Underlying causes for seizures

[masterjen]

Some of the folks here have definitive causes for their seizures/epilepsy identified and it seems most often it is an identifiable lesion (eg. scar tissue, tumor, congenital issues like cortical dysplasia, etc.); in other words, something more or less black and white.

That does not cover the majority of us, however, as most folks here it would seem have no identifiable cause for their epilepsy (regardless of EEG outcome). For those of you in this category:
1. do you have any congenital or other long-standing physical or medical conditions that seem to fall into the syndrome category?
2. has your neurologist or other specialist ever done specialized testing (lumbar puncture, genetic testing, EMG, muscle or nerve biopsy, etc.) to identify the cause of your seizures?

 

[notime]

My doctor had an MRI scan with dye injection done to look for any possible scaring of the brain or anything that could be wrong, and from an older scan (I had because my gp thought there was something wrong with my pituitary gland) and he had a neuroradiologist take a look and compare the two and they found nothing wrong except a sinus infection in my older MRI scan.

Edited:

I also heard that even if MRI scans do not reveal any scaring on the brain... There can still be micro scars which exist, but no current technology can detect it... I could be wrong.

I then had an EEG which showed generalized spikes, so from that he made a diagnosis.

I have primary generalized epilepsy, and sometimes it's called idiopathic which means unknown cause. That's not really true, they consider the cause is from genes. This is the issue I have, they say there is nothing physically wrong with my brain, but yet something causes a seizure, what causes the neurons misfiring?.. I've been trying to learn why this is, and yet I cannot. My doctor claims that gene therapy can be a possible cure for it, but probably won't happen within my life span. Again, how does DNA cause your brain to misfire, and even if you're an adult where your body is no longer developing; how can you get gene therapy to cure it? This is what I want answered.

He has never done genetic testing, and I wish he would have. They are still looking for genes that can still be connected to the reasons why you have epilepsy perhaps? Perhaps it just costs too much for it, and the insurance refuses to pay? I don't know. My doctor claims that perhaps one day they can take a sample of your DNA and scan it to look for which drug would be best suited for you.

Anyway, this is just from personal experience and what I've learned.

 

[daisy.girl]

I have multiple sclerosis, with about 10-15 small lesions that show up on my mri. Not sure if the lesions are the cause of my seizures. However, I did read that MS patients are 3-6 times more likely to have seizures.

 

[Vivbama]

I'm convinced that mine was caused by low blood sugar. The low blood sugar was caused by me not eating. I haven't been eating right for about 6 months. I get busy & skip meals. Some days I'll only eat one small meal. My husband has been telling me it's bad for at least a year. The day I had the seizure was 4/28. I live in Alabama & we had the bad tornado outbreak on 4/27/11. We had another tornado outbreak on 4/27/14. The tornado sirens went off all night. on 4/28 we were going to Georgia to visit my husband's new grand child & I was worried about leaving my daughter home alone because we were supposed to have more tornadoes. I didn't eat for 1 1/2 days & had the seizure on 4/28.

So for me it was a combination of stress & not eating. I've been eating better & already feel like a new person. I read that low blood sugar causes all the side effects I was feeling. (anxiety, dizziness, worrying & seizures) I was taking Xanax for anxiety & haven't even needed it since I started eating better.

 

[Dline]

I have biopsy diagnosed Celiac Disease. There has been found a direct link to epilepsy and Celiac--lots of online articles.

I'm convince that more people should get tested even though they may not experience symptoms (it is common to be asymptomatic with celiac--the longer undiagnosed the worse the neuro and intestinal damage). I had VERY FEW spots on my brain that were even remotely abnormal, so my nero labeled it idiopathic.

But there is also a lot of research regarding Celiac and other neurological disorders. It's a simple blood test to find out if your gluten antibodies are high. Couldn't hurt for anyone with epilepsy or other immune/autoimmune diseases to get checked!

 

[Cint]

Before I was diagnosed with E and I was experiencing those weird lightheaded, spaced-out feelings. My dr. back then told me I was hypoglycemic without doing any sort of blood work. These feelings intensified and after about 6 months, I experienced my 1st bad TC seizure and ended up with a serious burn injury from the seizure. I went thru all sorts of testing and was then diagnosed with epilepsy. Don't know why or how I ended up with it. Never had a head injury, meningitis, encephalitis, etc. However, my epileptologist once asked if there was abuse in the family growing up because any sort of verbal or physical abuse can/does damage one's brain. I do have a damaged hippocampus and that is where my seizures originate from.

 

[Cint]

I'm convinced that mine was caused by low blood sugar. The low blood sugar was caused by me not eating.

Have you been to an endocrinologist and had your A1c level checked, just to be sure it is low blood sugar?

So for me it was a combination of stress & not eating. I've been eating better & already feel like a new person. I read that low blood sugar causes all the side effects I was feeling. (anxiety, dizziness, worrying & seizures) I was taking Xanax for anxiety & haven't even needed it since I started eating better.

Low blood sugar does cause all sorts of problems, believe me, been there, done that, as I do have Type 1 Diabetes + Epilepsy. The last seizure I had was from low blood sugar because I gave myself insulin and was in a rush, so forgot to eat and then wrecked my car. I went into a CP seizure because my insulin level dropped down to 40. Someone called 911 and I was taken to the ER. Thank god, only my car was totaled. And no, I am no longer driving. So please, make sure it is actually low blood sugar and get in to see an endocrinologist if you haven't yet. It is difficult to manage both.

 

[Vivbama]

I've been checked for diabetes several times & it's been negative. They did a bunch of bloodwork at the ER as well & it all came back fine as well. The only thing that was low was the blood sugar & I assume that was from not eating for 1 1/2 days.

Have you been to an endocrinologist and had your A1c level checked, just to be sure it is low blood sugar?



Low blood sugar does cause all sorts of problems, believe me, been there, done that, as I do have Type 1 Diabetes + Epilepsy. The last seizure I had was from low blood sugar because I gave myself insulin and was in a rush, so forgot to eat and then wrecked my car. I went into a CP seizure because my insulin level dropped down to 40. Someone called 911 and I was taken to the ER. Thank god, only my car was totaled. And no, I am no longer driving. So please, make sure it is actually low blood sugar and get in to see an endocrinologist if you haven't yet. It is difficult to manage both.

 

[joyous]

I was once tested for high blood sugar. But that was years ago. I had a seizure on the street that nearly killed me after the test. I don't have diabetes either but I've found that a sugar/gluton free diet works wonders for me. I use my own adult version of the ketogenic diet. I used to have tonic clonics but no more. I still get peti-mals though hardly at all. CBD and resentment free were needed as well. They are the co-meds I needed as lamictal worked only partially. Now that dosage is lower.

 

[masterjen]

I have biopsy diagnosed Celiac Disease. There has been found a direct link to epilepsy and Celiac--lots of online articles.

I'm convince that more people should get tested even though they may not experience symptoms (it is common to be asymptomatic with celiac--the longer undiagnosed the worse the neuro and intestinal damage). I had VERY FEW spots on my brain that were even remotely abnormal, so my nero labeled it idiopathic.

But there is also a lot of research regarding Celiac and other neurological disorders. It's a simple blood test to find out if your gluten antibodies are high. Couldn't hurt for anyone with epilepsy or other immune/autoimmune diseases to get checked!

I also have biopsy-diagnosed celiac disease, both diagnosed about 4 years ago. I have a couple of areas in my brain as well that are "notable but not grossly abnormal", but not the so-called characteristic brain lesions/calcifications associated with celiac disease. And because eating gluten free did not improve the seizures or other neurological signs, the conclusion in my case as well was that the celiac and seizures are not connected. I do have other neurological issues that can be seen in celiac, such as peripheral neuropathy, ataxia and reduced/absent reflexes, but because of other long-standing and congenital issues the doctors are not convinced of celiac-related connections.

I agree with you that children and adults with neurological findings (in addition to seizures) should be tested for celiac. Eating gluten free may not necessarily stop the seizures (but it can), but it very well may prevent or even reverse other neurological damage. Did adopting a gluten free diet improve your seizures or any other non-GI symptoms?

 

[Dline]

I also have biopsy-diagnosed celiac disease, both diagnosed about 4 years ago. I have a couple of areas in my brain as well that are "notable but not grossly abnormal", but not the so-called characteristic brain lesions/calcifications associated with celiac disease. And because eating gluten free did not improve the seizures or other neurological signs, the conclusion in my case as well was that the celiac and seizures are not connected. I do have other neurological issues that can be seen in celiac, such as peripheral neuropathy, ataxia and reduced/absent reflexes, but because of other long-standing and congenital issues the doctors are not convinced of celiac-related connections.

I agree with you that children and adults with neurological findings (in addition to seizures) should be tested for celiac. Eating gluten free may not necessarily stop the seizures (but it can), but it very well may prevent or even reverse other neurological damage. Did adopting a gluten free diet improve your seizures or any other non-GI symptoms?

Interesting that docs don't think they are related! I've mentioned it my neuro and he seemed a bit clueless about the whole thing. Unfortunately it took so long to diagnose my Celiac (found out went I was 35), the GF diet hasn't improved the seizures or my other symptoms either (I too have peripheral neuropathy and ataxia). My tummy is always on and off and never feeling good, too.

There's a lot of info on the internet about the connection but doctors are just not up on it. Also, there are times when calcifications may not show on initial MRIs b/c they may be too faint, but will show up several years later. Thanks Masterjen! Not that I am glad we have these issues, but it is nice to hear there are others out there who understands

 

[masterjen]

Interesting that docs don't think they are related! I've mentioned it my neuro and he seemed a bit clueless about the whole thing. Unfortunately it took so long to diagnose my Celiac (found out went I was 35), the GF diet hasn't improved the seizures or my other symptoms either (I too have peripheral neuropathy and ataxia). My tummy is always on and off and never feeling good, too.

There's a lot of info on the internet about the connection but doctors are just not up on it. Also, there are times when calcifications may not show on initial MRIs b/c they may be too faint, but will show up several years later. Thanks Masterjen! Not that I am glad we have these issues, but it is nice to hear there are others out there who understands

I agree that it is nice to know there are others who share these conditions and can understand I am also amazed that with all the literature and research on the internet that doctors can say there is no association between celiac and seizures.
That's interesting what you say about some things not showing up on an MRI because they are too faint, and may show up later on. Makes sense, but not something I ever thought of.
I also continue to have up and down GI issues despite being religiously gluten free. I don't know if this has ever been a factor in my case, but what I recently found out from my local grocery store is that MEAT may be a risk: you know how you see pre-breaded cutlets or chicken or fish, for example, or pre-merinated meats? We cannot eat those of course, but sometimes either the supplier of the meat/fish/poultry to the store or even the store's own behind-counter meat department do not take adequate measures to ensure absence of cross contamination with potential allergens. I don't know how much difference it will make, but I make a point now of washing all meats etc.

 

[Cint]

I've been checked for diabetes several times & it's been negative. They did a bunch of bloodwork at the ER as well & it all came back fine as well. The only thing that was low was the blood sugar & I assume that was from not eating for 1 1/2 days.

I think just about anyone can experience low blood sugar from not eating for a day and a half. I know my daughter experiences it if she skips her breakfast or lunch. She says she feels like she is going to pass out if she doesn't get something to eat "now". I feel the same if my glucose falls below 60, whereas most people without diabetes start feeling that way if their glucose falls below 70. It gets that way after a while for folks with diabetes, we don't feel it as quickly as "normal". I would definitely pass out/have a seizure if I didn't eat for a day.

http://www.drugs.com/cg/non-diabetic-hypoglycemia.html

What is non-diabetic hypoglycemia?

Non-diabetic hypoglycemia is a condition that causes the sugar (glucose) in your blood to drop too low. This can happen in people who do not have diabetes. The 2 types of non-diabetic hypoglycemia are fasting hypoglycemia and reactive hypoglycemia. Fasting hypoglycemia often happens after the person goes without food for 8 hours or longer. Reactive hypoglycemia usually happens about 2 to 4 hours after a meal. When your blood sugar level is low, your muscles and brain cells do not have enough energy to work well.

What causes non-diabetic hypoglycemia?

~Fasting hypoglycemia:

~Certain medicines or herbal supplements such as fenugreek, ginseng, or cinnamon

~Alcohol

~Exercise

~Medical conditions such as liver disease, hypothyroidism, and tumors

~Eating disorders or malnutrition

~Stomach surgery or hemodialysis

~Reactive hypoglycemia: The causes of reactive hypoglycemia may be unknown.

~Hyperinsulinism

~Meals high in refined carbohydrates such as white bread or foods high in sugar

~Prediabetes

~Any surgery of the digestive system

What are the signs and symptoms of non-diabetic hypoglycemia?

~Blurred vision or changes in vision

~Dizziness, lightheadedness, or shakiness

~Fatigue and weakness

~Fast or pounding heartbeat

~Sweating more than usual

~Headache

~Nausea or hunger

~Anxiety, Irritability, or confusion

How is non-diabetic hypoglycemia diagnosed?

Blood tests are done to measure your blood sugar levels. These tests may also be done to find the cause of your hypoglycemia.

Fasting tests may be done. You may have an overnight fasting test or a 72-hour fasting test. After you have fasted overnight, your blood sugar levels will be tested 2 times. For a 72-hour fasting test, you will not be given food for a period of up to 72 hours. During this time, caregivers will check to see if your blood sugar drops to a certain level.

An oral glucose tolerance test may be done. After you have fasted for 8 hours, your blood sugar level is tested. You are then given a glucose drink. Your blood sugar level is checked after 1 hour and again after 2 hours. Caregivers look at how much your blood sugar level increases from the first check.

 

[Belinda5000]

I can thank the doc that delivered me for the cause of my seizures.I was delivered by forceps and I took 72 hrs to come into this world.
My seizures weren't diagnosed until I was 2 but I had them long before then.

 

[Penny]

My epilepsy was caused by a stroke 2 years ago. I have had MRI's, Cat scans, EEG's lots of blood work up. I have a nice size lesion on my brain they say and Temporal lobe epilepsy. I have simple and complex partial epilepsy and generalized sizures. This last month I had postical psychosis because of so many seizures in a row and their length. I was in the hospital 6 days. Everything keeps getting worse and my stress is going up which doesn't help! I see the epiloligist this Monday. Looking forward to results of hospital testing.

 

[Penny]

I can thank the doc that delivered me for the cause of my seizures.I was delivered by forceps and I took 72 hrs to come into this world.
My seizures weren't diagnosed until I was 2 but I had them long before then.

Wow! Reading your story makes me thankful my daughter has not experienced siezures or has epilepsy. It took 56 hours with her and forceps, which she has hook bruises from in all baby pictures. The dr. said he didn't realize how big she would be or he would have done a C-section (9lbs. 10ounces).

 

[Vivbama]

Cint, I had all the signs & symptoms except the sweating.