All about Temporal Lobe Epilepsy

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Ouarezki

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I'd like to start this thread to raise awareness about Temporal Lobe Epilepsy, having suffered greatly from it and been misdiagnosed like many many others have and continue to be I feel that we should use this thred to SHARE

- our personal experiences
- articles
- research
- videos and other helpful media
- any relevant theories or ideas

This thread also exists in the "library"

Let's keep things short and simple to read or else just share links , you can find my personal story on this forum but it is WAAAY to long to post on this thread :)
 
Good thread.in my case I had something as a child and always getting headaches.then I got boinking on head was pregnant at the time.long very harrowing story short had baby felt awful then these aura kicked in of intense terror I knew it was physical something very wrong I would be putting shoe on then few seconds later no find shoe it was behind wardrobe but as far as I was concerned I had not moved this got worse find blood bruise everywhere.they reckoned I had baby psychotic disease so was put on strong anti depressants things got worse so the upped the agai and again I even had sz in front of Doctor but they slung me in nut house with baby after two days I thought sod This discharging myself I did BUT that When nightmare started I was told if I did not go back and have etc take baby away.now I knew not depressed I was pretty pissed off though.so me and baby got the hell out went live with friend,my husband was threatened by social service and cops to find me and baby but he kept quiet said I left him.
I spoke with gp and asked if I would try just one more hospital I did and temporal lobe e was diagnoses.I asked if it should been picked up before and they said yes.Do you think local social service and first hospital get apology no way they buggered off out of my life after causing untold damage to me and family plus those depressing Meds made things worse.Then from there I get mostly what others have.for me it the aura and head ache I dread I believe sz is seconds but get parts of body that sz on its own.i have different aura They the common ones like terror or smell deja vu.been on different Meds but lamactcal the best been on it years.i have times be months and all ok then could have load together stress and infections can make it worse but not all the time.
It is much forgotten member of epilepsy family.
I had weeks I would walk around holding husbands Belt because of fear aura.Even though I know not going to kill me and I aware it going to pass the terror something you never really get use to it.When had first terror aura I panic made it lot worse and I still do even in public
I could elaborate but need write a book.
No two people the same
 
Thanks SEAGUL for sharing your story. I also found out after having a baby but it was looooong overdue and they just thought i was a nutcase! They kept shoving sleep meds and SSRIs and anti anxiety meds down my throat. I even thought i was a nutcase and tried to runaway many times and check myself into the psyche ward beause i had no idea what was going on it was so so scary the feelings were too intense.Even after having a tonic clonic seizure i was still NOT diagnosed for Temporal Lobe Epilepsy.
I continued suffering after a month and half or so and then I did another EEG that still showed epileptic behviour. This time they FINALLY put me under the right meds: FOR EPILEPSY.
 
I was put in nut house and runaway.i even had sz with consultant watching so they put me on massive amounts of amitriptin and the date rape drug.
I wanted to sue but was told I had 80% chance of wining but I had baby and another kid so I could not jepadize the roof over our heads.Worse nightmare of my life.then when I actualy needed social worker for daughter they buggered off had 6month wait but that another story
 
diagnosis is HELL

seagull said:
I was put in nut house and runaway.i even had sz with consultant watching so they put me on massive amounts of amitriptin and the date rape drug.
I wanted to sue but was told I had 80% chance of wining but I had baby and another kid so I could not jepadize the roof over our heads.Worse nightmare of my life.then when I actualy needed social worker for daughter they buggered off had 6month wait but that another story
Click to expand...

WOW, i know that was a sma resumé of your story but i can very much feel your pain. With hormones, the brain sending weird signlas to your emotions and having a baby it is the craziest rolercoaster a women can go through...just thinking back my hold skin cringes and my body freezes from fear.

Altogether doctors threw over 18 molecules at me (sleeping meds, anti-depressants , oodcontrollers...Etc)

From March ( 5 months pregnant) 2016 until October (baby was 3 months) 2016 nothing worked and it was the worst time ever
 
Hi Ouarezki,

Thank you for sharing the article about temporal lobe epilepsy. I've dealt with it for 45 yrs. and a lot of what I read about is so true with what I've experienced over the yrs.
The one thing that they didn't mention that I feel others should know about is the more seizures a person has the better the chance of the seizures spreading across the brain. I started out with right temporal lobe epilepsy and my neuro could never control them, over the yrs. I had so many seizures that damage spread from the right temporal lobe to the frontal lobe, then to the left temporal lobe. By the time I had my last brain surgery my neurosurgeon found bilateral lesions on both sides of my brain.
I also feel it's time for this world to wake up to what epilepsy really is all about. I make it a point and teach students and staff in public school about epilepsy every school yr. Thanks again for sharing this webpage. I wish you only the best of luck and May God Bless You!

Sue
 
Oh Porkette I never knew you had surgery. The damage is rather impressive i'm sorry you had to go through all of that. TLE can be a mess because in can go completely undetected by MRI or oven several EEGs and video EEGs is not realy an option for everyone (pricey, doctors usually never see the point and dissmiss you as 'mental'...etc). You and I and many MANY other reasons is why I wanted to raise awareness...

Is all under control now, how were things straight after surgery? Maybe you can wirte up your story and share it a a link for others?
 
Hi Ouarezki,

According to my Drs. I was a strange case I started out with scar tissue on the right temporal lobe and they did all the necessary testing to make sure it was safe to do the surgery. I was told ahead of time that the surgery would only reduce my seizures but I was all for it since I was having 300 or more seizures a yr. When my surgeon cut into me
he was very surprised because they found damage on the left side of the brain that was to deep in the brain for any test to show. In the long run they removed 75% of my right temporal lobe and all of my right hippocampus which reduced the seizures a lot. Last yr. I had only 65 seizures which is the lowest amount of seizures I've had since 1994 when I had surgery done. I think what really helped was the cbd oil that I started back in the end of April or beginning of May last yr. Now the only time I have seizures is when the hormones change each month for 1-2 days or if I'm sick. I've also noticed that I'm having more seizures in the fall and winter compared to the spring and summer. My Dr. calls them "seasonal seizures" and the reason why they happen is because there's less serotonin in the fall and winter compared to the spring and summer. Here's wishing you well and May God Bless You!

Sue
 
These are links to threads started here on this forum that helped me and could definatly relate to YOU ;)

IF YOU READ THESE DROP A NOTE ABOUT THEM OR MAYBE LINK SOMETHING RELATED :) THANKS AND GOOD LUCK

1) http://www.coping-with-epilepsy.com...lepsy-gives-you-psychological-symptoms-26844/

2) http://www.coping-with-epilepsy.com/forums/f20/temporal-lobe-epilepsy-22978/

3) http://www.coping-with-epilepsy.com/forums/f20/temporal-lobe-epilepsy-struggling-22762/

4) http://www.coping-with-epilepsy.com/forums/f34/anyone-else-experience-psychotic-symptoms-17558/

1: Is a thread started by me! It's title suggests " Temporal lobe, when your epilepsy gives you psychological symptoms" and I try to reachout to thers who suffer from pschological symptoms during a pseudo seizure. I also talk about my postictal and preictal phases of the seizures as well

2: The user has an odd case of deja vu that is very common amongst suffers of TLE, the comments are worth a read too, they are all from users who know a thing or two about epilepsy :D

3: Like a lot of us who have suffered from mental dissorders we now find ourselves here as well....but is that a coincidence?? This user was misdiagnosed of PTSD, depression and anxiety...ring a bell? Thing is she suffered greatly and now is suffering the consequences!!

4: When you are suffering from epilepsy you MUST avoid overstimulation because that could lead to a GRAND mal or a fit and whole lot of complications , short or long term. The user here talks about his postical phase and how much he is suffering from his psyhotic fits
 
my karma was bad at time it back in sinqu now only forgot how spell,but not sure can blame e for that
 
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