new person looking for help

[tlemaybe]

Hi,
I'm new to this forum and I'd like to thank the creators for providing this site.
I've had partial seizures now for 18 years, about 2-4 closely spaced episodes occurring every 3-6months or so. I've had over 100 seizures, I'm certain.

I have never lost consciousness and so haven't felt the need to remove these strange things from my life. For those wondering, I can at least perform functions while the event occurs or remove myself from the situation (i.e, pull over to the side of the road, or continue driving if need be). Sometimes it feels like I could black-out, but I never do. In these instances I can either fight it with all my strength (which has been very successful), or if I'm in bed I will allow it run full strength, at which my vision will darken to extreme dizziness and faintness, near black, but I remain fully aware until it is over.

My seizures produce a very strange phenomenon similar to a severe psychedellic hallucination. I have had a great number and have had many opportunities to understand what exactly happens. Unfortunately, what I have learned from them is not pleasant, and probably too scary for many people to hear or read.

They have changed me forever. If I never have another one, it will be impossible for me to unlearn what they have shown me. I need a place to discuss this in detail.
I know that thoughts of suicide and extreme depression are not for this forum.
SOoooo....

Sorry to take so long but my real question is: Does anyone know a good forum or phone number where I can discuss these things in uncensored detail?

I tried to go to a psychiatrist but she was focused on medication. What I really need is someone with a strong spirit to talk to, someone who can hear the most depressing things ever and not be affected by it. I told her I needed to talk to someone, and she seemed to imply talking isn't as good as drugs. Probably an HMO insurance thing... She didn't return my call for a follow up appointment. too busy I'm sure. But I felt her spirit wasn't strong enough to deal either.

I also have another friend who is becoming a mental health therapist. She assured me I am fine, though she never sat with me. True, I try my damnest not to let this thing affect my life in any way. I must be a good actor! But I swear these things have me totally messed up in a negative way.

I am living mostly in the closet with this issue, and I'd love to vent.

thanks!

[RobinN]

Welcome tiemaybe
My daughter has seen a therapist for the past three years. It has been extrememly helpful. She has suggested only one time that perhaps a medication would be helpful, but I have resisted and told her that I want to correct this with nutritional choices.
I have read that even schizophrenia has been linked to poor nutrition. Something to consider.

I would suggest that you keep searching for someone to talk to. I am sure if you do you will eventually find someone qualified that you are comfortable with. Psychiatrists find drugs to fit the situation, and Psychologists take time to talk the problem out. That has been my experience.

[skillefer]

Welcome temporal lobe epilepsy. My suggestion is that you keep searching. Also, please understand that if you are having seizures, and they are left untreated, (by untreated I mean either by using meds or alternative therapies) then you run a very high risk of having your episodes get worse over time and possibly develop into more severe episodes known as grand mal/tonic clonic...which if left untreated can be fatal. I strongly advise that you find not only someone to talk to , but that you also search for a physician or practitional of alternative therapy that can help you get the spells you are experiencing under control.

[Nakamova]

Even if your friend thinks you're fine, it's your call: If you feel you need help, then get help! Definitely look for a therapist -- call a local suicide hotline if you need a reference right away. There is a statistical correlation between epilepsy and depression (though not enough data to show if one causes the other), so you may find that treatment for either or both makes a huge difference in your quality of life. I agree with what Skillefer says above about the risks of untreated epilepsy -- it's worth trying to get help from a physician or healer to minimize those risks.

Good luck,
Nakamova

[tlemaybe]

Thank you all for your help.
I guess I'll start looking this week for a therapist.

There is a statistical correlation between epilepsy and depression (though not enough data to show if one causes the other)

Thanks for sharing..
wow, I'm surprised they haven't nailed this down yet.
In my case, it is FOR CERTAIN that epilepsy causes depression, at least short term (12-72 hours). I'll be going about life, pretty optimistically, and then I'm hit out of the blue with these brain surges.
These seizures have GOT to be nuking my serotonin levels, there's just no way someone can hallucinate like that without a seratonin zap! And if that's not enough... they are accompanied by forced thoughts of a pre-programmed universe made up of extreme downers

I don't listen to the deja-vu... its not real. but geez! lol...
Just what I need in the middle of my work day.


but I am feeling better today. I had one on the 21st that had me feeling down and unmotivated for a couple days.

(BTW- love the smiley choices on this site!)

[Bernard]

Hi tlemaybe, welcome to the forum.

A couple points:

- Some phone numbers were posted here.

- If you are taking anti-epileptic drugs, talk to your neurologist about the seriousness/severity of your depression/destructive thoughts. It could be a side effect of your medications.

- Temporal lobe seizures are associated with many "paranormal" type experiences/hallucinations. I believe that people filter/interpret them within whatever filters/framework the brain has established. For some, this means religious experiences, for others, conversations with the dead or other similar experiences. I also believe that focusing too much on the content of your temporal lobe epilepsy experience versus getting the seizures under control is a mis-application of your time and effort.

- FYI - Human Herpesvirus-6B with Mesial Temporal Lobe Epilepsy