Temporal Lobe: When your epilepsy gives you psychological symptoms

[Frink]

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

My seizures started in 1978 after a head injury but I had no idea what they were. in 1995 the seizures got worse and I was diagnosed with panic attacks and was put on anti-depressants and xanax.
In 2005 I was finally diagnosed with TLE. I was only on the antidepressant for about a month or so and I only took the xanax after a "panic attack"/seizure.

 

[Cint]

Cint,

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.

Great that the roller coaster only lasted 6 months for you!! But with Temporal Lobe epilepsy, Depression and anxiety DO go hand in hand with it, so trying to get control of the seizures CAN make the mental problems much worse for some! I had all the neuropsychological work-up and the WADA testing before surgery and was NOT as bad off as I am now, seizure-wise or depression-wise. The neuropsychiatrist (one who dealt with epilepsy and mood disorders) I was seeing back then (in the 90's) said he had NEVER seen anyone this bad off after surgery, so YOU are NOT telling ME anything new! It messed with my seizures, my emotions, my hormones, my everything!! You just had your surgery a few years ago, so IMO, you're speaking a bit too soon.

And if you're having crying spells, isn't that considered a mood-disorder?

 

[Cint]

Cint,

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.

My brain damage is deep in the Hippocampus, therefore the surgeon couldn't even go near it when considering a 2nd surgery back in the 90's. However, just 6 months ago, my neurologist suggested a surgery again since things have improved. I told her "NO ONE is going to touch my head again!!" I won't even allow that sort of surgery. Enough is enough for me.
Not only does cutting thru the white matter cause memory problems, so does having uncontrolled seizures.
But you're right......the neurosurgeons are constantly learning from guinea pigs like us! There is a new book out, "Patient H.M." It's about a kid back in the 1930's in Connecticut who suffered a head injury as a child and then ended up with a severe case of epilepsy. They did a radical lobotomy that left him unable to form new memories. They learned a lot from this patient over the years and the H#(( they put him thru.
A great read.

 

[seagull]

I certainly get that awful fear I think most of relate to some of those things.that fear panic attack when you get a lot of them kicks off other things you become terrified you going to have that awful panic feeling.Staring into thin air yes some is e related and when it is i unaware others times I just not be giving toss about situation and mind wanders off..I would not wish those awful panic fear aura on anyone

 

[Janus]

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.

I have temporal lobe T clonics. And a history of severe depression.

 

[Janus]

Oops I forgot to mention that the depression and problems anxiety have improved since I started depakote. The seizures seemed to increase a little but I feel so much better. So if it weren't for the other side effects of depakote. For example thinning bones, falling out teeth. Thin skin, the"shakes" I have a off and on bad tremmer in both hands. That this may never go away scared me.

 

[seagull]

Oops I forgot to mention that the depression and problems anxiety have improved since I started depakote. The seizures seemed to increase a little but I feel so much better. So if it weren't for the other side effects of depakote. For example thinning bones, falling out teeth. Thin skin, the"shakes" I have a off and on bad tremmer in both hands. That this may never go away scared me.

Were you ever on lamac.i seeing nuro this week and as eeg abnormal temporal lobe.Not sure I want side effects depakote had them when on epilim I certainly don't want keppra those keppra rages sound awful.Alto my eeg abnormal my e not so bad to my knowledge

 

[Music36]

Quarezki,

I'm sorry you went through all that. I hope that you'll be able to come off those meds someday.

 

[Music36]

Cint,

I didn't mean I cry for no reason. I meant that I get hurt easily and cry since the surgery and I also can be more emotional on some days than others. Situations, in which, I used to get angry and just be like F--- you, I now get hurt and cry. It seems like surgery took away my defense mechanism (anger). I don't mean I never get angry these days. I just don't get angry as often or to the same degree since the surgery. For example, if someone in my family yells at me these days it makes me feel hurt and anxiety and I cry. I was NEVER like this before surgery. I used to just get angry and yell back or have no reaction and be whatever.

I used to be a very tough person and I was able to deal with a tremendous amount of stress. I had a lot of stress to deal with on a daily basis for many years. I'm not so strong anymore and that changed before the surgery. I can't deal with stress like I used to be able to. I think I reached a breaking point where I just couldn't take it anymore b/c I dealt with a tremendous amount of stress for many years. Years ago, my sister said to me, "you're a rock." Well, I'm not a rock anymore. I crumbled.

 

[Music36]

Cint,

I'm not trying to talk you into anything. I just wanted to say that laser surgery is for damage that is deep. My damage is deep, as well. I have mesial temporal sclerosis. I don't think I would go through surgery again, either. Once is enough for me.

You mentioned surgery messing with your hormones. What exactly do you mean by that? Surgery had this temporary positive effect on me. It lasted for about six months like the emotional roller coaster. I think it was part of that. Sex was more intense and I had an even stronger sex drive than usual. It was like I was a teenager again. I think it was related to the Amygdala removal.

 

[Cint]

Cint,

You mentioned surgery messing with your hormones. What exactly do you mean by that? Surgery had this temporary positive effect on me. It lasted for about six months like the emotional roller coaster. I think it was part of that. Sex was more intense and I had an even stronger sex drive than usual. It was like I was a teenager again. I think it was related to the Amygdala removal.

For many women, epilepsy messes with our estrogen/progesterone, therefore when we have our brains messed with, it interferes with these hormones. For me, after my lobectomy, I was only 32 years old and started going thru the menopause symptoms. My ob/gyn kept telling me I was TOO young to be going thru menopause and my neurologist at the time didn't understand what my body was going thru. I sure as H#(( didn't understand what I was going thru. I was the patient! Years later and many patients later, they do have some understanding between hormones and E for women.

Read here to understand what I mean:

http://www.epilepsy.com/information/women/all-women/hormones-and-epilepsy
What are hormones?

Hormones are chemical substances formed in organs and glands that travel through the body via the bloodstream. They control and coordinate many body functions such as muscle growth, heart rate, hunger and menstrual cycle. Steroid hormones include the three major sex hormone groups: estrogens, androgens, and progestogens. All three are present in both men and women, but in different amounts.

Is there a connection between seizures and hormones?
Yes, sex hormones can influence the excitability of nerve cells in the brain and thus influence seizure control. Estrogen can excite brain cells and can make seizures more likely to happen. In contrast, natural progesterone breaks down into a substance that can inhibit or prevent seizures in some women.

Are all seizures caused by hormone changes?
Hormones generally do not cause seizures but can influence if or when their happen. Some women with epilepsy experience changes in their seizure patterns at times of hormonal fluctuations. For example, puberty is a time when hormones are stimulating body changes. It is not unusual for certain kinds of seizures to disappear at puberty, while other seizure disorders may start at this time. Many women with epilepsy see changes in the number or the pattern of their seizures around the time of ovulation (mid-cycle), or just before and at the beginning of their menstrual periods.

Changes in seizure frequency in relation to the menstrual cycle is called "catamenial epilepsy."

 

[seagull]

I was also told had panic attacks same as you fink they got worse so was increased the anti depressants was nightmare.i go round holding husbands Belt make sure I was still alive drag hands along wAll if they bled I know I was real.
big difference between them and panic attacks I just had baby they thought part of postnatal depression I was not depressed I was pretty pissed off.I kicked all proffesional out.my doc beg me go just one more hospital I did and doc words were I got good news and bad first you not mentally ill but you got e.and I got to right docs and hospital.
I use word panic attacks bc that nearest you can describe and also get intense euphoria and horror T same time,the euphoria is so intense that it flicks over to sheer panic.
if they remained the same hundreds a day I went from one straight into another then I would had surgery but thought of having knife on my brain no thanks.i cope with it now.i often went into dream like thing half knew what doing half Not.i wander out of shops things in hands unaware like 20 news papers that sort of thing pounding head ache.i was told yesterday brain swells when head ache starts I just wonder how much a body can take if brain swells.I have gone 2years and nothing then out of blue it would happen for days.i would reviewed it if it had carried on.
I read on here and other forums on fb some said best thing ever had others say head aches are worse and things not changed.i guess if got nothing to lose then go for it but indervidual thing.I glad no one put scalpel to my head As eventually things got a lot better but I would not hesitate if ever came back way it when first had it.If they your memory would improve then I rush to operation but I don't think that will happen

 

[Music36]

Cint,

I didn't realize you were referring to catamenial epilepsy. I'm very familiar with it. I used to always get seizures during PMS and menstruation. A previous epileptologist of mine is a pioneer researcher in the effects of hormones on seizures and catamenial epilepsy.

I'm 48 (be 49 in Feb) and I've been in perimenopause for 9 years. That's when the hot flashes and night sweats began. Menopause should come at any time now. For all I know, I may have started menopause or I could get a period today. My periods have been irregular for about 5 years now. If you don't mind me asking, what is your age?

 

[Music36]

Frink and Seagull,

It appears we have the misdiagnosis of seizures for panic attacks in common. As I previously mentioned, I was misdiagnosed through my childhood and teen years. It took having a tonic-clonic at age 21 to get correctly diagnosed. Luckily, my doctors did not put me on anti-anxiety meds. But, I sure wish they had sent me to a neurologist.

 

[Cint]

Cint,

I didn't realize you were referring to catamenial epilepsy. I'm very familiar with it. I used to always get seizures during PMS and menstruation. A previous epileptologist of mine is a pioneer researcher in the effects of hormones on seizures and catamenial epilepsy.

My previous epileptologist and neuropsychiatrist were both researchers in this category, also.

Dr. Dietrich Blumer was my neuropsychiatrist back in the 90's and he's the one who came up with "Interictal Dysphoric Disorder". You can check it out in "The Neuropsychiatry of Epilepsy".

I'm 48 (be 49 in Feb) and I've been in perimenopause for 9 years. That's when the hot flashes and night sweats began. Menopause should come at any time now. For all I know, I may have started menopause or I could get a period today. My periods have been irregular for about 5 years now. If you don't mind me asking, what is your age?

I'm 59 now. I'm glad I finally had the endometrial ablation 12 years ago to end those problems.

 

[Karenhanby]

I can't be anywhere where there is what I call "sensory overload"
This consists of
ikea
cosco
sams
chucky cheese
toys r us
most malls
concerts
anywhere there is crappy fluorescent lighting
anywhere where this is a lot of overhead lighting of any type
places that have strong scents
large groups of people talking
weird carpets of floor patterns
the noise of an xray machine
and a shit load of other places!