Update on mental health

[CQ:)]

In August 2010 my neurologist diagnosed me with anxiety. Around the same time I started seeing a new psychologist via video teleconference, originally it was to help me with my stress which had built up but she also confirmed I have anxiety.

The psychologist I see now has been great helping me with a lot of stuff, especially the anxiety, but there was still a lot going on in my personal life later this year that even therapy wasn’t helping. So at my last appointment with the neurologist in October I mentioned how my moods were worse and my overthinking/ anxiety was worse. I discussed with him about whether he’d consider putting me on an anti anxiety medication. He was happy to consider it but instead of putting me on the medication he wanted me to speak to their neuropsychiatrist who’d have a better idea of best medication. Instead of just doing the referral he asked me 1st that I was happy to speak to the neuropsychiatrist then he went through with the referral.

Because my epilepsy specialists are in the city and due to the covid our appointments are still teleconferences usually phone. I had a phone appointment with the neuropsychiatrist at the end of November. She also confirmed I have anxiety but also mentioned I have depression.

While on the phone and half way through the appointment I had a complex partial seizure and hung up on the psychiatrist, she had to ring back. Once she knew I was ok we continued with the appointment.
She has put me on a very low dosage of a depression med. Because the med I’m on can affect your heart she also asked my dr arrange a standard ECG to make sure my hearts ok which I had last week. I haven’t seen the dr to get the results for my psychiatrist yet but the technician said it was all normal.

The neuropsychiatrist mentioned she wants to speak to me in the new year but I haven’t followed it up yet.

I know what’s going on has been building up and not related to covid at all (not stressed about COVID). I have a great psychologist and great epilepsy team who are helping.

 

[Porkette]

Hi CQ,

I wish you the best of luck with your appt. I have seen a neuropsychologist before and after I had brain surgery he was able
to see what side of my brain I was using the most for my short term memory and he also told me that stress was triggering most
of my seizures.

When I told him I was depressed a lot of time he told me it was my seizure meds along with the seizures because they were
coming from the right temporal lobe and that's where a persons emotions area so when the neurons started to fire up for seizures
I would be depressed for no reason.

My Epilepsy Team told me to stay away from anti depressant because they were going to reverse what my seizure meds did.
What I did is keep myself busy and listen to music that helped me more than anything.

Wishing You the Best of Luck and May God Bless You,

Sue

 

[CQ:)]

Thank you
I already have a neuropsychologist who was part of the epilepsy team involved with my surgery.

The person I spoke to late November was a neuropsychiatrist. The med she has me on is only very low dose and so far only minor side effects.

I still keep in contact with my neuropsychologist and my epilepsy nurse. They both work with the neurologist & neuropscyhiatrist so if I have any concerns, questions or anything that has to be passed onto the psychiatrist or Neurologist I email the nurse or neuropsychologist.

I'll wait until the new year until I find out when my follow appt is with the psychiatrist.
I also have one with the neurologist coming up in a couple of months so will follow that up soon too.

 

[Cint]

Hi CQ,

I have seen a neuropsychologist before and after I had brain surgery he was able
to see what side of my brain I was using the most for my short term memory and he also told me that stress was triggering most
of my seizures.

When I told him I was depressed a lot of time he told me it was my seizure meds along with the seizures because they were
coming from the right temporal lobe and that's where a persons emotions area so when the neurons started to fire up for seizures
I would be depressed for no reason.

My Epilepsy Team told me to stay away from anti depressant because they were going to reverse what my seizure meds did.
What I did is keep myself busy and listen to music that helped me more than anything.


Sue

Hmmm.........Interesting because after my LEFT temporal lobectomy, I went into a deep, deep depression. My surgeon and neurologist sent me to a neurologist-psychiatrist who specialized in mood disorders with epilepsy patients. He said the LEFT side of the brain is where moods and emotions are mostly controlled. I have a damaged hippocampus and that is where the memory is controlled. He had me try multiple medications--- starting with try-cyclic meds. None of them worked for me, so my psyche put me on an SSRI. And, some of the anti-seizure meds are used for mood disorders, too. It was an arduous trial before we found the right unit-depressant-Zoloft.
So I could stay severely depressed(suicidal at times) or try the anti-depressant.

I tried some music therapy and some acupuncture, too. None of that stuff worked for me. So I will keep listening to the experts in the field of EPILEPSY!

 

[CQ:)]

My surgeon and neurologist sent me to a neurologist-psychiatrist who specialized in mood disorders with epilepsy patients. He said the LEFT side of the brain is where moods and emotions are mostly controlled. I have a damaged hippocampus and that is where the memory is controlled.

I spoke to my epilepsy nurse after I spoke to the neuropsychiatrist to find out if there was anything I needed to know about the new med. I also talked to her about how I felt having anxiety and depression. She had a good chat to me and I’m fairly sure she said the same thing about moods and emotions to me because my seizures come from left front temporal lobe. She also told me if I have any concerns or issues with the med to let them know, I don’t have contact details for the psychiatrist but my nurse or neuropsychologist can forward any issues onto her.

He had me try multiple medications--- starting with try-cyclic meds. None of them worked for me, so my psyche put me on an SSRI. And, some of the anti-seizure meds are used for mood disorders, too. It was an arduous trial before we found the right unit-depressant-Zoloft.
So I could stay severely depressed(suicidal at times) or try the anti-depressant.

I have only had 1 experience with anti depressant med, my old neuro put me on an anti depressant 18 years ago because I was always upset. I had a reaction to it where I was hearing voices so was only on it for 3 months. He did an an mri then said the depression med reacted with my tegretol and decided I was just stressed (not depressed) so didn’t want to do anything else. I later found out from the specialists where I go now that the voices were actually seizures related to the type of epilepsy I have.

Before I spoke to my neurologist I spoke to my neuropsychologist about going on an antidepressant, she knows how bad my overthinking gets and knew about the history of the other med. She felt it was worth at less talking to the neurologist about it. When I talked to the neurologist about it I told him about my concerns because of my history with the other med.
My neuropsychologist, neuropsychiatrist, neurologist and epilepsy nurse all told me the antidepressant have changed a lot in 18 years and there are more antidepressants available for epilepsy.

I tried some music therapy and some acupuncture, too. None of that stuff worked for me.

I have music on a lot for my bird. I used to walk a lot as a hobby but lost interest in it which seemed to concern my neuropsychiatrist.
I have been trying to get back into hibbies like coloring in and recently jigsaws but the overthinking gets in the way with the coloring in so my psychologist is helping with that and im only just starting the jigsaw but i had been getting impatient with that before I started the med.

I haven't done much since going on the med because im adjusting to the medication

 

[CathyAnn31]

Hi CQ, sounds like you're on the right road to feeling better.

Have you tried knitting or crochet? I did okay with that but it would be frustrating. I should try again, it would probably help me with weight loss.
New Years resolution for me..knitting a pair of socks while losing 20 pounds.
(I eat when I get bored and it would keep my hands busy..lol)

 

[CQ:)]

Hi CQ, sounds like you're on the right road to feeling better.

Have you tried knitting or crochet? I did okay with that but it would be frustrating. I should try again, it would probably help me with weight loss.
New Years resolution for me..knitting a pair of socks while losing 20 pounds.
(I eat when I get bored and it would keep my hands busy..lol)

Thanks Cathy
I think knitting, crochet would frustrate me

I did cross stitch when I was about 16/17 until my late 20s. I stopped doing it after a while because the meds I was on at the time made me tired and lost interest so haven’t done it for a while.

I started my 1st jigsaw pic before Christmas and left it while I adjusted to the meds. It’s a mystery one so I don’t know the pic until I finish it. Last night I got the border done so was happy about that, don’t think I got it right but I’ll have to wait and see

I’ve got a color in pic going to but it’s going to take me a while as I only do a little bit at a time. I usually find mistakes in my pictures but everyone who sees them loves them.

I sleep when I’m bored so that meant I wouldn’t sleep at night
But with these new meds I’ve been getting tired so even with a nap I still get to bed at a reasonable time and sleep.

 

[Plasticmask]

They don't know what they're doing, when it comes to our brains. I really love it when someone says that they were told 'this or that section of my brain controls this or that'. THEY HAVE NO IDEA.
Favorite anecdote: Young lady (which could just about be any age, at this point) WHO I KNEW IN A GROUP was diagnosed via EEG that her GM epilepsy was Left Temporal Lobe based, and since years of Rx could not help her, it was recommended that she have the entire lobe removed. She went through that, and actually did well for two months before it all came roaring back just exactly like before. Guess what the EEG showed? You guessed it: Left Temporal Lobe Epilepsy. They couldn't explain to her how that is even POSSIBLE. In other words, THEY HAVE NO IDEA WHAT THEY ARE DOING.
I've got TONS of stories like that. We are little more than lab rats, and the neuros are experimenting on us in the DARK wearing sunglasses under a blindfold. In fact, MY neuro team admits that they really don't know how the human brain truly works, and that we Humans probably never will, at least for several more Generations, and that THAT is why they are so grateful to us for going in, suffering all of their torturous testing, and swallowing their poisons.
To make an omelette...

 

[Nakamova]

I think it doesn't help that every case of epilepsy can have a different cause (genetic, traumatic, unknown), and play out in different ways. The current treatments are definitely blunt hammers, and they all seem to be designed to stop seizures after they start, not prevent them in the first place.

There's a lot of research going on (see https://www.cureepilepsy.org/news/#news-featured for a sample), but it would awesome if there were real cures in our lifetimes.

 

[Janus]

Yes. My neurologist said: we don't know how your meds work on your brain. I have retractable (uncontrolled, always unpredictable, status) so, I have no argument. At this point I have nothing to loose by keeping trying to find something. Yeah. I've been having emotional problems, BIG depression/suicidal ideation. Tremors, confusion, memory problems. Anger outbursts, and I had to stop using kepra years back, for this reason. I'm taking 750mg depakote twice a day, lamotrigine once per day. And two blood pressure meds. (This is likely the 'side' effects of some meds, in my case.

 

[Nakamova]

I'm taking 750mg depakote twice a day, lamotrigine once per day. And two blood pressure meds. (This is likely the 'side' effects of some meds, in my case.

I never had high blood pressure until started taking lamotrigine. It's not listed as a side effect, but I suspect that it is. So far I've avoided having to take BP meds, but sooner or later one of my docs may recommend it.

 

[Janus]

I forgot to say that I also take vimpat at night. 50mg. That seems small, it's just that the higher dose caused problems. I'm just going through the experiments, I just really want the seizures to stop. RIGHT NOW I have gone almost 2 months with no Tonic Clonics. This is good. Sometimes I have a few a day. So does this mean I'm father away from my last seizure OR CLOSER TO THE NEXT? I think I'll just try to breath and chill as much as possible. East good food and pray for life.

 

[Music36]

Hi CQ,

It’s quite common for people who have epilepsy to have anxiety and/or a mood disorder. I have generalized anxiety disorder and bipolar disorder. I had epilepsy surgery in 2015 (left hippocampus and amygdala removed) which made the anxiety and bipolar worse. The amygdala has to do with our emotions and there is an amygdala in both the left and right temporal lobe.
I did not actually get diagnosed with bipolar and anxiety disorder until after the brain surgery made it worse. I lived in denial for years and tried to be my own therapist which is ridiculous I know. Believe me I know because I have a a Master’s degree in counseling. I was trained to become a therapist. The epilepsy surgery made the anxiety and bipolar a thousand times worse where it was than impossible to live in denial. It still took me a few years after the surgery to start seeing a psychiatrist and therapist. Therapy has greatly helped but so has me doing lots of research and changing the way I think and interact with others. For example, I used to have a lot of anger. Mindfulness and exercise have greatly helped me manage both my physical and mental health. First, I got back into speed walking. Then I started running. I now speed walk and run about 15 miles a week. I can’t run long distance so I alternate between walking and running. It greatly helps my chronic pain and mental health. In addition to epilepsy and my mental health issues, I have chronic pain from an autoimmune disease (Sjogren’s Syndrome), fibromyalgia, and several issues with my back. I also have IBS. A few years ago I was in unbearable pain a large percent of the time getting steroid injections in my back and taking muscle relaxants, pain killers, anti-inflammatory drugs, and steroids which is all really bad for us. I haven’t touched any of those drugs in a few years. The healthy, natural way is the best. Healthy diet, exercise, and mindfulness greatly help to manage all my health issues. Our diet can also effect our mental health, not just our physical health. I used to be addicted to sugar and chocolate which effects our emotions. I now eat an anti-inflammatory diet (for example: no red meat), dairy-free, gluten free, no chocolate, etc. I’ve done a lot of research on mindfulness and practice it daily. It helps tremendously with stress, anxiety, anger, and depression. Art and writing can greatly help.

 

[Nakamova]

Music36, out of curiosity, were you ever specifically diagnosed with "autoimmune epilepsy"?

 

[CQ:)]

Hi CQ,

It’s quite common for people who have epilepsy to have anxiety and/or a mood disorder. I have generalized anxiety disorder and bipolar disorder. I had epilepsy surgery in 2015 (left hippocampus and amygdala removed) which made the anxiety and bipolar worse. The amygdala has to do with our emotions and there is an amygdala in both the left and right temporal lobe.
I did not actually get diagnosed with bipolar and anxiety disorder until after the brain surgery made it worse. I lived in denial for years and tried to be my own therapist which is ridiculous I know. Believe me I know because I have a a Master’s degree in counseling. I was trained to become a therapist. The epilepsy surgery made the anxiety and bipolar a thousand times worse where it was than impossible to live in denial. It still took me a few years after the surgery to start seeing a psychiatrist and therapist. Therapy has greatly helped but so has me doing lots of research and changing the way I think and interact with others. For example, I used to have a lot of anger. Mindfulness and exercise have greatly helped me manage both my physical and mental health. First, I got back into speed walking. Then I started running. I now speed walk and run about 15 miles a week. I can’t run long distance so I alternate between walking and running. It greatly helps my chronic pain and mental health. In addition to epilepsy and my mental health issues, I have chronic pain from an autoimmune disease (Sjogren’s Syndrome), fibromyalgia, and several issues with my back. I also have IBS. A few years ago I was in unbearable pain a large percent of the time getting steroid injections in my back and taking muscle relaxants, pain killers, anti-inflammatory drugs, and steroids which is all really bad for us. I haven’t touched any of those drugs in a few years. The healthy, natural way is the best. Healthy diet, exercise, and mindfulness greatly help to manage all my health issues. Our diet can also effect our mental health, not just our physical health. I used to be addicted to sugar and chocolate which effects our emotions. I now eat an anti-inflammatory diet (for example: no red meat), dairy-free, gluten free, no chocolate, etc. I’ve done a lot of research on mindfulness and practice it daily. It helps tremendously with stress, anxiety, anger, and depression. Art and writing can greatly help.

Thanks Music
I knew anxiety and depression can be common in people with epilepsy.
After my brain surgery in 2011 my overthinkinking got worse, especially when the seizures returned in 2013 as they were different.
I already have a neuropsychologist who is part of the epilepsy team in the city but I’ve seen a couple of different clinical psychologists and a councillor. At the moment I’m seeing a clinical psychologist through teleconference who I’ve been seeing since mid 2020 and she’s pretty good. It was both she and my neurologist who confirmed I had anxiety but my neuropsychologist mentioned it a couple of times before my official diagnosis.


I’ll admit it took me a while to accept the anxiety but I already had a feeling I had depression before the psychiatrist told me. It took some chatting to the psychologist and my best friend and after being told by my psychologist and the neurologist/ neuropsychologist/neuropsychiatrist that I have anxiety for me to sit down and say ok stop being silly and accept you have it.

My moods started messing up mid last year and I have a feeling I know the cause (not covid related).
That’s when at my next appointment to my neurologist I mentioned my moods and the anxiety being all over the place to him and we had a chat about me talking to their neuropsychiatrist.

I’ve only had one appointment with the psychiatrist so far but I believe I have another coming up so need to follow that up.

I have another appointment with my clinical psychologist coming up.

 

[Music36]

Nakamova,

No, I don’t have autoimmune epilepsy. I’m not even familiar with that term. I’ve had epilepsy my entire life. I developed Sjogren’s Syndrome, which is similar to Lupus, in my 40s but didn’t realize what was going on and talk to my doctor about it and get diagnosed until I was about to turn 50.

 

[Music36]

CQ,

For years, I felt overwhelmed and shame related to my health issues. Once I reached full acceptance and realized there’s nothing to be ashamed of and learned how to manage all my health issues in a healthy way I came to feel empowered.

 

[CQ:)]

CQ,

For years, I felt overwhelmed and shame related to my health issues. Once I reached full acceptance and realized there’s nothing to be ashamed of and learned how to manage all my health issues in a healthy way I came to feel empowered.

Music
I’ve had epilepsy pretty much my whole life so that I’ve never had much issue dealing with.

But dealing with the anxiety had been harder, having the right people to talk to has helped me.


Im starting to find hobbies to get into (colouring in / jigsaws) but I take my time or do some then go back.
I do enjoy walking but haven’t done a good walk (apart from when I walk from work) for ages, it’s summer here so when the weathers nicer and I’m feeling ok I’ll try to go out for a walk again .

 

[Nakamova]

Nakamova,

No, I don’t have autoimmune epilepsy. I’m not even familiar with that term. I’ve had epilepsy my entire life. I developed Sjogren’s Syndrome, which is similar to Lupus, in my 40s but didn’t realize what was going on and talk to my doctor about it and get diagnosed until I was about to turn 50.

Don't want to hijack the thread, so here's where you can learn more about autoimmune epilepsy, a diagnosis made when folks have a number of autoimmune conditions (such as Sjogrens and IBS) in addition to e: https://www.epilepsy.com/learn/epilepsy-due-specific-causes/autoimmune-epilepsy

 

[Music36]

Nakamova,

I appreciate your information, but I don’t have autoimmune epilepsy. I was born with epilepsy. I had a grand mal seizure the day I was born. There is scarred tissue on my brain which part of my brain was removed in 2015. IBS didn’t start until my thirties and Sjogren’s Syndrome and fibromyalgia developed in my forties.