Suicidal ideation and seizures.
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.
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While I have been appropriately sad over sad events, I have never been depressed. I am a bit high strung, as my mother would say, but I’m not anxious. I’m a mover. I wake up with a smile (always have) and off I go!
When my first doctor walked into my hospital room and said: “you have epilepsy” after a year of her treating me like an attention-seeking borderline, I found another neurologist. He retired a year ago and they switched me over to a PA. The PA is worse than the original Dr. She dismisses everything. Hopefully Mayo will see me and I can get a fresh perspective.
I thought I replied to your message. No?
I do not think so @amkect64
Hi @amkect64. What do you mean weird visions. Could you perhaps give more information on that so as to be able to understand and help?
Hi Leonard (@jakedduck1)
You wrote, "It is unbelievable how many doctors diagnose a seizure as stress, anxiety or depression". Unfortunately, it is true, I have experienced that myself in 2018, when my epilepsy evolved and my seizures increased. First, I have been diagnosed with anxiety/depression by two psychiatrists. At that time, I was already having sleeping problems for about 5 months. How can one be well with sleeping problems? I was prescribed with antidepressants, which did no good. One of those antidepressants even triggered a strong seizure. After being diagnosed with epilepsy in 2019, I have learned that some antidepressants may affect people with epilepsy and therefore, should be carefully prescribed.
As to seizure diary, curious to know which one you use, Leonard? I am currently using Epilepsy Journal on my mobile and it is very helpful.
You are obviously highly intelligent and know more than many doctors. Keep records. Keep telling your story. Something to consider- furniture finishing chemicals as a cause of seizures. I've seen petroleum products cause seizures in my own family.
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!
I no longer use a seizure journal because of the infrequency of seizures.
Back when I did I made my own because if they were available I never saw one.
My seizures never seemed to show patterns or triggers or any plausible reason why they were continuing. I still continued with them anyway but eventually stopped using them since they weren't of any treatment benefit. After the seizures eased 10 years ago, I believe I threw them out.
Yes @jakedfuck1 and @ amkect64 seizure diaries can be very helpful. In fact one time when I went to see my epileptologist she said I should bring my seizure diary with me every time I see her. Naughty girl I don't do that.