Epilepsy for over a year now

[Cpeezy]

Hello everyone

My name is Caitlin, I'm 24 years old, and I've been diagnosed with complex partial epilepsy, migraines, PTSD, psychogenic seizures, depression, migraines and bipolar disorder. Before my brain trauma, I was studying in Grad school and also working as an assistant editor, living with my boyfriend. That has all changed dramatically.

For far too long, I've been avoiding typing about my epilepsy (mostly because it can be so tiring to type!!). Also, it is painful and sad. But I want to learn more about my condition and read about how others deal with everything that comes with Epilepsy. It's more than just the seizure.

I've been struggling with crippling depression and mood swings ever since my Steroid psychosis ended last year. My epilepsy was onset by a very bad reaction to the medication Prednisone (for asthma) in Feb of 2013. The doctors played me for so long, made me feel crazy and even made some TERRIBLE and unforgivable errors in judgement. I have a fear of doctors so intensely I have lied about seizures and certain things just to avoid a hospital visit.

Anyway, SO much happened in 2013 as a result of the brain injury and Epilepsy (including a kidnapping and rape while I was having a seizure). I don't feel like myself anymore. The world seems cruel when it used to seem bright. Before this, I was a writer and avid reader. Now it hurts to write and reading novels is out of the question. My memory is shot. I have good support (Thank GOD) but I still feel alone--painfully so. No one in my life understands the DEPTH and COMPLEXITY of having a sick brain and being stuck in it 24/7.

My mood swings are unbearable. Going from feeling "alright" to suicidal in a matter of minutes. And the fear of doing anything in case I have a seizure. Forgetting things all the time. Feeling tired for no reason or super hyper. Dealing with doctors, disability forms, and just my own brain.

It's so hard, and I just needed to vent it all out there. I look forward to reading others' experiences, gaining knowledge and hope from people like myself.

Thank you :hello:

 

[Cint]

Welcome Cpeezy,

Sorry to hear you had to suffer thru a brain injury and rape. I hope the monster who did it was prosecuted for doing so. And I hope your are seeking counseling because of the trauma that the rape caused and that brain injuries + seizures bring on. Seizures are difficult for anyone on the outside to understand, but we're here to help and we DO understand.

Memory loss is very common in seizures and so is depression. Some of the same meds that are used for seizures are also used for bi-polar disorders. I hope you are seeing an epileptologist and a good neuropsychiatrist who can work together.

My seizures started when I was about your age and I thought my world had ended, too. I went thru a very difficult time finding meds and then went thru a time where I was suicidal, also. But my dr. directed me to an epilepsy clinic where there was a specialist for epilepsy (an epileptologist) and a neuropsychiatrist to treat my depression. He said I was bi-polar. Mood swings do go with E for some, tho. Take it easy for the time being and get the help you need, but never give up.

Here is a good website that explains E and moods:

http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-advanced

http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-advanced/depression

 

[Cpeezy]

Thank you Cint

I have been referred to the UCSF epilepsy center. Your message made me reconsider my idea NOT to go (a fear based decision). I have a phobia of doctors and feeling "kept." The idea of being observed and attached to electrodes is enough to make me have a panic attack. But with that being said, I think it would be good for me to go and just TALK to a professional in the field. All I've talked to is psychiatrists and neurologists (who have all failed miserably in my perspective).

Thank you

 

[Belinda5000]

Hello caitlin and welcome
The meds can depress you ,seizures can .They have both put me in bad depression at times.
The meds can make you tired until you get used to the side effects at least that's what happened with me.
Meds can make you suicidal and be sure to let the doctor know about that.

I was raped in 1992 and if you'd like someone to talk to feel free to contact me.

The perp served 21 yrs in prison.


Belinda

 

[valeriedl]

One thing that I love about this web site is that you find what is happening to you is also happening to others. It makes you not know you aren't the only one that's going through all of these things. There may be just one small thing, in addition to all the others, that you think "There can't be anyone else out there that this is happening to!". But when you post about it you will find out there are so many others that it's also happening to. Most people who do not have the problems that you do just don't understand what it's like.

It took a few years and many tests to figure out what meds and dosages worked for me. I'm still having seizures but they aren't as bad and I'm not having as many. I have a VNS, vagus nerve stimulator. It has helped a ton with my seizures since I've gotten it and I've read that it's also used for depression too.

I've had to go to many drs for other medical conditions I've had before I found the one who worked for me. This was VERY frustrating! So sometimes the first or second may not be the right one. You have to keep looking.

My memory is horrible and I like to read also. I read every night before I go to bed and there have been many times when I pick up the book the next night I don't remember what's going on. I may have to go back a few chapters before I can remember what's happening.

I've always wanted to write a mystery book and have tried a few times but I get so far into it and can't figure out where to go next. When I would write I would keep notes on the characters - their name and all of the things that they've been doing as I write the book. This helps me a lot so I can remember what's going on with the person.

It's good to meet you and feel free to vent on here as much as you want - I know I do!!!!

 

[qtowngirl]

No one in my life understands the DEPTH and COMPLEXITY of having a sick brain and being stuck in it 24/7.

well that's not true anymore welcome to cwe cpeezy.

we share a few things which is always interesting to read.
very sorry to hear you went through a rape, the word sorry just doesn't cut it really. though it wasn't something of such a brutal nature, i was sexually assaulted by a babysitter when i was six.

this brings me to ask - is that event what had them diagnose you with PTSD? or was that diagnosis unrelated? PTSD for someone who has epilepsy is a very touchy subject with me, and here's why-

my brain went weird on me when i was 15 (no epilepsy on either side of family so it wasn't even a thought in the medical mind). within a month i was diagnosed with PTSD due to that event with the babysitter nine years prior. psychiatrist said my brain protectively hid the memory, then going into the hormones a girl experiences at 15, the memories took control. was on meds instantly and it was my new life. at the time it all made sense of PTSD.

9.5 years later i woke up at 4am with a bedroom full of police. my poor boyfriend was beside me saying he had to call 911 as i had just had a seizure. chalked up at the ER to a bad partying wknd, and waved a finger at me to be more careful. 2.5 months later i woke up with a smashed tongue again, this time in my dad's arms on my office floor. INSTANT epilepsy diagnosis.
a few years later another grand mal made me drive into a ditch, but this time was preceeded by a PTSD episode. or not-
turned out i never had PTSD, and all specialists since have stated that i had uncontrolled szs for almost 10 years b/c the psychiatrist didn't go so far as ordering an MRI. that day of realization destroyed me, and changed my entire future.

as an avid researcher i've learned how common the misdiagnosis of PTSD for epilepsy and vice versa take place, esp. b/c symptoms of a simple partial seizure and PTSD episodes can be very similar.

you're very right, the depth and complexity of having a sick brain and being stuck in it are too impossible to describe most of the time. hence why we all joined the best site ever. i hope you find what you need

 

[Cpeezy]

Qtowngirl- Thank you for your open and kind reply To answer your question, YES I was diagnosed with PTSD before I even actually had it (it was kind of ironic in a dark way). I'm sorry to hear about what happened to you as a child and your misdiagnoses. I had an abusive boyfriend when I was in my teens (he actually had a psychotic episode where he tried to kill me)... and in my vulnerable state, after several seizures, I told my psychiatrist my whole life history, including this event. He then took this event, indeed it was traumatizing, and pinned it on an "underlying issue of PTSD, triggered by a drug induced psychosis, causing bi-polar disorder, depression, and tics PNES, etc."

Ironically, after all of the hospital visits I became actually deathly afraid of doctors and had nightmares and panic attacks where I would think I was in a hospital. After the rape last Sept. (which I barely remember) I had episodes of PTSD where I would remember tiny parts of it. Belinda- Unfortunately the guy is NOT in jail because I was in such an altered state from the terrible seizure, it was just my word against his (and at that point the doctors hadn't diagnosed me with partial complex seizures). He was a complete stranger and I barely remember was he even looked like. It happened in South central LA so the lawyer literally said he couldn't help me because I wasn't "Beaten or cut up." After going through medical system and court system I felt like the world was in chaos and nothing made sense.

Thank you everyone for welcoming me It feels so good to hear stories that I can SO relate to. It is a relief.

 

[Cpeezy]

Qtowngirl-

I keep wondering about a lawsuit against Kaiser for the reason of diagnosing me with PTSD before I even went through therapy. I went almost 9 mo. undiagnosed with Epilepsy because of Kaiser. Did you pursue any justice from medical system? The thought of dealing with more lawyers terrifies me.

 

[qtowngirl]

onder: i'm not sure how that works in the states. it wouldn't have been something here you could approach legally. as simple as being told that 'doctors are human too, they make mistakes sometimes.'
couldn't even get a comment like that out of him tho as he refused to see me when i was diagnosed properly. my doctor requested a one-appt. sit down to go over my file from age 15, and he said no, on the basis that he only works with minors. i was furious and my doc wasn't too impressed either, but at the end of the day it proved that he knew he fucked up and couldn't face me.

also why i couldn't go anywhere with it is that is was almost 10 years later. when we finally realized it was never PTSD my neuro gave me bad attitude that i had never told him about these 'episodes.' i said, ''uhhh, why would i? this was a completely different diagnosis that has nothing to do with grand mal seizures, it's from an assault when i was six.' (hence i was very new to epilepsy and didn't know all about stress-related seizures).
when i found out the psychiatrist wouldn't see me i beaked off to my neuro how unprofessional he was etc. he said, 'do not speak like that, this man is a colleague of mine!!!' onder: how often is it not really about your patients?! hmmmm?

imo i wouldn't bother seeking legal help, esp. if it 'terrifies' you. not worth it. however, if it would give you a clear answer as to whether or not they would help you, could you sit through a consult?