TLE, ECT-like effects and depression

[kirsten]

I have had the most insane couple of days mood-wise and now I've switched out of them, thankfully, but I'm scared they might happen again. I didn't want to write about them here while they were happening because it goes against our TOS but now that I'm better, I'm hoping I can discuss it to find suggestions if they happen again. So I was wondering about coping mechanisms for those who lived alone.

I got madly panicked and I was certainly having complex partials a lot during those days. Thing is, I got so wildly depressed that I became actively suicidal. The kind where you actually do the research and figure out how you're going to go about the whole thing. In other words, the dangerous kind. The next day I still felt that way, so I called my psychiatrist, who told me that the seizures I was having were kind of like having electro convulsive therapy, and that they destabilised your moods. She didn't want to make any changes to my meds because my neuro's doing a med switch, but she told me to call my neuro to make the next step up with my meds sooner. My psych said she couldn't really do anything while I was still so unstable with my epilepsy (heard that one before.) On that day I was switching in and out of depression in a matter of minutes, and the next day I was still depressed but not as suicidal. Then I woke up this morning feeling completely fine emotionally. Still having absence seizures but my mood is stable and normal. I'm perfectly happy and very, very far from depressed.

Those who don't have epilepsy would get immediate help if they were that depressed. With us, though, it appears that it's more complicated than that. So if we live alone, as I do, how exactly do we cope? How do we keep ourselves safe? What tools do we use?

 

[lindsayschu2]

Call someone--you can usually find a suicide or crisis hotline number in your area by Googling, and talk to them, or someone trusted, but don't hurt yourself, and keep reminding yourself that it is a TEMPORARY mood that will pass. I was getting like that on Topamax and I know what you mean. In time I did learn that no matter how despondent I felt that the next day I usually felt different--so the next time I felt horrible some part of me could hold onto the fact that it would pass. Or come on here and post. I also started using deep breathing and imagining a comforting, happy scene--same one every time. I'd really focus on this warm happy scene and it was a kind of training to lift my mood and calm thoughts, and I also use it to calm myself when I feel a seizure coming on. Take care and know you are in our thoughts.

 

[Cint]

I've struggled with depression and seizures for years and now I live alone. There were times I've been suicidal also. Depression and TLE do often times go hand in hand and much research has been done. Once, I was seeing a neuropsychiatrist who specialized in depression with E and he had me try sooo many different anti-depressants because I was suicidal. Nothing was working and he said that maybe I needed to have a seizure once in a while to help alleviate the depression. I thought he was nuts!

Now if I find myself feeling that way, I will call my dr. immediately. As Lindsaychu said, it is only temporary, suicide is forever. And some of these meds can cause these side effects, also, so DO call your dr. ASAP if you are feeling this way.

Read what others have discussed in the past about the AEDs risks:
http://www.coping-with-epilepsy.com/forums/f22/suicide-risk-11-epilepsy-drugs-2416/

 

[masterjen]

I am so glad you made it out of that rut, Kirsten!! Definitely let your family doctor, neurologist and psych. know. The more that know the better - who knows who will be the most efficient to call back. Anyone can say "cheer up", but when you're down like that it is pretty tough to crawl back up on your own - congratulations for finding the way out Any chance it is the Neurontin?

 

[Penny]

Kirsten,

Look up mindfulness exercises. Mindfulness is what my therapist and I have worked on this last year when I have been suicidal.

I have had over 100 ECT's over the last 12 years (none in the last 3, I refuse due to memory) believe me TLE and ECT's are nothing alike. ENT's are tonic/clonic seizure induced. They are actually used to help suicidal depression and when so far gone it does temporarily help there are just other side effects to deal with.

Anyway, mindfulness is the best route although not easiest I have found to deal with SD. Always have someone to talk to too!!!!!

Hopeing the best for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[kirsten]

I didn't even consider that the suicidal thing might be the Neurontin. About seven years back when my epilepsy was very uncontrolled I'd switch in and out of it as though a bus had just hit me. In those days I most certainly did not take my AEDs as prescribed, so I've related this past crisis to the epilepsy itself. Tomorrow I'll call and make an appointment with my neurologist rather than waiting for him to get back to me, which could take ages.

I looked up mindfulness exercises and I now understand the gist of what they're about. Thankfully, the one thing I'm lucky enough to have is the kind of garden most people only dream about, and our Egyptian geese have just arrived for the winter, so as I see it, next time I feel that way, going out into the garden with the geese and my camera would be a pretty good mindfulness exercise.

Another thing I really haven't been doing is *anything* I enjoy, because I've been feeling too ill. Today I was forced to go out because my landlord had a show day, so I took myself to the movies and treated myself to my favourite lunch. That was really good for me. Before then I was starting to feel depressed but now I'm fine again. I went to see American Hustle and somehow ended up being the only person in a full cinema who was actually laughing. That has to be a good sign. (Bad sign for the rest of the audience, though. How a crowd can sit through that movie straight faced is beyond me.)

 

[Cint]

I didn't even consider that the suicidal thing might be the Neurontin.

Well, according to this post
http://www.webmd.com/epilepsy/news/20080131/suicide-risk-from-11-epilepsy-drugs?src=RSS_PUBLIC, Neurontin is one of the drugs listed.

About seven years back when my epilepsy was very uncontrolled I'd switch in and out of it as though a bus had just hit me. In those days I most certainly did not take my AEDs as prescribed, so I've related this past crisis to the epilepsy itself.

Not taking your meds as prescribed in and of itself could cause one's moods to go crazy, let alone cause more seizures. Plus with TLE, there can be mood swings/problems, anxiety, etc.

http://www.epilepsy.com/epilepsy/interprob_depress

Interictal depression , occurs in 25% to 55% of patients (1,2). Further, the suicide rate of persons with epilepsy is more than five times that of controls (1,3). Interictal depression has biological mechanisms (family history of depression, structural lesions, AEDs) and psychosocial-reactive mechanisms (1,2,4–6). The burden of suffering depression causes is enormous. In one study of patients with medically refractory epilepsy, depression was by far the most significant predictor of poor quality of life, overriding seizure frequency and severity (7). Depression was common (54%), underdiagnosed, and largely untreated in this population (only 17% were taking antidepressants) (7). In two separate studies, use of tricyclic antidepressants or selective serotonin reuptake inhibitors (SSRIs) by patients with epilepsy more frequently led to reduced seizure frequency than to exacerbation (8,9). If corroborated by larger, prospective studies, this finding may be secondary to improved sleep and mood, factors associated with reduction of seizure frequency.

 

[Penny]

I'm glad you looked up the mindfulness exercises. I know they have helped me so much.

Sure do wish I had a garden like yours!!!

 

[arnie]

Cint, thank you for your post on the link between depression and epilepsy. It makes me wonder if, for those of us who have had epilepsy for much of our lives, especially refractory epilepsy, our "baseline" mood is already a somewhat depressed state. If that is the case it might be hard to even diagnose it unless we got to the point of being suicidal. The DSM criteria for depression pretty much rely on changes in baseline behaviors and feelings to determine depression. Maybe for many of us there aren't changes because a certain level of depression is our norm. That's a depressing thought, isn't it?

 

[kirsten]

It's an interesting point to think about, Arnie. I believe that anyone with a chronic illness might have a more depressed baseline state.

I must say, though, that ordinarily I truly don't qualify for the DSM's criteria for depression: When I'm not identifying as depressed, I'm up and full of fireworks before the sun rises, sleeping soundly at night, taking more than my share of enjoyment out of life and not at all withdrawn. I hadn't looked at the new DSM's criteria, though, and I found them very interesting, because there are some new additions: lots of computer time, self injury, reduced work performance...Here they are: http://www.psnpaloalto.com/wp/wp-co...n-Diagnostic-Criteria-and-Severity-Rating.pdf

 

[Cint]

It's an interesting point to think about, Arnie. I believe that anyone with a chronic illness might have a more depressed baseline state.

I must say, though, that ordinarily I truly don't qualify for the DSM's criteria for depression: When I'm not identifying as depressed, I'm up and full of fireworks before the sun rises, sleeping soundly at night, taking more than my share of enjoyment out of life and not at all withdrawn.

Most people with TLE don't "qualify" for the DSM's criteria for depression, at least I didn't either. My neuropsychiatrist told me I was one of the most difficult patients he had ever treated and he was a specialist in treating mood disorders in epilepsy patients. A lot of people with TLE have rapid mood swings and sometimes just having a seizure will alleviate the depression. Sometimes I would be down and out for days. Other times, I would be feeling really great, but finally realized that I needed to beware because I was going to fall within a day or two, maybe an hour or two. And I would fall hard. I wasn't actually bi-polar, but my neuropsychiatrist diagnosed it as IDD-interictal dysphoric disorder. Here is more info:

https://www.epilepsy.com/epilepsy/behavior_personalitychanges
Dysphoric disorder and depression

Dysphoria means loss of pleasure or joy. (You may know the more common word euphoria, which means extreme joy. They share the same root.) Many people who have epilepsy experience dysphoric episodes. These episodes, which can last between a few hours and a few days, consist of depressive moods, irritability, lack of energy, pain, anxiety, insomnia, and euphoric moods. Usually they are part of a syndrome known as interictal dysphoric disorder instead of being linked to recent or upcoming seizures.1 (Interictal means "between seizures.")

People with interictal dysphoric disorder (IDD for short) aren't always depressed; there are times when everything is OK, and times when everything is not. These times are connected to seizures, but not the way you might think. Often IDD is discovered or becomes worse when seizures are fully controlled or less frequent. Some scientists believe that the same chemicals and paths that slow or stop seizure activity also lower levels of other brain activity; this change can be linked to depressed mood and many of the symptoms of IDD.

What's the difference between IDD and depression? Some people have long, severe, and consuming dysphoric episodes. These people have a different mood disorder: major depression. Many of the symptoms are the same as in IDD. The difference lies in their severity. With depression, these symptoms are present for 2 weeks or longer without letting up. Thoughts of death appear repeatedly and suicide may be considered or attempted.

In the general population, about 5% to 10% of people are affected by depression or a related mood disorder. The percentage is much higher for people with epilepsy. (The exact numbers vary depending on how the study is designed.) If you have symptoms of depression or IDD, please talk to your doctor. There are many treatments that can help you. You just have to ask.

 

[kirsten]

Thanks for this, Cint. My psychiatrist has told me that my mood swings are caused by TLE but she's never given them the IDD label. Maybe it's time for me to see a neuropsychiatrist. Can I ask how you're treated for the mood swings? Do you take anything to bring down the dysphoria? I've tried quite a few mood stabilisers but they weren't too effective so now I take seroquel, which works like a charm. Most of the time it keeps the high moods away, which tends to keep the low moods away.

It's mainly during times of stress that I sink into depression, but the hypomanic episodes are always far easier to take care of. Currently, my mom's about ready to die, I am having to move, I've been too sick to socialise for months, and my AEDs are in the middle of a change, so none of them are at ideal doses and I'm over-medicated. Before last night I was really scared because I hadn't yet found a new place to live but last night I had an application accepted for a really great place. So I think that the dark mood might just have been a normal response to a stressful situation. But the sudden switching in and out of it had to have been epilepsy--I don't think other people's moods change that suddenly.

 

[Cint]

Can I ask how you're treated for the mood swings? Do you take anything to bring down the dysphoria? I've tried quite a few mood stabilisers but they weren't too effective so now I take seroquel, which works like a charm. Most of the time it keeps the high moods away, which tends to keep the low moods away.

My first neuropsychiatrist finally started treating me with an SSRI, plus a tricyclic anti-depressant and then finally added a small dose an anti-psychotic, like seroquel. But then I couldn't handle those meds because that's what caused my diabetes. So now I take an SSRI, Zoloft.

I So I think that the dark mood might just have been a normal response to a stressful situation. But the sudden switching in and out of it had to have been epilepsy--I don't think other people's moods change that suddenly.

:agree: Stress isn't good for those with E. It does a lot of weird things to our brains.