New to Everything

[MMRocks]

Always felt that I was different somehow. Been pestering doctors since I was early 20's to find out what was going on with me; they all dismissed me.

Now I'm 41, I've had so many dozens of medical tests in past decade and they've all come back "you're good, totally healthy" and they never understood why I would be upset.

Blog post I stumbled across 3 weeks ago described temporal lobe partial seizures, and holy cow! Yep, me. Doctor agrees. Awaiting insurance green light to see neurologist, should be any day.

So I'm still learning everything, still processing. Lots of emotions.

Oh, and I was on Welbutrin for depression, so I've been coming off that for the past 3 weeks (tapered down), last dose was 4 days ago, so I'm seizing every 20 minutes last 48 hours.

Love to talk more when I can articulate.

 

[SlimBlue]

Hi, welcome to CWE

It certainly sounds like you been having a rough time of it. Hopefully here you'll not only find great info and advice, but support and empathy from people who understand what it's like.

 

[Nakamova]

MMRocks, welcome!

It's amazing that you had to wait 20 years for a diagnosis -- better late, than never, eh? -- but unfortunately not uncommon with partial seizures. I hope the neuro is able to help you get some relief quickly.

 

[MMRocks]

20 years

Thank you SlimBlue

Nakamova I had every test known to man Except brain scans! LOL

I'm a writer, and always felt I never had anything to write about prior to a year ago- now I have so much material I don't have enough hours in the day to write. I think I'm not only going to write about 'hidden' seizure signs, but also how to be your own Advocate, or how to bring an Advocate with you to the doctor. I didn't know how to speak for myself 20 years ago, didn't know how to politely but firmly insist on being heard and get the tests I needed.

No regrets- my life wouldn't be what it is if I'd been put on a different path 2 decades back. Just a lot of epiphanies, "oh *that's* what that was!" moments piling up on each other.

Rough times yes- and rough times are sandpaper, they polish us so we can shine.

 

[SlimBlue]

I think there are some lessons for us all there

 

[MMRocks]

Okay I get why I can't post image yet as I have not proven I am not a troll.

BUT why can't I post in the music forum?

 

[Nakamova]

That's odd -- you should be able to post in the Music Forum. If you are trying to post a link though, you may need to wait until you hit the required number of posts.

 

[MMRocks]

@Nakamova
Nope just tried again, click new thread and it gives me the "noob" message. Never even got to content to add links.

 

[MAB]

Always felt that I was different somehow. Been pestering doctors since I was early 20's to find out what was going on with me; they all dismissed me.

Now I'm 41, I've had so many dozens of medical tests in past decade and they've all come back "you're good, totally healthy" and they never understood why I would be upset.

Blog post I stumbled across 3 weeks ago described temporal lobe partial seizures, and holy cow! Yep, me. Doctor agrees. Awaiting insurance green light to see neurologist, should be any day.

So I'm still learning everything, still processing. Lots of emotions.

Oh, and I was on Welbutrin for depression, so I've been coming off that for the past 3 weeks (tapered down), last dose was 4 days ago, so I'm seizing every 20 minutes last 48 hours.

Love to talk more when I can articulate.

I hope you get a good neuro that can help you figure things out. So many of us have been through the same thing. They finally started asking me if I was depressed. Well, yeah, I'm sick and you keep saying there is nothing wrong.

Mine should not have taken long to figure out since the symptoms stated the very same day I had a stroke. They just kept saying I was feeling TIA's. TIA's don't last for hours and leave you to exhausted to get out of bed. I kept waiting to stroke out and die. I was terrified for a while and went to the emergency room twice while in the middle of long partial seizures and they just dismissed me as if there was nothing wrong.

 

[MMRocks]

I hope you get a good neuro that can help you figure things out.

Me too! I am awaiting seeing the best neuro in this area, fingers crossed.

I was terrified for a while and went to the emergency room twice while in the middle of long partial seizures and they just dismissed me as if there was nothing wrong.

I've been to the ER a couple times with what I thought was a heart attack; they checked my heart, and when it was fine, they treated me like a hypochondriac. Total dismissal. No one ever went over a basic checklist to diagnose for seizures, ever. One doctor on the ball would have made SUCH a difference.

 

[AlohaBird]

They finally started asking me if I was depressed. Well, yeah, I'm sick and you keep saying there is nothing wrong.

I think this happens way to often to people with E. I'm not depressed as in "clinical" depression that needs yet another medication. I'm sad and pissed off and generally bummed that my brain seems to be malfunctioning and that doctors are pushing pills on me that make me feel even worse sometimes. I think being somewhat "depressed" in those circumstances is a perfectly normal reaction but doctors want to see it as yet another pathology they can medicate.

When I finally found a good neuro and meds that worked, the fog lifted and I was my old self again.

I don't think that anyone with E who is just in the trying to sort things out stages needs yet another chemical added to the neurological mix.

 

[MAB]

Sheesh, I was at my PC doctor for something right after my grandson was DX'ed with severe autism (just a few days before this 2nd birthday) and told her I had a lot of stress and anxiety. When she asked me why I told her about my grandson. Of course my eyes welled up with tears. Right away she wanted to know if I was depressed. She even asked if I was thinking about killing myself. Sure I was depressed which in my mind was a bit normal for the situation, nothing that needed medication. I just needed time to process what we had just been told.