it to any incident or time period except that I know it was after my second child was born and lasted for a couple of years. I don't know if it stopped before or after I went on the gluten-free diet.

[lcarter]

I just recently discovered that my visual auras [DX'd as either Simple Partial Seisures or Migraine w/o Headache] are probably related to the Celiac - I found an article in a Neurology journal recently that made the connection and made me wonder if anyone else out them has had similar experiences in connection with having Celiac. This is the first mention I have seen on a blog. Wow, I never would have guessed that the auras and Celiac are related. None of my doctors ever even mentioned the possibility. But, come to think of it, I have not had an episode since October 2008, and it was only one by itself and very mild. I was having them in clusters of 2-4 about every 3-7 months before that. I started the gluten-free diet about 3 yrs ago. Hummmm!!!!!

[mimommy]

This post caught my attention when you mentioned 'aura's'. I'm not sure this is what you are talking about, but this link shows a simulation of a migraine aura that is very realistic. I've experienced these for about 20 years. I don't get migraine headaches very often (I've only had a few in my life), but I get the aura's frequently. I can go months w/o one, then have several in a week. They can be disturbing and make things like reading and driving challenging, as they block out a portion of my visual field. I see flashing lights almost constantly, which are sometimes scary (because I can't tell if it is environmental or just mental ), but mostly it's just annoying. I unfortunately am not one who has found relief from removing gluten from my diet, BUT (I always have to stick my big but in there) , I absolutely believe that gluten is the culprit for many afflictions and illnesses and my daughter has celiac so we all follow a gluten-free diet for her.

Anyway, I have posted this link in the past, but thought it might be of interest here. I went 'undiagnosed' with optic migraine/scintillating scotoma for years and found this last year on the internet. I was shocked to realize that so many people experience this. I'm not sure what impact it has had on my life other than to scare me and make my vision temporarily warble. I don't know if this info is really relevant, but I think it is interesting. And BTW, I get funny smells when I have sinus issues--I ALWAYS smell muffins, and it is strong enough to make me want to gag.

Open Original Shared Link

[Fiddle-Faddle]

  mimommy said:

Open Original Shared Link

What a great link--thank you SO much for posting it!

I have had only occasional optical migraines (looked like the first video, but the auro itself was in black in white--I didn't get any of those pretty colors!), but recently was diagnosed (questionably) with atypical migraine disorder by the neurologist, who thinks that the ENT's diagnoses of Meniere's might be wrong, and that those symptoms might be an AURAL migraine.

It turned out that many of those symptoms were also caused by B12 deficiency, so that is something to look into as well, especially with a celiac diagnosis. Absorption issues usually cause vitamin deficiencies. In addition, many celiacs have reflux problems (that go away with a gluten-free diet) that are treated with acid blockers--and THAT is one of the most common causes of B12 deficiency, according to the B12 websites. (You NEED the acid to properly absorb the B12.)

B12 is also an important part of MS treatment, as well as prevention of Alzheimer's symptoms (also according to the B12 sites)--so it seems that there are LOTS of neuro implications here. So if you are having frequent migraines, you might want to look into B12 deficiency.

In the US, serum levels are considered normal below 200. In Japan, they consider anything under 550 to be deficient--and they have (by far) the lowest rate of Alzheimer's. There is also at least one study indicating that levels below 500 result in neuro problems--I'll try to find that today and post it.

[maile]

*waves* me too! me too!

I get the scintillating aura only in the left eye and just occasionally. My MD told me it was an optical migraine and not to worry about it, I had no idea that it was in any way connected to celiac

I also get classic migraines, although infrequently, and have an olfactory aura with those....similar to what others have said it I start smelling baking or a brewery smell that's overpowering. One of my colleagues in a previous job wore a perfume that really brought that smell out when I was sliding into migraine time though with her I got a distinct appley smell mixed in with the yeasty smell...I asked her one day if she had been drinking hard cider

[TiffLuvsBread]

  ravenwoodglass said:

Do any of you that have celiac related seizures ever experience the same type of thing? In retrospect I'm glad I at least hallucinated a pleasent smell.

Well, this is weird, is there really a connection with this and Celiac!?

I went through a phase, up until a few years ago when it really started to calm down, where I would faint doing anything - standing, kneeling in church, trying on clothes at the mall with my girlfriends, it was horrible. Every time I would faint everyone told me I "shook all over the floor" but doctors never told me I was having seizures - they never used that word anyway.

Before I would lose consciousness, I ALWAYS knew I was going to go down. I knew because of the smell - I told doctors all the time "I have a smell first" but I could never describe the smell. Sometimes they thought I was weird, but one told me that this is not abnormal, as many people smell a smell that they cannot describe but can recognize immediately but as soon as you recognize the smell you're out. I too had the metallic taste in my mouth as another poster said. And tunnel vision. Every time I passed out my body was allegedly stiff as a board. I would just go straight back.

Only a month ago I began a gluten-free diet for all celiac related symptoms but I didn't ever make a possible connection with my fainting and "shaking all over the floor" episodes from beyond the last decade of my life. INTERESTING!!!

So to answer your question, the gluten free diet has DRASTICALLY changed my quality of life, my body, my mind, everything. And it's been less than 30 days. I also have a family history so I am certain gluten has been my poison for quite some time. And also I did have the smell just like you. So hopefully that is the information you were looking for.

Tiffany

[lcarter]

TiffLuvsBread, my gosh, you sound like you are having classic seizures. Have you been to a neurologists? They usually do an MRI and an EEG to check brain waves. Mine showed some slight calcifications and irregular variations in brain waves in the area just behind my right ear. Two different neurologists have dx'd it as either as Simple Partial Seizures or Migraine w/o Headache. One was leaning toward SPS and put me on a seizure med which did help to slow down the frequency or the aura episodes. Then the newer neuro, a few years later, said, "No, I think it is M w/o H", and took me off the medication. That was about 1 1/2 yr ago...I have been gluten-free for 3 1/2 yrs now, and haven't had but 1 mild episode during that time. So, who knows? Here is the article I found:

VISUAL DISTURBANCES REPRESENTING OCCIPITAL LOBE EPILEPSY IN PATIENTS WITH CEREBRAL CALCIFICATIONS AND COELIAC DISEASE: a case series

Journal of Neurology Neurosurgery and Psychiatry 2004;75:1623-1625

[ravenwoodglass]

Thanks for posting this. Maybe someday US neuros will get more knowledge about the corelationship of celiac and the calcifications. Mine unfortunately was clueless and jsut shrugged his shoulders and told us the 'unidentified bright objects' were meaningless. I would suggest that anyone who suspects celiac and suffers from a seizure disorder print out this information and bring it with them to their neurologist.