Temporal lobe epilepsy (family first)

amother

Chocolate

Sun, Jul 05 2020, 4:05 pm

amother [ Blonde ] wrote:

I don’t get the family first magazine and I never heard of this form of epilepsy. I googled it out of curiosity and now I wonder if my husband has something similar!

Anxiety runs in his family. A couple years ago he mentioned to me that he sometimes has these random “panic attacks” (his words) that last 30 seconds or so. He feel unexplainable panic and like his stomach drops away. It doesn’t occur frequently (maybe a couple times a year?) and he gets back to normal soon after. He also randomly one time had one where he was shaking uncontrollably and had a tightness in his chest . I was with him at the time and we called Hatzalah, went to the ER, etc. At the time they couldn’t find a source and said it seemed random. He also has frequent deja vu feelings, which according to google is also a symptom.

What do you think?

he should prob speak to a neurologist (here's the article from the mishpacha)
https://mishpacha.com/the-rising-panic/

amother

Lime

Sun, Jul 05 2020, 5:15 pm

amother [ Sienna ] wrote:

The symptoms are very similar to my husbands petit mal seizures. Comes along with deja vu and stomach turning.

I don’t think that’s what a petit mal/absence seizure is. From what I’ve heard and my own kids experience they don’t know they’ve had a seizure or that anything has happened. What you’re describing sounds more similar to the type of seizure featured in family first this week.

amother

Sienna

Sun, Jul 05 2020, 5:25 pm

amother [ Lime ] wrote:

Petit mal/ absence seizures was the diagnosis he was given after he explained all symptoms he feels and I told the dr what he looks like during an episode (lip smacking, twitching but not convulsing).
But as I mentioned, his tests were clear so it might just be an educated guess rather than 100% conclusive.
I don’t think the exact diagnosis would effect his decision in how to treat it, or not.

amother

Sun, Jul 05 2020, 5:32 pm

amother [ Lime ] wrote:

Yes it does sound like temporal lobe it is very very difficult to describe especially to get it diagnosed.
Petit mal is totally different
It usually starts with aura, sinking feeling then sometimes strange pleasurable feeling (makes no sense I know) and extreme familiarity like you’ve been here before every crack and crevice in the wall is extremely familiar. It’s happened to me in completely strange places and I felt like I was there in the exact position before. That’s deja vu feeling for me...
then it rolls away and I’m exhausted. I usually just need to freeze and let it pass. Takes seconds.
But sleeping at night it’s usually very different - it’s actually obvious I’m having a seizure my eyes are open and I’m shaking. Very few people have seen me have it. I wake up first with a dreadful sinking fearful pleasurable feeling along with déjà vu and fall back asleep. I wake up with horrible headache bitten cheeks and gross feeling for rest of the day because I haven’t slept well.

amother

Sun, Jul 05 2020, 5:38 pm

amother [ OP ] wrote:

It’s also really interesting because every seizure happens you’re completely aware of it. That usually isn’t the case with the other type of seizures

amother

Sienna

Sun, Jul 05 2020, 5:48 pm

amother [ OP ] wrote:

I’m confused. Are you explaining petit mal or temporal lobe? My husband has the bolded. Then feels nauseous or a need to use the bathroom.
While this is happening he makes strange lip smacking motions. That’s my only sign that he’s seizing. He’s fully conscious throughout. Well almost. That’s an argument we sometimes have when it’s regarding driving. He feels he’s fully there while I’m worried that it might not be 100%
At night it’s same. No headaches or cheek pain follow.

amother

Sun, Jul 05 2020, 5:50 pm

amother [ Sienna ] wrote:

I’m describing temporal lobe (as how it is for me)
At night your husband is fully awake or sleeping?

amother

Sun, Jul 05 2020, 6:23 pm

amother [ Sienna ] wrote:

As a side note, the article in FF sounded much more severe than my husbands case.
I believe no two cases are exactly the same and it might be possible that some symptoms overlap. I’m not so worried over the exact diagnosis, what I would love to know is how to cure it completely so that it should be gone forever. Not just cover it up with meds.

when I spoke to neurologist he basically said to me just cannot know if it’ll go away if it’ll return etc. He could not tell me if it would get better or worse. He said I have the options of medicine or surgery... I definitely suggest to do much deeper research to make sure it is temporal lobe and not something else. If it is something else it could have a cure if you got the exact diagnosis.
The only way I got myself admitted was to go to the emergency room of a top notch hospital and say I had a seizure. From there I became a patient and they put me in touch with the best doctor with the help of ECHO.
I had mri and eeg both came up clear....also a sleep deprived test it came up mostly clear too he said he did spot something but very difficult...he said my mri would look just fine to most doctors but from his experience he saw a tiny tiny difference in the sizes of the hippocampi on each side of the brain and it could be very well what’s causing it.
He said he could give me even further deeper tests but if I felt comfortable going on with life as it is that was fine too

amother

Sienna

Sun, Jul 05 2020, 6:28 pm

amother [ OP ] wrote:

It’s interesting you weren’t frightened into taking medication. I’m happy to hear, but I’ll keep searching for answers. I’ll keep you posted if I learn anything new and I’d appreciate if you do the same. Hatzlacha.

amother

Cyan

Mon, Jul 06 2020, 12:26 am

Curious if this sensation sounds familiar to anyone:

I could be in the middle of a gathering, when I start to feel a very strong warm glow in the room, and also a kind of satisfied feeling in the pit of my stomach, and I feel a bit distanced from the setting. It only lasts a short time.

As a child I used to wonder if that was the feeling of being around kedusha, or a malach! (who knows;)

OP does the above strike a bell to the pleasurable feeling you described above?
I never really delved into it much, and it hasn't happened for a while now.

amother

Chocolate

Mon, Jul 06 2020, 12:45 am

amother [ Sienna ] wrote:

Sienna you seem really really hooked on the not taking medication thing. Epilepsy meds are extremely safe- they are used for other things like mood disorders and anti anxiety- keppra is safe during pregnancy and nursing etc,its one of the most tested and safest drugs out there. They do NOT cause strokes. Untreated seizures however, even the little aura ones, can morph into grand mals. ( They can also cause brain damage over time and even death c'vs- called Sudep.) Medication can stop the seizures and often thats enough to rewire the brain and a patient can then be slowly weaned off medication. I feel so so bad that you saw a dr. who scared your husband away from medication, but something really doesn't add up. Maybe you are more natrual minded people and all medications make you a little nervous? TLE often is just a fluke, there's no way to find the root cause, just like there's no way to find the root cause for many other flukes in our bodies- why can't some people tolerate milk the same way as others? The fact that you keep posting about the medication is very odd and may scare people away from taking medication that can be downright lifesaving.

amother

Sienna

Mon, Jul 06 2020, 1:09 am

amother [ Chocolate ] wrote:

You’re actually right. We did have past experience in the family where medication did more harm than good (not related to epilepsy)so after hearing the side effects we weren’t sure which was the lesser of the two evil.
Plus the Dr didn’t mention that this will be a possible temporary solution like you’re saying in the bolded. From our understanding it was supposed to be a lifetime thing.
If you read the entire thread you will notice a few others with epilepsy who chose not to take medication for various reasons. There’s no clear cut answer to what’s right or wrong here.
ETA: I sincerely hope that no one is taking medical advice off this thread for such a serious disorder. Definitely wouldn’t want to take that responsibility. I’m just happy to be able to share my experience and hear what others in the same boat are doing about it.

amother

Sienna

Mon, Jul 06 2020, 1:10 am

amother [ Cyan ] wrote:

My husband never described feeling exactly this way but know that no 2 people experience symptoms the exact same way.

amother

Sienna

Mon, Jul 06 2020, 1:17 am

amother [ OP ] wrote:

Chocolate, how do you explain the bolded coming from a top neurologist?

amother

Sienna

Mon, Jul 06 2020, 1:19 am

amother [ OP ] wrote:

Hey no problem let the discussion continue!
I know exactly what you mean. I had the same thing I met with a really great neurologist the head of epilepsy clinic in a top hospital.he said I could take medications but if I don’t want to that’s fine too. I’ve been having them since I was I was very little so it’s been quite few years now but the MRI last year came up clear bH. I didn’t know what it was growing up but I knew they weren’t panic attacks. People tried telling me it was but I didn’t believe it. Only a year ago I found the name for it and was so excited. It’s been happening rarely now - once or twice per year compared to every single day and every night as a little kid. So I’m not interested in taking medicine for something that doesn’t happen too often now.
But who knows what’ll be in the future.

And here again.
We feel the same here for now, but willing and able to learn more...

amother

Mauve

Mon, Jul 06 2020, 8:08 am

As someone who suffered for years with mostly nocturnal seizures but have experienced numerous focal seizures it’s beyond beyond scary. I never had any aura or warning regarding my focal ones (obviously the grand mal during the night I didn’t have warning but payed the price heavily after each one) but it is beyond scary that one blacks out and time goes on and I’ve continued having a conversation and doing things while it happened and I never had any recollection at all. Each seizure whatever type was scarier and scarier and scary it horrible damage to my body that if I didn’t have surgery probably would have taken my life.