Suicidal ideation and seizures.

Posted by amkect64 @amkect64, Aug 12, 2021

Brief background. I went to see a psychiatrist because I thought my “spells” were a scary sign of mental illness. I would have this sudden sense of deja vu followed by an overwhelming and unpleasant 10-30 second event. The psychiatrist told me she thought I was having seizures. I just about fell out of my chair. What??? The more I read, the more I realized she was right. Unfortunately, the neurologist I went to see disagreed. When I described my “spells” she said my symptoms were not indicative of seizures. It took two years before she walked into my hospital room and said: you have epilepsy. I was diagnosed with temporal lobe epilepsy. One of the medicines I was taking caused me to have double vision. The neurologist sent me to see three different eye doctors before conceding my symptoms might be from my Rx. Naturally, I have lost a lot of faith. Fast forward…I began to have sudden acute suicidal ideation. It comes on with the suddenness of a seizure. It lasts for about 10-30 seconds and it is followed by what I believe is a postictal phase of tearfulness. I’ve made my husband aware, because I am actually afraid that I might act before I can figure this out. We have had several conversations about this. Last night he said: “I dont think you should be left alone.” My response was, a very pouty, “I have to get sandpaper tomorrow.” I’m in the middle of refinishing a chest of drawers and I ran out of sandpaper. My husband was a counselor for years I have a bachelors in nursing. We have enough experience to know this shows I am future oriented. We have enough experience to know what a true suicidal state looks like. I am not suicidal. I believe I am having seizures. I dont believe I have the luxury of waiting for two years or seeing three different psychiatrists before my neurologist explores the possibility. As I said, I believe I am having seizures and I am concerned what a change in presentation could mean.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

lsittll | @lsittll | Aug 18, 2021

In reply to @jakedduck1 "@santosha I no longer use a seizure journal because of the infrequency of seizures. Back when..." + (show)

Jake
It is a nice thing to throw those seizure diaries out. You just want to throw those seizures out!

Laurie

lsittll | @lsittll | Aug 19, 2021

In reply to @jakedduck1 "@santosha I no longer use a seizure journal because of the infrequency of seizures. Back when..." + (show)

Dear Jake:

I apologize for the spelling error, I need to review my spelling, etc. before posting it.

Laurie

Chris Gautier OR Santosha | @santosha | Aug 21, 2021

In reply to @jakedduck1 "@santosha I no longer use a seizure journal because of the infrequency of seizures. Back when..." + (show)

Hi Leonard (@jakedduck1)
I apologize for asking you this question regarding the seizure diary. In another discussion, you have already mentioned that you are seizure-free for already some time 🙂 🙂 🙂 I forgot about that when sending you my last message. My memory is not the same anymore. I am sorry!
Anyway, thanks for sharing your past experience with seizure diary!
I am curious to know what kind of seizure diary other members of our group use. Anything to share?
Kind regards
Santosha

Chris Gautier OR Santosha | @santosha | Aug 21, 2021

In reply to @jennsprung "I was diagnosed 3 years ago with TLE. I have a couple of thoughts on this..." + (show)

@jennsprung

I was diagnosed 3 years ago with TLE. I have a couple of thoughts on this thread. Are you seeing garden variety neuros, or are you seeing an epileptologist? They are the docs that specialize in everything epilepsy. I have found that they are by far more informed of the ins and outs of dealing with epilepsy, especially TLE.
The question was posed as to whether or not some people have visions while having a focals. I’m not sure if I would call what I see a “vision” or a “hallucination” because while it’s happening it is very clear but when it’s over it’s difficult to find words for. It’s more like a memory that feels super real and familiar but at the same time I can’t tell if it’s a real memory or a false one. I have half trained myself to try to breathe through them and attempt to say “it’s happening again but it will be over soon” which works sometimes but not always. In some ways I wish that I didn’t have focal aware. I wish that my consciousness was altered and that I didn’t have to be awake for them because they really are terrifying. Which brings me to my next thought…
Suicidal ideation or thoughts tell me that you absolutely must discuss this with your care provider. Could it be a side effect? Absolutely. Could it be part of a postictal phase? Quite possibly. I don’t believe that you are alone in this. Everyone experiences epilepsy in their own personal way. Because TLE happens in the areas that process thoughts, feelings, emotions and memory, one can experience a literal TON of symptoms. I have run the gamut- I won’t let myself laugh my fool head off now because one time I had a seizure right in the middle of a belly laugh. Once, a seizure made me feel like I was being forced to relive the moment that I died over and over again. Postictal period ALWAYS starts with tears for me. I started crying huge tears after my third big seizure and insisted that my husband get the nurse just so I could tell her I knew the cluster was over because I was crying. I. Had. No. Idea. This. Was. Epilepsy. But it is. And man alive it’s messed up.
I have tried 2 medications so far. The first was awful. I was actually on it as a migraine preventative at the time of my first seizure. I thought the medication was actually causing them. I lost 20lbs, couldn’t eat, and was depressed, although not consciously aware that I was. The second medication is a much better fit, and while I’m not seizure free, I rarely have déjà vu or jamais vu moments anymore.
Keep that diary going, and don’t stop talking. If one doc won’t listen keep looking for the one that will. You got this!

Jump to this post

Hi @jennsprung
Thanks for sharing this experience of your seizures !!! I have very much identified myself with your focal seizure experiences. My experiences are pretty much the same, I also have TLE.
I know, it is difficult to find words to describe them. I first also called them vision and later on my short movies (it felt like a short movie I have already seen many times before). They were all very clear during the seizure, but after it is over I can not remember them. When I was younger, I could tell my mother “the movie is starting” at the start of a seizure. Nowadays, I can not warn through words anymore, but gestures. In the past, some seizures gave me a good sensation, like a feeling of relief. Nowadays, not anymore. In your post, you have mentioned that your seizures are terrifying. Would you mind telling me more about it?
Thanks again!
Santosha

Leonard | @jakedduck1 | Aug 21, 2021

@jennsprung
Hi,
Do either of you wonder? If so could you explain further?
I generally have generalized seizures but I wondered some. Nearly walked into the Grand Canyon & into a highway. I am also interested in hearing how your seizures are frightening. Thank you for asking that question Santosha.
Jake

Leonard | @jakedduck1 | Aug 21, 2021

@isittll
Don’t give it another thought. I’ve been called worse.
I knew it was a typo.
Take care,
Jake

lsittll | @lsittll | Aug 21, 2021

In reply to @santosha "Hi Leonard (@jakedduck1) I apologize for asking you this question regarding the seizure diary. In another..." + (show)

Hi @santosha
You asked about the kind of seizure diary people use. I just use a small calendar, pocket size, and put a / over the date for each seizure I have. In the blank area I write any special note(s) about the seizure.

Best
Laurie

Chris Gautier OR Santosha | @santosha | Aug 24, 2021

In reply to @lsittll "Hi @santosha You asked about the kind of seizure diary people use. I just use a..." + (show)

Hi Laurie, Good Morning @lsittll
Thank you for sharing this with me.
Does anyone use an e-diary of seizures?
Have all a nice day!
Santosha

Chris Gautier OR Santosha | @santosha | Aug 24, 2021

In reply to @jakedduck1 "@jennsprung Hi, Do either of you wonder? If so could you explain further? I generally have..." + (show)

@jakedduck1
Hi Leonard,
I could not understand well your question "Do either of you wonder?" Could you detail it more to me, please?
It is a pleasure to share my experiences with this group!
Thank you!
Santosha

jennsprung | @jennsprung | Aug 25, 2021

In reply to @jakedduck1 "@jennsprung Hi, Do either of you wonder? If so could you explain further? I generally have..." + (show)

I’m sorry I just saw this now- trying to get used to the mayo format! I’ll type something out in a bit! You want to know how I find them frightening?

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