Really just trying the get a perspective on this.

[Alison1975]

I love NMDA blockade, and calcium channel blockers. Apparently loving these drugs is a moderate to strong indicator of temporal lobe epilepsy. I seem to have a lot of the symptoms so I thought I'd get some feedback.
A lot of my life feels like a dream but other times it is as clear as crystal.
I often freeze frame and when people ask what I'm doing I say I'm thinking which I am doing but I'm kind of stuck.
Under heavy stress I tend to contract my chest repetively.
I have a major history as a psch patient, Usually diagnosed as bipolar. Sodium val seems to help I admit.
Sometimes I just drop shit, and I just react by thinking, yeah that's happen all day. Some days are bad for this.
I often just lose thoughts in my head, I know they are there but I just can't find them.
Occasionally I really lash out at people and have no understanding of emotional cues at these times. I'm kind of used to this. I just deal with the outcome nowadays.
I sometimes move in really jerky way.
Sometimes my vision gets really shaky. Can't describe it much better than that, it's weird and very tiring.
Sometimes too, I notice everything which is really overwhelming.
Sometimes I come-to and have no idea where I am, even in a very familiar place. I figure it out eventually.

Thanks for any feedback.

 

[Porkette]

Hi Allison
Welcome to CWE. I have had temporal lobe epilepsy for 44 yrs. and take my word stress and lack of sleep are 2 things that can trigger seizures.
Sometimes a person with temporal lobe epilepsy will be very emotional especially if the seizures are coming from the right temporal lobe, its that area of a persons brain that shows emotions and when seizures are starting up in that area it can sometimes make a person start to cry or laugh for no reason along with losing their temper.
I have a feeling you may be having complex partial seizures. I have them and when I do I start to see different colors flashing in my eyes then I get a nervous feeling in my stomach after that I blank out but I often wander around and when I come out of the seizure it takes me a couple of seconds to realize where I am but I don't remember walking to that area. My advice to you is to see a neuro or an Epileptologist if you haven't yet and get an e.e.g. done this will show if anything is going on. I wish you only the best and May God Bless You!

Sue

 

[masterjen]

Welcome to CWE, Allison!
I take it you have been to at least a neurologist if you are on a NMDA receptor antagonist medication for your seizures . . . Exactly what medication are you on for this? To my knowledge, Fycompa is the only one that acts in this manner; is this what you are on? Ketamine sort of does, but is not a routine medication to prescribe.

When was the last time you saw your neurologist or epileptologist? Might be time for an appointment if it has been a while and esp. if your seizures have changed in frequency or type to up date him/her. Seeing an epileptologist is a good idea if don't already, as they specialize in epilepsy.

Again, welcome to the forum and looking forward to seeing you around!

 

[Frink]

Hi Alison1975,
Welcome to CWE.
I am a bit confused by your post and will wait for more information.

 

[Kgartner]

I love NMDA blockade, and calcium channel blockers. Apparently loving these drugs is a moderate to strong indicator of temporal lobe epilepsy.

I'm kind of confused by this statement. What do you mean when you say you "love" NMDA and calcium channel blockers? Were you prescribed those types of drugs for some reason? And I'd be curious where you read that this is a strong indicator of TLE. My daughter has TLE and I've never heard that before - she takes several drugs to control her seizures, but her relationship with them is more love/hate, i.e. she is grateful that they partially control her seizures, but hates the side effects (tiredness, memory issues etc).

Have you been diagnosed with seizures or epilepsy? A lot of what you describe can be consistent with certain types of epilepsy, but they are also very non-specific symptoms that could be due to other things as well. For instance, "auras" or simple partial seizures can include the experiences you describe but they also tend to be episodic (i.e. have a very specific moment in which they start and stop), fairly brief in duration (i.e. seconds to about a minute, although they can cluster) and stereotyped (i.e. someone has the exact same experience each and every time).

If you gave us a bit more information we would be better able to help you sort this out.

 

[acshuman]

! ! ! ! Welcome to CWE ! ! ! !

There are many understanding, helpful people here to help you! :clap:

ACsHuman

 

[Alison1975]

Thanks, some feedback.

Ok. MXE, K, DXM, ethanol and Magnesium block NMDA receptors - if available I will live on any of these, I forget where I read that TLE tends to make you love these drugs or minerals, I know I read it somewhere. Which is OK I guess but apparently they are extremely bad for you if you have TLE. Lignocaine and caffeine block calcium channels, I tend to use these pretty compulsively, both of which are easily available. Arguably nicotine will help memory issues (which is a symptom of TLE)- I smoke too.
I know a lot of these drugs will cause these symptoms I described but I had the symptoms long b4 the drugs. And I'm pretty straight currently.

When I followed the leads on TLE and then I asked people if I actually do these things. Roughly confirmed:
Talk in circles too long to get to the point.
I write/type constantly.
I a rabid atheist with a crazyily complex self thought out life philosophy.
Have a complete disregard for sex. I like being in a relationship, sex comes with that. Otherwise rather read, write or get wrecked.
Not just TLE causes these symptoms though. And it's a generalisation anyway.

In an attempt to clarify some of what I wrote:
My short term memory is a complete disaster. Long term is either eidetic or just nothing. Much of my life has the vibe of a dream to it. But some of it is crystal clear.
I get really bad visual disturbances at times and sometimes my hearing is kind of distorted, mostly I can't tell how loud things are. People talking over the road sound like they are in my lounge room. But it has a marbles in tin can vibe to it.
I do tend to have days when my limbs and hands get sort of disconnected. I tend to drop things a lot on these days.
And often life just feels out reach, it's hard to describe this feeling. It's kind of like reality is happening in front of you.
I do get partial seizures at times. But on the negative side, it just feels like something I have to do. Not too sure about that really.
Sometimes people talking to me sounds like nails on a chalkboard. Often I just deal with it. I can barely talk when I feel like this. It's just really painful.
When I get angry I get cold and totally act out. I've learnt to hide in bed (possibly for days) when I feel like this. The fallout is unbelievable.
And I have these moments when the universe just talks to me and I feel I can see and feel everything. Great yes, symptom as well. I can get this feeling anytime with/without drugs. Sometimes it continues for days though and it just gets so so overwhelming. You would do nearly anything to get away, come pretty close to getting away permanently a few times.

Thanks for the replies everyone. I'm just looking for some relatively informed feedback before I decide what to do.

I just trying to figure out whether I should chase this up. Its' going to be a nightmare. "Psch patient questions diagnosis," yeah it's going to get me, "angry, cold and acting out."
And looking totally deranged. Which you know doesn't help. But obviously it could read as a psch symptom. I'm not sure which is right myself. So it's just going to be painful.

Thanks again for your time.

 

[Porkette]

Hi Allison,
It could be the ethanol that is causing all of the problems to much ethanol can fire up the neurons in the brain and trigger seizures for a person. In regards to temporal lobe epilepsy it has been proven that many people do like to write but in the 44 yrs. I've had epilepsy it's never bothered my sex life. Some people just like to talk in general because they are lonely. Your speech is on the left side of your brain but today they are finding more women have speech split on both sides of the brain. I found this out after having neuropsych testing done before I had brain surgery to find what area of my brain I was using for speech and memory. As I had mentioned before a lot of the emotions come from the right temporal lobe but behavior is the frontal lobe. Do you ever feel tired or have a headache after these possible seizures? My advice to you is to see a Epileptologist along with a neuropsychologist who can do testing on you to find out what's going on but in the meantime stay away from the ethanol because it can make your seizures worse. Wishing you only the best of luck and May God Bless You!

Sue

 

[Frink]

Hi Alison1975,
After 38 years of living with TLE (and being misdiagnosed for 27 years)I can say I have never had a love for any of these "MXE, K, DXM, ethanol and Magnesium".
I have never tried the first 2, DXM in cough syrup I have tried but not enough to get high, just the recommended dose to stop choking on phlegm.

I do take a dietary supplement of magnesium because my levels are low but certainly not enough to cause an NMDA block or hallucinations.

I did drink alcohol quite a bit around the legal drinking age (21), went to/worked in bars, nightclubs, parties, etc. but that grew old after a few years and I stopped.

Hypergraphia can be a side effect of TLE but it is not for me, I pretty much hate writing.

a lot of what you describe as possible TLE symptoms could be caused by other issues such as chemical use/dependence/withdrawal, schizophrenia and even bipolar disorder.

TLE, and other disorders, can be a very individual experience and is best diagnosed by an epileptologist and or neuropsychologist.

I am curious what your seizures are like.

 

[Cint]

Sometimes a person with temporal lobe epilepsy will be very emotional especially if the seizures are coming from the right temporal lobe, its that area of a persons brain that shows emotions and when seizures are starting up in that area it can sometimes make a person start to cry or laugh for no reason along with losing their temper.

Not necessarily. My seizures come from the left temporal lobe, deep in the hippocampus and I've suffered from deep depression as many have who also have TLE. I have a damaged hippocampus, which is the part of the brain that is essential for memories. Folks have said I've been emotional during a CP seizure, but of course I don't remember.

Here is a link for more info on E and behavior/moods:
http://www.epilepsy.com/learn/impac...and-behavior-101/mood-and-personality-changes

And as Frink said, hypergraphia is another 'side-effect' from TLE. And some famous poets & writers had E. That is why they wrote.............

 

[masterjen]

I'm guessing you have "self-prescribed" these drugs, am I right? If so, you have a serious problem that needs dealing with. There is a myriad of interactions among these drugs as well. I'm afraid all I can say is no wonder you are feeling the way you are (visual disturbances, disconnected, etc. etc.) Even if some of your symptoms may not have been there initially with these drugs they can develop over time when you abuse them.

Again, get help and proper treatment for your problems related to "self-medicating" and you seizures. There are medically approved ways to treat epilepsy caused by faulty communication in the brain involving NMDA receptors (see my first post), but this will require you see an epileptologist. Continually posting here seeking answers for your problems is not the way to do it. We are not experts.

 

[Bernard]

Hi Alison, welcome to the forum.

You might find this thread of interest:

http://www.coping-with-epilepsy.com...ex-partial-nead-nes-pnes-including-ptsd-1680/

 

[Zoe]

Hi Alison,
Temporal lobe epilepsy is sometimes misdiagnosed as bipolar. If that's your concern, you can look around to find a doctor to re-evaluate you. Here's a link to an article about it.

Complex Partial Seizures Present Diagnostic Challenge ...
SimilarTemporal lobe epilepsy (temporal lobe epilepsy), now more commonly called complex partial
seizure ... Indeed, misdiagnosis and failures of diagnosis are common in temporal lobe epilepsy.
http://www.psychiatrictimes.com/articles/complex-partial-seizures-present-diagnostic-challenge

 

[Frink]

http://www.psychiatrictimes.com/articles/complex-partial-seizures-present-diagnostic-challenge

For some reason the link in Zoe's post did not work for me.

This link is a link to the original article, quoted in Brains post, linked to by Bernard in his post (#12) above.

http://www.psychiatrictimes.com/articles/complex-partial-seizures-present-diagnostic-challenge

 

[Zoe]

It looks like it may have been truncated when originally posted, so here's the full link. I'll test it after posting here. If it works, I'll correct the original post.

www.psychiatrictimes.com/articles/complex-partial-seizures-present-diagnostic-challenge


*** It looks truncated here also but works when I test it so am putting it into the earlier message as well.**

**I just tested all three copies of the link and each one worked.**

 

[Cint]

Temporal lobe epilepsy is sometimes misdiagnosed as bipolar. If that's your concern, you can look around to find a doctor to re-evaluate you. Here's a link to an article about it.

And sometimes, bipolar disorders/mood disorders do go along with TLE, like I mentioned previously. Find a neuropsychiatrist who specializes in brain disorders and an epileptologist to make the correct diagnosis.
Make sure you check the link I provided with the correct info.

Complex Partial Seizures Present Diagnostic Challenge ...
SimilarTemporal lobe epilepsy (temporal lobe epilepsy), now more commonly called complex partial seizure

No..... TLE is called that because they originate from the temporal lobe. A Simple Partial can originate in the Temporal Lobe as can a Complex Partial seizure that generalizes. It is still Temporal Lobe Epilepsy.
http://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy

... Indeed, misdiagnosis and failures of diagnosis are common in temporal lobe epilepsy.

Indeed, they are. I was misdiagnosed as hypoglycemic when I first started having CPs that eventually generalized.

 

[Frink]

I was misdiagnosed as hypoglycemic when I first started having CPs that eventually generalized.

Me too, I was misdiagnosed for 27 years with everything from malingering to anxiety/panic disorder.

 

[Zoe]

Me too, I was misdiagnosed for 27 years with everything from malingering to anxiety/panic disorder.

Same here, seizures and strokes misdiagnosed as bipolar episodes, hysterical personality type, hypoglycemia, depression, you name it! Too much!

 

[Frink]

Same here, seizures and strokes misdiagnosed as bipolar episodes, hysterical personality type, hypoglycemia, depression, you name it! Too much!

After a while it starts to test your faith in the medical profession.

 

[Zoe]

After a while it starts to test your faith in the medical profession.

And after I lost my faith I took matters into my own hands. I did my own research and got my seizures to stop ten years after brain surgery for them failed.op: