Newbie with possible TLE

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kate705

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Hello All,

I am awaiting an EEG as I have experienced smell hallucinations and strange thinking patterns over the last year. I was referred to a Psychiatrist who said that it was not Psychiatric as such but in his opinion he was very sure it was TLE on the left side. I was sent to a Psych at age 14 as my teachers noticed that I was 'tranced out' a bit in lessons but it was put down to emotional problems as my parents were divorcing at the time. I often get lost when I drive and have not noticed road signs until too late and also stop in mid sentence occasionally when talking. My work colleagues have teased me for years about being 'absent minded' and daydreaming but no matter how hard I concentrated even in meetings I have to ask people to repeat what they have just said.

To cut a long story short, the Psych says I could have had this for decades but due to moving house, my father dying and 2 exams due for my degree (I am a mature student) this has triggered this perhaps.

Since I saw the Psych the symptoms have worsened so much that I am terrified - I cannot work out if this is panic/anxiety or symptoms. I feel such a weak person for getting so scared but I have been dwelling on it all and imagining the worst! I have been getting strange horrible attacks several times a day but these have decreased over the last 2 days thank goodness and I am trying to be positive but just in limbo at the moment. Sometimes I wonder if I am just imagining all of this as it has got so much worse since seeing the Psychiatrist.
Thanks for listening!
 
Hi kate705, welcome to CWE!

You shouldn't feel like a weak person for getting scared! There's something uniquely distressing when our minds start misbehaving.

Have you seen a neurologist abut your symptoms? They do sound like TLE, and seeing a neurologist could help confirm that and give you treatment options (and peace of mind too).

All sorts of the things could be triggering your seizure symptoms, and they can also change depending on levels of stress in your physical, physiological and emotional environment -- things such as the ones you mention, as well as aspects of metabolism, hormones etc -- so it may just be coincidence that your symptoms increased since seeing the Psych. It's also possible that the emotional stress and anxiety surrounding a possible TLE diagnosis are contributing to how you feel.

See if you can get a quick referral to a neurologist. And in the meantime, try and keep a seizure journal -- note the frequency, duration, and kind of symptoms you experience as well as factors such as time of day, and whether you are tired or hungry. The journal will be helpful to your doc for making a diagnosis, and helpful to you in potentially identifying specific triggers.

Do what you can to relax and take care of your general health. There are good tips here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova
 
Thank you for the welcome, is this forum based in the UK or USA? I only ask as I wondered if more people were here at different times of the day. I have not really explored the site properly yet.

Your reply means such a lot, thank you. I am waiting for an appt with a neurologist. I have seen one before 2 years ago for Classical Migraine which I have had since 14. I told him the symptoms of the migraine were not the same and changing - my understanding is that many symptoms are so similar and overlap.

The diary is really good advice and will help, I'm so desperate for an appt that I look every day for a letter that hasn't come!

Best Wishes
 
Hi kate,

I believe the majority of the forum members are in the U.S. (CWE was started by Bernard, who is based in Texas). There are members from all over the world, but it's tough to predict what times of day are the busiest or most popular... I try and check in a few times during my day and the evening before I go to bed (I'm US East Coast time).
 
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