New here - possible temporal lobe simple partial seizures

[misterbutterman]

Hey everyone, I've been lurking on this site reading stories and getting some information over the last 4 months or so after starting symptoms which sounded so incredibly like many others. I'm currently waiting for a referral to go through so I am able to get a EEG to see if they can find anything to support a diagnosis for TLE.

My name is Patrick, I'm a 33 year old photographer from Long Island, NY. Last August I started having strange symptoms when I would get out of the shower on some mornings a few times a month. I would instantly get an overwhelming sense of deja vu and would then get visions of what seems like they were something out of a dream sequence of some kind. The scenes seem to change but are sometimes the same and are usually something a long the lines of remembering a person I do not know and having a conversation in a place I've never been. During these "Deja Vu" visions I have an extremely intense emotional connection to what is being remembered - for example I'll think "wow I rememeber her! I remember this! This is crazy, wow.". As this is all happening however, I have a very intense feeling of impending doom/anxiety as well as shakiness and some confusion. While all of it occurs I try and look myself in the mirror and calm myself down and I haven't seen/noticed any kind of ticks and I'm fully able to communicate with myself and those around me. I'm usually saying something out loud like "oh wow this time I wont forget whats happening" while seeing these vivid images.

After about 20-30 seconds the vision is completely gone and begins to completely dissolve from my memory almost as fast as it came on. It becomes extremely frustrating because during those moments its so vivid and I have all of these strong emotions about what is happening. It feels as though at the time there will be "no way i'll forget this, this time". However, I always mostly do - except for some very vague details no longer with any emotions tied to them.

What happens next is what to me is the worst part. I have an extremely intense strong feeling of detachment. As though the world around me isn't even real. A feeling as if I'm dreaming. I also feel as though I'm not myself. My emotions are strange, and my memory of what has happened during the last 48hrs or so becomes very spotty. Unfortunately this stage seems to last the rest of the day, sometimes even longer. I spend the rest of the day shaky, nervous, detached and afraid. Very rarely I'll even get an odd sense of calm and spend the rest of the day feeling like a zombie.

Another interesting thing I've noticed is that I'm more able to remember memories from my childhood after these attacks. Normally its very simple memories, I've never experienced any kind of trauma or abuse or anything like that. But it is at these times I remember these feelings as I used to get them often as a child. I used to tell my mom when i was around the ages of 8-13 I'd feel as though "I'm in another dimension" and could never really describe the feeling I was having. I'd always say "I feel like I'm in a dream world".

From that point on in my life I'd always had ongoing spats of anxiety and possibly depression. I had seen therapists and even had an EEG as a child and it was all chocked up to Anxiety disorder - maybe somehow this is all that is actually happening?

I can say that these events didn't return in my life at this magnitude until this past August when I was going through an extremely rough time in my life. My girlfriend of 3 years had cheated on me, I was changing jobs, I'm also dealing with Crohn's disease and was having a decent amount of flare ups - I started smoking cigarettes again (after quitting for 8 years) and drinking caffeine again during this time. This was all from January to August and after that 8 month period these attacks started.

Lasty I'll point out any time I'm sick I get similiar issues where I don't sleep and I'd sometimes wake up in panic and not really know whats going on around me. I've had that all my life as well.

Sorry for the long drawn out first post! I appreciate all the advice and support people have given on here, a lot of the posts had made me feel much less alone whether this is stress/anxiety related or simple partials. Hopefully I'll get some more answers in the upcoming week or two and be able to have a better understanding about whats going on, though I understand these diagnosis can be very difficult.

Thanks again, and I would greatly appreciate any input from the community here!

Patrick

 

[Porkette]

Hi Patrick,

Welcome to CWE! Everyone here has been a great friend and help to me and I've had right temporal lobe epilepsy for 45 yrs. I'm no Dr. but it sounds like you may be having simple partial seizures also called aura seizures. This happens to me often. I will see colors of the rainbow flashing back and forth in my eyes and get a nervous feeling in my stomach. I learned that the moment that this starts to tighten up all the muscles in my body and make my hands into tight fist and this will stop the seizure if I do it quick enough. Depression is all part of having epilepsy especially if it's coming from the right temporal lobe because that's the area of the brain that shows emotion.
Stress and lack of sleep are 2 of the main things that can trigger seizures for many people. Sometimes when I'm sick with a cold or virus I will also have seizures because the virus is messing up my body chemistry.
When you take a hot shower that is firing up the neurons in your brain and triggering seizures. I had the same problem and my Epileptologist told me to keep the water cooler and it's made a big difference. If I may ask do you have headaches or feel really tired after any of these possible seizures? This is how I felt until I had surgery to help reduce my seizures. My advice to you is to have your family Dr. refer you to see an Epileptologist which is a Dr. who specializes in epilepsy. Also get a calendar and write down any time you may have had a seizure along with a description of the seizure by doing this the Dr. may see a pattern as to what time of day/night you had any seizures and what days of the month. I often have seizures the 3rd week of the month do to hormones changing and that could also effect you. You may want to try using vitamin B12 1000 mcg. once a day to help keep the nerves calm. I also use medical marijuana I started in last yr. and it has reduced my seizures to the lowest I've ever had in my life. If you have problems sleeping you may want to have a sleep study done along with an e.e.g and e.k.g I had one done and I found out I was having seizures in my sleep. If you notice you are more tired than usual in the morning this may be the reason why. Have the Dr. check for sleep apnea or any other sleep disorder. I wish you the best of luck and May God Bless You!

Sue

 

[misterbutterman]

Sue, Thank you so much and also for such a quick response!

Yes, reading stories here, I was both frightened and amazed/comforted at how similar everyone's symptoms were to my own. Frightened because I may have epilepsy but comforted that I'm not crazy or alone.

I have to see my regular doctor this week and I will ask him if he can set me up with an Epileptologist, I'm hoping he can since my insurance is terrible.

I do find I am exhausted very often upon waking. Now that you mention it also, at the beginning of august I woke when an extremely stiff neck and my vision was literally buzzing. Everything was blurry and it scared the hell out of me. I wear contacts but my vision was is nowhere near as bad as it was waking up that morning and I felt extremely messed up and nauseous.

I had been drinking that night but it was nothing major and I just attributed it to that. Since I was alone I will never know if I had some kind of event during my sleep that night.

As far as headaches I never really get them. I do also get vertigo often - mostly positional, though recently I've had a few episodes waking with it no matter what i was doing and it was horrible to get through the day.

Being sick for me all my life has caused me issues with sleeping/panic/anxiety etc. Whenever I don't get sleep I sometimes risk falling into that mode where you're between sleep and awake and i'll startle out of my rest completely disoriented. I'll say random things that don't make sense and become paranoid or afraid. Those episodes then get better as a little time goes by and I wake up a bit more but then will start to return as a lul myself back to sleep. It's an awful cycle when I'm in it. Last night I had another one of these possible seizure episodes and then felt completely whacked out all night and any time I'd fall asleep I'd wake up shortly after disoriented and in a panic. It's a vicious cycle.

I was thinking of trying marijauna to help with this though I haven't used it in a while because it had started to give me panic attacks years back in my late teens and early 20s. I might have to give that another shot.

The advice about the shower is extremely interesting and thank you for that. Almost every single episode I've had was either in the shower or getting out of it. And always in the waking or going to sleep hours.

I've never had any actual visual disturbances as of yet and those color flashes in your eyes sound terrible. Mine are just always like I'm seeing something "in the minds eye" like a day dream in my head just EXTREMELY vivid.

Thanks so much again for all your kind words and information so far! You really have helped make my day that much better for reaching out and welcoming me to CWE!

Patrick

 

[Jumpwhat]

I have temporal lobe epilepsy and what you're describing after showering is exactly what I experience with my simple partials. Ironically one of my triggers was also showering right after waking up in the morning. Prior to medication I would have them almost every morning in the shower followed by a splitting headache and feeling fuzzy for a good half hour. I never had the lingering symptoms during the rest of the day though, even when I was having up to 12 a day. I would also frequently have simple partials as I was waking up or falling asleep too. They changed slightly over the years but always felt similar. I'm now 100% controlled on Keppra and haven't had an episode in almost two years. Good luck to you and I hope your pcp can help you get set up with a neurologist!

 

[misterbutterman]

Aw man, you have no idea how much it makes me feel better to hear something like this. Feeling alone with this situation, as you already know is awful. That gives me a lot of comfort reading that post. Hopefully, if/when diagnosed I will have a similar outcome.

It's always only during the sleeping/waking hours this happens to me. Made 10x worse if sick or not sleeping regularly.

Thanks so much for reaching out man! You've both been so welcoming and helpful.

Patrick

 

[Porkette]

Hi Patrick,
I'm no Dr. but I'm wondering if you are having myoclonic seizures. These are seizures that happen when a person goes to bed and a little while after they wake up. Take not if this happens. Besides simple partial seizures I also have absence and complex partial seizures. According to my Epileptologist complex partial seizures are the hardest to control because activity is coming from both sides of the brain. I will tell you that drinking alcoholic beverages is not a good thing to do when you have epilepsy. So you
should stay away from it. I forgot to tell you to take note of what the weather is like when you possibly have a seizure. Sometimes the weather can effect some people like if there's a low pressure in the weather it can sometimes cause seizures for some people. The reason this happens is because the air is heavier and that in turn effects a persons hormones which can sometimes trigger seizures. My Epileptologist told me about this.
If you want to try the medical marijuana you can get it on line. Check out healthy hemp oil.com but if you are taking any other meds check with your pharmacist first to be sure it won't interact with any prescription. I have been using the liquid mouth spray and I squirt 1-2 squirts twice a day in my mouth and it has done wonders. What I like about the healthy hemp oil website is that if you find that med. marijuana isn't working you can get your money back in 90 days. Here's wishing you only the best and May God Bless You!

Sue

 

[Nakamova]

Hi Patrick, welcome to CWE!

I can say that these events didn't return in my life at this magnitude until this past August when I was going through an extremely rough time in my life. My girlfriend of 3 years had cheated on me, I was changing jobs, I'm also dealing with Crohn's disease and was having a decent amount of flare ups - I started smoking cigarettes again (after quitting for 8 years) and drinking caffeine again during this time. This was all from January to August and after that 8 month period these attacks started.

Most folks with seizure disorders tend to have a primary cause -- along the lines of head trauma, or genetics, but is undetermined in the majority of cases -- that makes them vulnerable to seizures. And then there are the secondarycauses -- triggers that may play a role in bringing on the seizures. Triggers are different for different people and can change over time, but the most common one is fatigue (and the precursors to fatigue such as emotional stress). Triggers can be physical, physiological, emotional, and/or environmental. Stimulants (such as nicotine and caffeine) are often problematic for people with epilepsy. So those may have played a role in your episodes. In addition, nutritional deficiencies and electrolyte imbalances and can be seizure triggers, so I suspect that the Crohn's may also be a factor for you.

In addition to controlling seizures via medications, identifying and avoiding triggers and being proactive about your general health can potentially be useful in minimizing your risks. Good tips can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

best,
Nakamova

 

[misterbutterman]

Thanks so much for the replies. I've been trying to think of specific head trauma I've had but the last one I had was when I was about 17 While kneeboarding and smacked my head on the water going about 20mph. I felt like shit afterwards but no concussion that I'm aware of or anything. A few days after that the vertigo did start though. I also feel as though these episiodes/feelings may have started when I was younger as a child.

As far as genetics go my grandmother on my mothers side has epilepsy but she would have full on grand mals. However, my Aunt has had a few Grand mals and my mother gets weird spells similiar to mine minus the deja vu which have been dismissed as panic attacks/anxiety when she has them by doctors.

Given all that I'm not really sure what to think. Does anyone else feel completely strange, as though things around them aren't even real after simple partials or ones as strong as a grand mal? I feel like this is the worst part for me. Each time I get one of these I'm stuck in a kind of limbo for days where I act very differently and feel very differently. Nothing around me will seem even real kinda. Lots of recurring negative emotions/feelings/thoughts. It's been a few days and I still feel completely helpless and like I'm not even here..

I've noticed when the weather is shitty and rainy/overcast I seem to get more issues

Patrick

 

[Topcat]

Hi misterbutterman and welcome.
Funny how you mention the memories of your childhood.
It was a closed head injury that (apparently) caused the onset of my seizures. My short term memory is awful. I have had it checked by an expert in the field. But I can remember some things from my childhood very well.
Porkette. Thanks for the info about the showers. I usually (almost always lately) have a Focal seizure in the mornings. Very often it's in the shower.
Of course I am not wearing my VNS activation magnet then.

 

[Jumpwhat]

I can second the feeling of isolation and relief when you meet "someone like you". I too realized that I had seizures as a kid that my parents always chalked up to being dehydrated or not eating. Mine were related to a series of head injuries and got more and more frequent after each one. i too have the secondary triggers of showering in the morning (I always shower at night now and if I can't, keeping the heat down seems to help), being sick, sleep deprivation, certain lighting, etc. medication prevents the actual seizures but I still feel off every once in awhile. Definitely not a seizure but it feels like I would have had one if I wasn't on medication, if that makes any sense. I sorta understand that feeling you were explaining in your more recent message. I get silent migraines (migraine without the headache) and that is similar to what you are describing, I think. Definitely mention that to your doctor as well. Migraines and seizures frequently go hand in hand.

It took me a long time to put things together aka having seizures almost every hour during college finals and get myself to a neurologist. My symptoms weren't what I thought seizures were like and for a long time I thought they were weird anxiety attacks even though I never felt anxious. Trust your gut and make sure you connect with your neurologist. If you don't click or disagree with what they say, get a second opinion. I'm off to medical school this fall thanks to my neurologist and trust her completely.

 

[Porkette]

Hi Patrick,

Often when I have a simple partial seizure. I will be sitting in my own living room but then all of the sudden nothing looks familiar to me. I have found that if I concentrate and tell myself "your in the living room" it helps me out a lot and the seizure stops.
Also in regards to trauma you may want to ask your mom if she had any problems while she was carrying you. I found out that when my mom was 4 months pregnant that she went through trauma after my Grandfather passed away. This in turn caused to many brain cells to go on my right temporal lobe and in turn cause scar tissue on my brain.
Genetics also are a big part I have 3 cousins that have epilepsy but my Epileptologist told me my seizures were not genetic because I have absence and complex partial while all my cousins had grand mal (tonic clonic) seizures. Here's wishing you only the best and May God Bless You!

Sue

 

[misterbutterman]

Hey thanks a lot for coming in and saying hello Topcat.

I've started not using as hot water as well as using an extremely small amount of xanax after waking up which is seeming to help so far this week. I break a quarter of a pill of a .25mg tablet so its probably just placebo but it hasn't happened yet again this week.

However I'm still stuck with tons of anxiety and feeling pretty derealized/depersonalized. I don't know if thats common for this sorta thing or not. I just feel so strange still and its been almost a week.

 

[misterbutterman]

I can second the feeling of isolation and relief when you meet "someone like you". I too realized that I had seizures as a kid that my parents always chalked up to being dehydrated or not eating. Mine were related to a series of head injuries and got more and more frequent after each one. i too have the secondary triggers of showering in the morning (I always shower at night now and if I can't, keeping the heat down seems to help), being sick, sleep deprivation, certain lighting, etc. medication prevents the actual seizures but I still feel off every once in awhile. Definitely not a seizure but it feels like I would have had one if I wasn't on medication, if that makes any sense. I sorta understand that feeling you were explaining in your more recent message. I get silent migraines (migraine without the headache) and that is similar to what you are describing, I think. Definitely mention that to your doctor as well. Migraines and seizures frequently go hand in hand.

It took me a long time to put things together aka having seizures almost every hour during college finals and get myself to a neurologist. My symptoms weren't what I thought seizures were like and for a long time I thought they were weird anxiety attacks even though I never felt anxious. Trust your gut and make sure you connect with your neurologist. If you don't click or disagree with what they say, get a second opinion. I'm off to medical school this fall thanks to my neurologist and trust her completely.

Yeah man all of this is so much like myself. Any of those things screw me up completely. I just got a referal for my neuro through and I will see him next week. Hopefully I can start getting some answers soon.

 

[misterbutterman]

Hi Patrick,

Often when I have a simple partial seizure. I will be sitting in my own living room but then all of the sudden nothing looks familiar to me. I have found that if I concentrate and tell myself "your in the living room" it helps me out a lot and the seizure stops.
Also in regards to trauma you may want to ask your mom if she had any problems while she was carrying you. I found out that when my mom was 4 months pregnant that she went through trauma after my Grandfather passed away. This in turn caused to many brain cells to go on my right temporal lobe and in turn cause scar tissue on my brain.
Genetics also are a big part I have 3 cousins that have epilepsy but my Epileptologist told me my seizures were not genetic because I have absence and complex partial while all my cousins had grand mal (tonic clonic) seizures. Here's wishing you only the best and May God Bless You!

Sue

She said that she had some issues with bleeding and that afterwards everything was normal though. She did say I would climb out of my crib a lot after being born and smack my head lol. Ugh.. that should count as some trauma at a young age..

 

[misterbutterman]

Hi Patrick, welcome to CWE!


Most folks with seizure disorders tend to have a primary cause -- along the lines of head trauma, or genetics, but is undetermined in the majority of cases -- that makes them vulnerable to seizures. And then there are the secondarycauses -- triggers that may play a role in bringing on the seizures. Triggers are different for different people and can change over time, but the most common one is fatigue (and the precursors to fatigue such as emotional stress). Triggers can be physical, physiological, emotional, and/or environmental. Stimulants (such as nicotine and caffeine) are often problematic for people with epilepsy. So those may have played a role in your episodes. In addition, nutritional deficiencies and electrolyte imbalances and can be seizure triggers, so I suspect that the Crohn's may also be a factor for you.

In addition to controlling seizures via medications, identifying and avoiding triggers and being proactive about your general health can potentially be useful in minimizing your risks. Good tips can be found here:

best,
Nakamova

Thanks so much for all the info! Yeah I'm tapering off cigs and coffee all this week. It's just been tough since I feel so strange still and I'd normally use those as coping mechanisms. I'm thinking within a few days I'll be free of all of it so then I can hopefully see what things are like without any added chemicals interacting with my brain chemistry.