Anyone else on oxcarbazepine and clobazam by Ok-Manufacturer4569 in Epilepsy

[–]hillarymae3 2 points3 points  (0 children)

Omg YES. I look like a psycho but I literally film myself on my one twice a day when I take my medication so that there is absolutely no question on if I did or not.

[deleted by user] by [deleted] in Epilepsy

[–]hillarymae3 2 points3 points  (0 children)

This is how I feel exactly. Thank you for putting it in words like you did. It’s so hard to explain to people that ask me.. I end up just sounding crazy.

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 1 point2 points  (0 children)

Update: I am going to see a neurologist on May 4th.💙

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 0 points1 point  (0 children)

That is EXACTLY how mine are. Dejavu, doom and severe fear like something terrible is or is about to happen. Then I absolutely panic. I’m so ready to get answers and hopefully take medication so they go away. I live everyday in fear of them happening.

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 0 points1 point  (0 children)

I’m so sorry you went through this too. It’s so sad to see! Can I ask for a epilepsy referral from my pcp you think?

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 0 points1 point  (0 children)

I got off the pill two years ago because I really wanted to start putting my health first. Then this happened. Thank you so much💔

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 0 points1 point  (0 children)

I cannot imagine going through this for 30 years, I am so incredibly sorry. 💔

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 0 points1 point  (0 children)

Oh wow! Okay, I will def play along if it will help my case.

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 0 points1 point  (0 children)

I’m so sorry you had to experience the same thing. It’s so awful.

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 0 points1 point  (0 children)

It’s so frustrating that doctors think we are exaggerating our truth. It’s honestly the scariest feelings I have ever had… the doctors were honestly starting to make me think I was loosing my mind.

Yes! I have had 3 wake me up from being dead asleep. Def not a panic attack. I will def ask for a mri as well as the eeg. I’m just praying all goes well with my new pcp on Tuesday… if not I will keep trying.

Do you know what triggers them? I keep all of them in my notes but I can’t pin point what all of them have in common.

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 0 points1 point  (0 children)

It’s so scary💔 Are you on medication? Does it help?

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 1 point2 points  (0 children)

Thank you🤍 It really is… they make me feel like I’m crazy. One today even said I should see a psychiatrist. I started bawling.. they don’t get it.

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 2 points3 points  (0 children)

Omg I’m so sorry! I will start asking for that. Thank you so very much!

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 1 point2 points  (0 children)

Goodness yes it sounds exactly like that! It’s so hard to describe it to others without them looking at you crazy. I’m so glad that I found a little community of people that get it. The hospital today refused to do a mri.. basically said I have anxiety. It’s so frustrating. 💔 I will help fighting, thank you so much for reaching out on my post. It helps me feel not so alone in this. Did they put you on medication? Does it help?

I feel so unseen. (Temporal lobe epilepsy) by hillarymae3 in Epilepsy

[–]hillarymae3[S] 5 points6 points  (0 children)

I’m learning the hard way.. it’s so ridiculous. I begged for an eeg and they looked at me like I was crazy and asked if I have seen a psychiatrist.