Temporal Lobe: When your epilepsy gives you psychological symptoms

[Ouarezki]

Hello, can anyone relate?

Basically I have only ever had one major tonic clonic seizure

After a couple of weeks I was put on Lamotrigine then switched to Topirmate due to a really bad allergic reaction.

I get auras and the following symptoms

- increasing anxiety (not the classic anxiety that i've suffered from all my life but a weird differet kind) unbearble, makes me scream and want to commit suicide THAT'S how bad it is

- burning up (my body seems like it's on fire on the inside)

- high blood pressure

- feeling of extreme sadness that incease until it gets to the point (the seizure?) where i wail and scream and cry)

- Insomnia

- Staring into space and automatism ( lip smacking, clenching..etc)

- Feeling of fear and "imepnding doom" for no specific reason

- electric activity in my brain ( can't explain otherwise sorry!)

- bright objects and shapes that change colour and size when i close my eyes ( especially at night during my insomnia days)


*** I've had depression and been medicated for it so I know what mental illness is, this feels waaay different and out of my control, deeper in a sense"

 

[Music36]

Welcome Quarezki,

What you describe is very similar to my complex partial seizures. Intense fear is my aura and I continue to feel the intense fear during a complex partial. It is so powerful and intense and so painful. It's like physical pain. There's been a few times when I had an intense euphoria during the seizure along with the intense fear which is really wild. You would think the intense euphoria would be a good feeling. But, it's so powerful and intense that it's unbearable. Yes, the seizures can come on all of a sudden out of nowhere for no reason. Of course, stress can trigger seizures but I don't even have to be feeling stress. Having these seizures greatly effects my state of mind. I feel like a frightened little girl for no reason. It's crazy. But, seizures can have some pretty crazy effects. I also have auditory hallucinations during a complex partial. If people are talking, it's all distorted. I can't understand what people are saying.

 

[Music36]

I forgot to mention I get nausea, as well, from seizures. I should also mention that I had epilepsy surgery June 2015 and I have not had a complex partial since the surgery. I still get auras, though. This morning I had a simple partial. It was scary. I'm afraid I may go back to having complex partials, but I certainly hope not. It feels like it is wanting to go into a complex partial, but something is stopping it, which is because of the surgery, of course.

 

[Ouarezki]

I forgot to mention I get nausea, as well, from seizures. I should also mention that I had epilepsy surgery June 2015 and I have not had a complex partial since the surgery. I still get auras, though. This morning I had a simple partial. It was scary. I'm afraid I may go back to having complex partials, but I certainly hope not. It feels like it is wanting to go into a complex partial, but something is stopping it, which is because of the surgery, of course.

Would you mind talking about how it all started for you?

Did you / do you suffer from depression or anxiety?

What medication have you been on?

How did your doctor come up with the diagnosis and describe your case?

 

[Cint]

Hello, can anyone relate?

I most certainly can!

Basically I have only ever had one major tonic clonic seizure

After a couple of weeks I was put on Lamotrigine then switched to Topirmate due to a really bad allergic reaction.

I've had numerous TC seizures over the years and was put on numerous meds after a failed temporal lobectomy, Lamictal was one and now I take Topomax along with Keppra. My seizures initially started as Cps.

I get auras and the following symptoms

- increasing anxiety (not the classic anxiety that i've suffered from all my life but a weird differet kind) unbearble, makes me scream and want to commit suicide THAT'S how bad it is

- burning up (my body seems like it's on fire on the inside)

- high blood pressure

- feeling of extreme sadness that incease until it gets to the point (the seizure?) where i wail and scream and cry)

- Insomnia

- Staring into space and automatism ( lip smacking, clenching..etc)

- Feeling of fear and "imepnding doom" for no specific reason

- electric activity in my brain ( can't explain otherwise sorry!)

- bright objects and shapes that change colour and size when i close my eyes ( especially at night during my insomnia days)

These symptoms sound to me like they could be seizures/side effects from the medication. Sometimes the meds make the anxiety much worse as anxiety DOES go hand-in-hand with E. So does mood disorders. Are you seeing a neuropsychiatrist and an epileptologist? They need to work TOGETHER!! I was for quite a while because of the deep, deep, depression, and psychotic feeling the seizure/meds brought on.

*** I've had depression and been medicated for it so I know what mental illness is, this feels waaay different and out of my control, deeper in a sense"

If that is the case, then tell your dr. ASAP. Like I said, Epilepsy and Mood Disorders go together for some.

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

Why does one medicine make me feel different and another one doesn't?
Different seizure medicines work on different chemicals or neurotransmitters in the brain. Your mood and behavior also have a chemical basis, so they may be affected if the medicine you're taking works on the same chemicals. Another medicine that works on different chemicals probably will not have the same effect.
Often, side effects will occur or will be worse because the amount of medicine you take is increased too fast or the level in your blood is too high. If you notice changes in your mood when you are starting a new medicine, let your doctor know. A change in dosage may help.
Individuals react to medication in different ways. Your doctor doesn't know what side effects (if any) will definitely appear when you are given a particular medicine. One that works well and has no side effects for you might have very negative effects for another person.

And more info on Anxiety/Depression:

http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-101/anxiety

Anxiety is a core emotion that many people experience at certain points in life. Anxiety can become a disorder, however, if it gets out of hand, causing a constant feeling of nervousness, distress, and unease for no apparent reason.

How is anxiety related to epilepsy?
Anxiety can be quite significant in the life of a person with epilepsy. In any medical illness, people may become anxious after the diagnosis of their condition. But anxiety is also related to epilepsy in more specific ways. It can occur not only as a reaction to the diagnosis, but also as a symptom of the epilepsy or as a side effect of seizure medicines.

http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-101/psychosis

Psychosis in people with epilepsy is most often classified according to the time when episodes occur, in relation to seizures:
Postictal psychosis has been estimated to affect between 6% and 10% of people with epilepsy.
It involves psychiatric symptoms that occur within 7 days (usually within 1 to 3 days) after a seizure or seizure cluster in a person who does not have these symptoms at other times (or at least has them in a much milder form).
These symptoms may include delusions, depressive or manic psychosis, or bizarre thoughts and behavior. They generally disappear promptly when treated with low doses of medication.
They are more common after secondarily generalized tonic-clonic seizures, especially in people who have had seizures for a number of years.

One cautionary tale from me; Be careful though, if your dr. prescribes Zyprexa (used for mood disorders) as some of these meds can/DO BRING ON DIABETES!! Speaking from experience.

 

[Cint]

I should also mention that I had epilepsy surgery June 2015 and I have not had a complex partial since the surgery. I still get auras, though. This morning I had a simple partial. It was scary. I'm afraid I may go back to having complex partials, but I certainly hope not. It feels like it is wanting to go into a complex partial, but something is stopping it, which is because of the surgery, of course.

Let's hope you stay seizure-free. It hasn't been two years yet, so keeping my fingers crossed for you.

 

[Music36]

I was born with epilepsy. I had a tonic-clonic the day I was born, but I was not diagnosed at that time. I remember having complex partials as far back as 7 years old. I was not correctly diagnosed, though, until I had another tonic-clonic at age 21. My doctors as a child and young adult assumed they were anxiety attacks b/c of the intense fear. I knew they were not anxiety attacks b/c my state of consciousness is altered, but I didn't know what was wrong with me. I though I was crazy when I was a teen. I was never sent to a neurologist until I had the tonic-clonic at age 21. I described my "attack" symptoms to the neurologist and he said that's a complex partial seizure. An EEG confirmed. It was a great relief to finally get diagnosed after all those years. Medication was never able to control my seizures (only reduce them). I finally decided to have surgery in my mid forties because the seizures were doing damage (memory problems). Also, I felt better about having the laser ablation surgery which is fairly new. It's less invasive than a traditional lobectomy. I still dealt with a lot of the same side effects, though. But, it was definitely worth it. Also, my memory would probably be worse if I had a lobectomy. My left Hippocampus and part of my left Amygdala were removed. The Amygdala controls emotions. We have one on both sides of our brain. The surgery caused me to feel like I had severe anxiety disorder and was bipolar for about six months. I felt like my personality changed. Eventually, I went back to my old self. It takes a long time for the brain to heal after surgery and you have to be patient. But, I was freaking out for awhile. You don't know for sure what's temporary and what's permanent with the effects of surgery. Things that stay permanent usually end up being much more milder than during those healing months after surgery. My surgeon said it actually takes up to two years for the brain to fully heal after surgery. One thing that seems to be a permanent change is I cry easily now. I very rarely cried before surgery. I was crying all the time the first few months after surgery for no reason. I was a basket case.

I have never been on meds for anxiety or depression. That is not an issue for me. I've been on a number of anti-seizure meds. I currently take Tegretol XR and Keppra XR. I've been on Tegretol for 27 years and Keppra for 10 years. Another drug I was on for a long time is Lamictal. I went off it a couple of years ago.

 

[Music36]

Thanks, Cint.

 

[Music36]

I do have a 25 year old daughter who has generalized anxiety disorder and panic disorder, but she does not have seizures. There are others in my family who also have anxiety disorder. It is a very common disorder and can be genetic.

 

[Ouarezki]

The surgery caused me to feel like I had severe anxiety disorder and was bipolar for about six months. I felt like my personality changed. Eventually, I went back to my old self. It takes a long time for the brain to heal after surgery and you have to be patient.

Wow hats off, that's quiet an ordeal you went through. Glad it has all been worth while though. You've been lucky enough to not have been put on any SSRIs or such throughout because they are so tough to come off and do help in a sense so you might think that they are the solution even though anti eps alone could work so in that sense you're one of the lucky ones. I'm guessing you had some good doctors right?

Thanks for sharing your story

 

[Ouarezki]

@ Cint......all of these symtoms started before I took the anti epilepsy medications

I'd been taking anti depressants since 2009 at a relatively small dose, when I had an verdose it was because the psychiatrist prescribed 3 deifferent anti anxiety meds and anti depressents ( all of which i'd tried before, though NOT together)

I'd been taking them for only 3 days increasing the dose until I got a seizure on the 3rd day. I did an EEG the day after it was a mess but the neurologist said that it was "normal" after what happened", a month later though my EEG was still the same even though i'd stopped all meds........that's when I started the anti epilepsy meds

 

[Music36]

Quarezki,

I know that anti-anxiety meds can be addictive, so I just did some self-therapy and self-talk and hoped the emotional roller coaster would be temporary. I have a Bachelor's degree in psychology and a Master's degree in counseling, so I know a lot about these issues.

Yes, I have very good doctors. I'm lucky to live near one of the top hospitals (Emory) and I see an epileptologist there. They are one of the hospitals performing the new epilepsy surgery procedure (MRI-guided laser ablation). I'm actually part of research b/c I had the this surgery.

As for the side effects I had, I believe they're pretty common for someone who goes through epilepsy surgery. Some people may have it worse than others, though. I also had a lot of trouble communicating for awhile after the surgery, but eventually that got better. I'm pretty much back to where I was before surgery with the memory and communication issues. Although, there does appear to be some changes. But, my brain is still healing. It's been 17 months since the surgery. So, we'll see what happens.

 

[Cint]

It was a great relief to finally get diagnosed after all those years. Medication was never able to control my seizures (only reduce them). I finally decided to have surgery in my mid forties because the seizures were doing damage (memory problems). Also, I felt better about having the laser ablation surgery which is fairly new. It's less invasive than a traditional lobectomy. I still dealt with a lot of the same side effects, though. But, it was definitely worth it. Also, my memory would probably be worse if I had a lobectomy. My left Hippocampus and part of my left Amygdala were removed. The Amygdala controls emotions. We have one on both sides of our brain. The surgery caused me to feel like I had severe anxiety disorder and was bipolar for about six months. I felt like my personality changed. Eventually, I went back to my old self. It takes a long time for the brain to heal after surgery and you have to be patient. But, I was freaking out for awhile. You don't know for sure what's temporary and what's permanent with the effects of surgery. Things that stay permanent usually end up being much more milder than during those healing months after surgery. My surgeon said it actually takes up to two years for the brain to fully heal after surgery. One thing that seems to be a permanent change is I cry easily now. I very rarely cried before surgery. I was crying all the time the first few months after surgery for no reason. I was a basket case.

I had the lobectomy and my memory is very bad. The neurosurgeon said the damage is deep down in my left hippocampus and if we went in deeper, I would end up like an Alzheimer's patient..... no memory!

I also had/have depression before/after the surgery. It is much worse since. My surgeon told me it takes up to two years for the brain to heal, so IMO, you're not there yet. NEVER say never!! My seizures returned much worse as did the depression!

 

[Cint]

@ Cint......all of these symtoms started before I took the anti epilepsy medications

I know. What I'm saying is that you may not have been prescribed enough to control seizures

I'd been taking anti depressants since 2009 at a relatively small dose, when I had an verdose it was because the psychiatrist prescribed 3 deifferent anti anxiety meds and anti depressents ( all of which i'd tried before, though NOT together)
I'd been taking them for only 3 days increasing the dose until I got a seizure on the 3rd day. I did an EEG the day after it was a mess but the neurologist said that it was "normal" after what happened", a month later though my EEG was still the same even though i'd stopped all meds........that's when I started the anti epilepsy meds

You may have been having Cps for a while and not realized it nor did the dr. The anti-depressants can lower the seizure threshold. Often times SP or CP seizures are mistaken for psychiatric problems. It has been misdiagnosed many times!

 

[Music36]

Cint,

I know there's no guarantees and no definite outcomes. I know a surgery can be successful only temporarily sometimes. I know things can get worse for some people after surgery. I did a lot of research before making my decision to have surgery. I believe I made the right decision and whatever happens happens. My neurologists had been trying to talk me into surgery for many years before I decided to do it. I was like hell no. You are not doing brain surgery on me. But, then the memory problems came from the damage from seizures and it just kept getting worse. The seizures were doing what I was afraid of surgery doing. I also felt better about having laser surgery which is fairly new.

I don't know when you had your surgery, but they're learning more and more about the brain and precision techniques in the surgery. For example, they're realizing exactly what part of the Hippocampus to leave in and how much. They're still learning, though. They left the tail of my Hippocampus alone. Also, laser surgery appears to do less cognitive damage than a lobectomy. They're not cutting through the white matter when they do laser surgery like they do with a lobectomy. Cutting through the white matter causes more memory damage. They drilled a little whole in the back of my head and aimed the laser at the exact points and destroyed exactly how much and what they wanted to destroy. Of course, there were also screws in my head with that whatchamacallit thing on my head so that my head wouldn't move. My surgery took 7 hours. Most of that time is spent getting everything set up and having it precisely aimed, so that the least damage is done and the surgery is successful. You're in an MRI the whole time.

 

[Frink]

When I was misdiagnosed with panic attacks I was put on anti depressants and they caused depression and made my seizures go haywire.

 

[Music36]

Cint,

As for depression and anxiety, they know these days that the surgery (Amygdala removal) can possibly make it worse. Some people don't have the surgery for that reason or get it under control with meds before surgery. It depends on the individual situation. Everything has to be weighed in each situation as to what are the risks and how bad are the seizures. Each case is individual. As for me, I'm more emotional now and cry sometimes. But, I much rather be like this than having really bad seizures. As for the emotional roller coaster-that only lasted about six months for me. So, I definitely say it's worth it. If surgery caused permanent or long term severe depression and/or anxiety that would be a different situation. But, I don't think that happens unless there is already an issue or underlying issue before surgery. That's part of the neuropsychological evaluation before surgery.

 

[Music36]

My daughter actually has generalized anxiety disorder and panic attacks, but she does not take meds. She does relaxation techniques and self-talk. As for people who do take the meds, it is best if it is short-term. The meds alone do not solve the issue. Counseling can be very helpful. The way our minds think and react very much effects anxiety and depression. Sometimes, we have to change our way of thinking.

 

[Ouarezki]

I know that anti-anxiety meds can be addictive, so I just did some self-therapy and self-talk and hoped the emotional roller coaster would be temporary. I have a Bachelor's degree in psychology and a Master's degree in counseling, so I know a lot about these issues.

That's good,

I was only a (very naif) teenager when i was prescribed theses darned meds and didn't know any better. I only had minor panic attacks that could have been resolved with some sports or more socializing or just simple therpy for god's sake! Instead I took the meds for VERY very very long, becoming addicted because whenevre i tried stopping it was like coming off heroin no matter how much i wanted to quit it has been impossible.

Now i've gained an enomrous amount of weight and they make you go crazy on sugars....basically i've only got the side effects of the drugs. I've never really needed them and the sad part is I may not ever be able to come off them now .... What with this temporal lobe business.

 

[Ouarezki]

When I was misdiagnosed with panic attacks I was put on anti depressants and they caused depression and made my seizures go haywire.

Sorry to hear that, hope you're feeling better now.....were you first diagnosed with epilpsy though?