Someone like me

[LostInSpace]

Isnt there anyone like me? I was diagnosed with TLE 4 years ago. I have what I call "head rushes", rising adominal sensation, Alice in wonderland, euphoria, devastation and hallucination in the same split second, Forgetfulness. I'm 38. I would feel much better if there were someone else I could relate to, to remind me that I am not crazy. I can't tell my family about all of this. These are all very personal experiences. I think this has been the worst part of this entire experience, not having someone to relate with.

 

[Frink]

Hi LostInSpace,
I have had TLE for 38+ years, diagnosed 11+ years ago. I would imagine many people with TLE can relate, at least in part, to your experience.

I get an abdominal sensation/nausea/epigastric rising, a strong sense of alarm, intense deja vu, smell/taste, swallowing, I can see images like pictures or a dreamy "video", I can hear music, I get boiling hot then freezing cold, AIW syndrome, weird memory problems- some things I remember (like things I read) and some things I forget (like day to day life experience) etc.

Trying to explain this stuff to someone who has never had a seizure can be very awkward.

 

[Porkette]

Hi LostInSpace,

I've had temporal lobe epilepsy for 44 yrs. and there have been times where I have hallucinations where I will see colors flashing back and forth in my eyes and hear one
word repeated over and over again. This all part of the neurons firing up triggering
the seizure.

I found seeing an Epileptologist the best thing I ever did this Dr. was able to explain why all of this happened and I was able to have surgery to reduce my seizures 50% or more. As far as the short term memory mine isn't very good and a lot of that is do to the surgery not to mention all the seizure meds I've taken over the yrs.my Dr.old me to do a lot of math, word search puzzles and brain teasers to better my memory and it has worked a little. He also told me to stay off the cell phone because they have proven that if a person uses their cell phone every day for 30 min. or longer it will shrink and harden the hippocampus of the brain causing short term memory loss. I see it in students I work with in public school. Here's wishing you the best of luck and May God Bless You!

Sue

 

[LostInSpace]

Hi Frink,

Yes, Deja Vu, and finger movements when I freeze. As I said, the worst part is being able to share experiences with anyone. The day I was diagnosed, my world came crashing down. It made no sense to me. After all, when I was 24, I went to my family doc who told me I didn't have a seizure, because I didn't wet myself. The buzzing I felt that morning was as I described was "ungodly". My doctor told me it was a dream. I couldn't sleep alone for weeks after that morning. It still made no sense at all. And, being the bonehead I am sometimes, accepted that.

The neurologist would just ask me what experiences I had, and I told her, "none". It was not until I started Keppra that I realized "holy cow, life is different ". My "getting glasses for the first time feeling ". I realized the episodes where I thought I had ADD, were actually blackouts I was experiencing. Deja Vu I thought was normal, everyone gets that. Come to find out, not several times a day, as it had worked up to that.

I have thought about joining a local support group, but since I only experience simple partials now, I feel that I'm not sure I would be able to relate to others. I don't think I would fit in. I do not know anyone with epilepsy. I am a very outgoing person who likes to find humor in anything, but not being able to share my experiences is rough. I have told people that I have epilepsy, since I did not drive for 9 months. I figured what's worse, people knowing I have epilepsy, or thinking I got a DUI? People ask me what seizures feel like, and I tell them Deja Vus, a lot. This is the only thing I feel comfortable sharing with them, as they can usually relate. I don't tell them about the nightmares, the hallucinations, the nausea, AIW. Even so, I do feel myself pulling away from my coworkers. I'm not sure if it is my paranoia, or if they really find me crazy. I've been in my career for 14 years now, these people were my family.

Can you relate to any of this?

 

[gnault]

Someone like me / support group

"I have thought about joining a local support group, but since I only experience simple partials now, I feel that I'm not sure I would be able to relate to others. I don't think I would fit in. I do not know anyone with epilepsy."

I would encourage you to give a local support group a try. I live in Nova Scotia and have our main Epilepsy association office in the city that I live in. I have gone to one support group meeting. It was a small group but it almost felt very releasing and a good place to share experiences. I found it to be very similar to the CWE except you see people in person.

You don't think you have much to add but somebody in that support group could really benefit either from the questions that you ask or the experiences that you have gone through. I don't think that I shared much my one and only time to the support group much but they asked me questions. I went without my wife, maybe a mistake, but it allowed me to open up a bit and also internally accept a few things. I still have a few things that I have never shared with people in person. I believe I may have shared a few things here that nobody else knows.

Take a chance and head out to your local support group if you have one close by.

Gilles

 

[Frink]

I started having seizure activity after a head injury in 1978, got misdiagnosed in 1995 with panic attacks and finally diagnosed with TLE in 2005, so by the time I was properly diagnosed I was actually very relieved to find out all the different weird stuff I was experiencing was all coming from 1 problem.

Since all I knew of epilepsy was the tonic clonic seizure I had no reason to think what I was experiencing was epilepsy. After the head injury I, and my family, were assured by multiple doctors that I would be fine and there would be no long lasting side effects.

I have always been more of a solitary person and feel uncomfortable around more than just a couple people so joining a group, even a support group, would be well outside my comfort zone.

My favorite job was being a truck driver, just me and my truck.

I don't have a problem telling people I have epilepsy but I keep it on more of a need to know basis.

 

[CQ:)]

Hi Lost in Space

I was diagnosed with epilepsy as a baby as I had my 1st tonic clonic at 9 months. But I was seizure free from the age of 3 until the seizures returned in May 2002 when I was 24. When I started having seizures again most of my seizure were simple / complex partials with the odd tonic clonics. Not long after the seizures returned MRIs showed scarring on my left temporal lobe & I was diagnosed with left temporal lobe epilepsy.

I had brain surgery in March 2011 & was 2 years seizure free but started having smaller seizures again in 2013 which my neurologists confirmed were focal seizures.

Before my surgery my aura was a dream like vision & the feeling that I needed to go to the bathroom (but I never lost control of my bladder). It was always the same type of dream but I never remembered it until I was about until I was in the seizure so very hard to explain. After the 'aura' part I would go into the complex partial stage & lose awareness.e though mo

I have auras now with the seizures I have but they are different to what I had before surgery. My auras are now a strange noise which is very hard to explain except that it is damn annoying lol. Sometimes I get a different noise as well which is still new & only happened in June.

I recently saw my neurologist at the epilepsy clinic for a follow up appt & mentioned the change of noises. He explained that the area in my brain where the seizures are coming from is close to the part which controls noise so even though most of the time it will be the same noise there will be times it may alter (eg sometimes i may only hear the noise from 1 ear & not both).

I'm lucky with my memory as it isn't too bad most of the time I had neuropsych assessment before surgery and another last year when I was in for a veeg. Both assessments showed that my memory was in the normal range and hadn't changed much since surgery. The only main times I tend to have issues with memory is when I'm busy, tired or stressed.

I always find it hard to explain the auras, as usually only time i remember them is when im in the seizure. So when the specialists ask me to describe them it is hard. It's also sometimes hard trying to explain to someone who doesnt have epilepsy or much knowlege of epilepsy (eg a medical professional) what happens when I have the seizures.

 

[LostInSpace]

Hi Gilles,

I thank you for your suggestion. I will definitely consider attending a group, I know it will help. Just thinking about it, brings me to tears.

Thank you again.

 

[LostInSpace]

Hi LostInSpace,

I've had temporal lobe epilepsy for 44 yrs. and there have been times where I have hallucinations where I will see colors flashing back and forth in my eyes and hear one
word repeated over and over again. This all part of the neurons firing up triggering
the seizure.

I found seeing an Epileptologist the best thing I ever did this Dr. was able to explain why all of this happened and I was able to have surgery to reduce my seizures 50% or more. As far as the short term memory mine isn't very good and a lot of that is do to the surgery not to mention all the seizure meds I've taken over the yrs.my Dr.old me to do a lot of math, word search puzzles and brain teasers to better my memory and it has worked a little. He also told me to stay off the cell phone because they have proven that if a person uses their cell phone every day for 30 min. or longer it will shrink and harden the hippocampus of the brain causing short term memory loss. I see it in students I work with in public school. Here's wishing you the best of luck and May God Bless You!

Sue

Hi Sue,

Thank you for the response. I also see an epileptologist. However, most times I feel like I am speaking to a shrink. Nothing is explained to me, I just talk and they ask me if this or that is still occurring. I am at a very good university hospital, so I am not sure if this is a strategy, or if I am dropping the ball here by not asking. I have asked if the auras/ seizures worsen over time or if they cause permanent damage. For example, i am on Lamictal. I am not blacking out anymore, so is the rising sensation really a problem that needs to be treated? Is it really worth chasing? Because I feel fine afterwards. They told me that it can worsen. They have mentioned surgery to me in the past. If you don't mind me asking, what made you a candidate for having the surgery? ... As for doing math and puzzles, I teach math in both public school and college. Thank you!

 

[valeriedl]

I was diagnosed with epilepsy 13 years ago when I was 27. The seizure came out of no where. It was a horrible grand mal that I had to be put into a coma for about a month because they couldn't get my brain to 'calm down'.

After I was out of the coma I lost almost 15 years of memory. There was very little of high school and college that I remembered. People would tell me things that happened that I didn't remember doing. There was a Wal-Mart built about 3 miles away from my house that I didn't know was there. I didn't even know who my boyfriend was at the time! It seems like things that I really like stuck up there. There's a job that I worked at that I loved, I think I could have gone back there and worked without a problem. Must not have liked that boyfriend too much though?

At first my memory was horrible. Things wouldn't stay up there for any longer than a week most of the time. When I'd have a seizure I'd forget things that happened that day and even a few days before. Even now my memory is bad. After a few months, and sometimes shorter, things start to fade away. I'll ask the same question to someone over and over again. They'll get mad because they think I'm trying to be funny by doing it but I'm really doing it because I don't remember the answer after they told me 10 times.

I like to read before I go to bed. Last week I didn't read the book one night, had a seizure the next then didn't read the next night. When I started reading the book again things just weren't making sense going on in the book. I had to start reading it again to understand what was going on.

When I came out of that first seizure my vision changed a lot. I had to get new glasses because I could barely see.

Auras are really hard to describe to someone who doesn't have them. Everyone has different types too, many times I don't have them at all before a seizure. Sometimes I'll get light headed, dizzy, lips will tingle, I'll hear things and see things. Once I swear my aunt was in the house and another all the furniture in the living room was in the wrong place. I must get some type of 'look' too because my husband (who's seen me have more seizures than anyone I know) will tell me that I've got the 'seizure look'. I'll usually have a seizure shortly after.

I don't think I've ever wet myself during a seizure.

At first I didn't like telling people that I couldn't drive or didn't work. I was afraid that they'd think I'd gotten a DUI (like you said) or that I was on welfare and just miking the system like they say everyone else does. Now it just comes right out that I don't do either and it's because I have epilepsy.

I'm an outgoing person too. I'm always the one walking around talking to people. When I bring up that I have epilepsy I'll usually tell them about the more funnier seizures I've had. Sometimes they might ask about seizures and I'll try to answer them as best as I can. Like you said it's hard to describe seizures and what they are like to someone who doesn't know anything about epilepsy.

I would defiantly give the support group a try. There will probably be people there who have the same type of seizures you do and can relate. My father in law had seizures when he was younger and they were mostly only simple partials. When I talk about something epilepsy related he usually knows exactly what I mean.

 

[LostInSpace]

Hi Valeriedl,

I thank you for your response. Just prior to my diagnosis, my memory had become really bad. My best friend told me I had a problem. Which I've known for a while, but since my family doctor said I had "mommy brain", I let it alone. I stopped driving for the nine months and my husband was taxiing me every where (I am eternally grateful for his understanding). I remember very early on him driving me to work and as soon as we got in to the car I stated to him that I liked the song playing on the radio and I asked who sung it, "Taylor Swift", he replied. This scenario actually played out three days in a row!!! On the fourth day, I said it again, I quickly realized "oh this was on yesterday?" I thought he was going to lose it. Since then, we have referred this to my "fifty first dates" moment. While I find it funny, I don't think he finds as much humor out of it it as I do. I get it. Things are not quite as bad now, as the medication has helped out a lot. My co-workers were able to open up to me about how bad things had gotten, "wait, what did you say?" I would ask a question and wouldn't even hear an answer. I teach elementary and college students. One time I had actually posted the same problem four or five times to my college students. They thought it was hysterical because they knew I was "kidding around ". I wasn't. And I felt horrible. I do not have moments these extreme anymore, but my memory is still not good. I rely on my phone alerts, checklists and calendar greatly. I know longer freely write problems on the board and have all of my math problems compiled into my smart board lessons.

Thanks again for sharing again!

 

[gnault]

I actually started to explain / "apologize" to some people when I catch myself being too "wordy" when explaining or dealing with situations at work. Some of the issues I have were all explained in my neuropsychologist assessment. I am completely off of the Lamotrigine and I'm now on Vimpat. I feel a bit more alert so far. My biggest problem was ignoring that there was a problem and not accepting it.

I am well controlled so at times it is still kind of weird to even say in my head that I have epilepsy / am epileptic.

 

[seagull]

Can relate to that.i don't get devastion but I do get panic starts in pit of belly working upwards think you going to die in seconds or the smell.i get simple focalsand complicated vocals I do have full sz but not often.pounding head ache which I found out is brain swelling never knew that doc said always sleep them off not good to carry on with what you were doing