Please help: Good day, I have Temporal... - Epilepsy South Af...

Epilepsy South Africa

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Please help

Rykie profile image
4 Replies

Good day, I have Temporal Lobe epilepsy which has been under control for a long time. I drink (I dont have the jerking etc. But is as if I'm absent but it happens repetitively.250mg Lamicton twice a day and 500mg Keppra twice a day.

Anyway, on the 16th of April I experienced a stressful event when an aeroplane as it was about to take off.

Suddenly I cane to a freeze, couldn't lift my left harm or grip anything. Slurred, wasn't processing anyone had to say. My whole left side went weak.

I thought it was probably just because I was in shock but then all my issues began. I relapsed with my attacks, with all my new symptoms.

My left side if my body was hanging for about a week and people said I looked spaced out. I then decided to go see my GP for an opinion. First thing that came to him was that I had a mild stroke, I'm 31 years old though. He wanted me to see my neurologist utgently.

saw the neurologist and she didn't adjust my meds but gave me Urbanol to drink which helped with the sleep and calm my brain. I told her that it felt like my brain is running away. I still had the same symptoms. She said I should take take the Urbanol for a week and if I'm not better the next week that I had to go see her which I did.

She immedately admitted me and did an MRI which came back normal and a 16hour EEG which also came back normal. Meantime the symptoms still persisted. I was still slurring a little bit but not too bad. Oh, the dr told me that the weakness on my left side if my body was all in my "head" because it wasn't possible as there were no indication on the scan that proves that I should have the weakness. She even said that, how can I feel weak if she could feel that when i lift my right leg that my left leg was trying to work with to assist. I also can't explain it but it was true.

I also suddenly can't write, I know what I want to say but I cannot physically write it.

Then she said I probably had a relapse and upped my Keppra from 500mg to 750mg twice a day. The slurring got worse by the day and I was completely out of it. It felt like I was having attacks one after another. My colleagues noticed all this and told me that I'm actually worse than I was before I was in hospital 3 weeks ago. My memory was terrible, slurring continued and loss of words and confusion became a big problem.

Now I have started stopping in the middle of a sentence and I either stutter or I move my lips but no sound comes out, feels like I hit a brick wall. And this is getting worse and worse and it happens randomly.

I saw the dr yesterday and she says that my symptoms still doesn't add up. I'm getting very frustrated. Everybody around me can see what is going on and she acts as if I'm making it up.

Do you have any advice on this that I can assist with.

By the way, my left side is still feeling weak since the 16th of April.

I would really appreciate any feedback.

Thank you very much.

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Rykie
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4 Replies
Tdevilliers profile image
Tdevilliers

Dear Rykie

I am sorry to hear of your setback. I am not sufficiently skilled in medical advice, but I would advise a second opinion. I would recommend anyone to see Dr Butler - he is an epileptologist and is well known both locally and internationally - many people travel a long way to see him. If you are not based locally, I would advise phoning him and then take it from there. He is sure to have a network, who can help. His contact details are below and I wish you good luck - maybe let us know if you have had success.

Telephone +27 21 797 2099

Address Room 209b Mediclinic Constantiaberg,

Burnham Road,

Plumstead, 7800

Rykie profile image
Rykie in reply to Tdevilliers

Hi there, I just got back from Dr Anderson the other famous dr. I was supposed to only see him in Sep as he is full for the year. Yesterday I get a call from his secretary to come in today. Apparently my other Neurologist called him and told him she is very worried.

After the EEG and all the usual questions he advised that he is very worried about me.

Therefore I have been booked for the 26th of June at Epilepsy Monitoring unit where they will be doing tests for a week.

I feel a lot more positive now as it feels like we are finally on the right course.

Tdevilliers profile image
Tdevilliers

Great - that sounds very positive - I wish you all of the best.

swarna-25 profile image
swarna-25

Why not look for a surgery ?may be is possible I know a best place in japan.In shizouka "National epilepsy center ." Try on internet .

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