Update on mental health

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Genetics probably plays a role in my autoimmune health issues, but nobody in my family has epilepsy. My brain may have been injured during childbirth. I was a forceps baby.
 
CQ,

It’s great that you have started to find hobbies and exercise. It can make a big difference. Brain exercises are good too. When it comes to exercise, you start off slowly and gradually increase. I got back into exercise about 2 1/2 years ago. I gradually increased distance and faster speed came natural over time. I now do a mile in about 17 minutes and that’s with hills. I do a minimum of three miles and maximum of 7 miles on a walk/run. I know my limitations. I average about 15 miles a week. It’s not just about the exercise. I enjoy being outdoors and nature which also has a great effect on our mental health. I also enjoy hiking. I don’t let the cold stop me but I live in Atlanta, GA so it’s not as brutal as the north. I’ll go for a walk/run when it’s 30 degrees out even though I don’t like the cold. I’ll even walk/run in a light rain. I also run in the summer when it’s hot, but I try to get out earlier in the morning.
I always have the option of using a treadmill, but it’s not the same as being outdoors.

I’ve had epilepsy my entire life, as well, but I wasn’t actually diagnosed until I was 21 years old. I had a grand mal the day I was born. I think they may have done tests at the time and didn’t find anything. So, then that was that and it was dismissed I guess. I did’t have another grand mal until I was 21, but I had complex partial seizures all or practically all my life. I can remember having them as far back as 7 years old. It was probably very difficult for me to describe them at a young age. I can remember describing them to my doctor at 12 years old and he assumed they were anxiety attacks because intense fear is my aura. As a teenager, I knew they were not anxiety attacks because of other symptoms and my state of consciousness being altered. I didn’t know what was wrong with me and thought I was crazy when I was a teenager. I thought I was the only one in the world to experience what I experienced. I saw a neurologist for the first time when I had the grand mal at age 21. I described my “attacks” to the neurologist and he said they were complex partial seizures. EEG confirmed. My parents then told me about the grand mal the day I was born. So, I went through my entire childhood and adolescence undiagnosed/misdiagnosed which is so f——d up (excuse my French). Things could have possibly been very different for me if I was diagnosed as a child.


I’ve had anxiety most of my life, but lived in denial when I was younger. As a kid and a teenager, I was always about being tough; especially, as a teenager. I started doing drugs when I was only 13 years old and that helped mask and deal with the anxiety and depression. I also had a lot of anger issues. Anger was my defense mechanism. It was easier for me to deal with anger than emotional pain. I continued partying for 10 years, but I can proudly say I’m about to celebrate 31 years of sobriety in a few weeks. I didn’t realize when I was younger, but I actually have bipolar disorder which also explains a lot about my life. Epilepsy surgery made my mental health issues a thousand times worse and I came to realize I had bipolar disorder and began to be open and honest about all my mental health issues and eventually seeked professional help and got diagnosed with bipolar disorder and generalized anxiety disorder. This was just a few years ago. I also have OCD which comes under the umbrella of anxiety disorders. But, instead of trying to hide these issues which can be exhausting I face them and am open with other people. It feels like a tremendous weight has been lifted off my shoulders. A weight I have carried most of my life.

Sorry, this post was so long.
 
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Want to apologize if I repeated myself. I should’ve reviewed my previous post from the other day.
 
No need to appologise for long post. I’m very good at that 😉

I’ve always walked but older I got and when I moved into town I started enjoying it more. When I work now is the other part of my town, I get a bus to work but I walk home if the weathers nice and I finish early enough. In the winter when it gets darker earlier or if it’s raining I’ll get a taxi as it takes me 55 minutes to walk home.

I used to go for walks in the morning on my days off but haven’t as much but will eventually. Sometimes I’ll go to the shops but not to the parks like I used to.

I think I’ve mentioned a few times my 1st seizure was 9 months and I had tonic clonics until I was 3 1/2. Then nothing for 21 years until they returned in 2002 when I was almost 25. After that it was mainly partial seizures with the odd tonic clonic.

Brain surgery in 2011 to remove scarring on my left temporal lobe. After the surgery when I went 12 months seizure free the neurologist and I discussed taking me off one of the 2 meds I was on either Tegretol or Keppra. It took 12 months but in 2013 I came off tegretol. Not long after I started having funny episodes, a Video EEG later confirmed they were focal seizures 🙄🤦🏼‍♀️. I was put back on the Tegretol and eventually had my meds adjusted.

I am still having focal seizures, just not as many as before surgery and they’re different to before surgery
 
I had a phone appt with the neuropsychiatrist today.
It went well, just a mild adjustment in the depression med.
She’s going to send a letter to the dr do I’ll have to go see the dr to get a new script.

She mentioned she’ll speak to me in a few months
 
Yes. I find that I need some decent excercise regularly. I mentioned before, and it's true: adrenaline is a trigger when consistent, but not always. I love it too but keep it to walking I wish to do aerobic walking🚶 but ask my girlfriend to bike along side or keep up with me in case I fall. We're working towards that.
 
Yes. I find that I need some decent excercise regularly. I mentioned before, and it's true: adrenaline is a trigger when consistent, but not always. I love it too but keep it to walking I wish to do aerobic walking🚶 but ask my girlfriend to bike along side or keep up with me in case I fall. We're working towards that.
Its still summer here but my goal is once it cools down a bit ill start going for more leisure walks on my days off.

I have trouble sleeping and my neurologist and Dr have both asked before if I go for a walk in the evening after work.
I went no as soon as I get home from work i stay home. I can't remember if I told the neurologist but forgot to tell the dr that I work the other end of town so if I walk home it takes 55 mins & often I'm exhausted after work.
 
I had a teleconference with my neurologist last Monday.
The 1st thing he wanted to check was how my mental health is and how I liked their neuropsychiatrist (who is lovely).
He was really happy to hear that my moods are much better since our last appointment in October.

I mentioned my seizures have reduced heaps which he was happy to hear.
All in all he was happy with how everything is going and I speak to him again in about 4 months

Last Tuesday had to see my dr to get results of blood tests

Last Wednesday was my monthly teleconference with my psychologist.

The week before last was the only week I didn’t have something on this month 🤯
 
My Neuropsychiatrist rang me for our follow up appt on Monday afternoon.
I wasn’t expecting her to ring until later this month but she decided to ring earlier.

I was actually glad she rang as we have some stuff going on in our family so I was stressed that day and it was nice to talk to her .

In short the depression has improved and she has seen an improvement compared to our 1st appt in November.

The anxiety still is up and down (which my psychologist is also helping with) so the psychiatrist has increased the mood med.

She had me on a low dose of a sleep med which has really helped so has kept me on that. I speak to her again 3 months.

I think I’m due to speak to the neurologist next month or maybe July.
 
Good luck with that. I have suicidal ideation everyday, I've never found a way to make it stop. I wonder if it'll be worth trying anything at all.


I just last night I had two cp.s. And one TC. Woke with splitting headache. Nervous that they often come in clusters. I'm staying real close to my full-time care-giver. Staying home for the day, mostly. Even in the worst of times can't stand staying home for long. Even though I'm moving real slow, I feel that I must go to store, etc.


Oh, do you like drip coffee or espresso?
Twentyfour hours together every day. Can be hell even on a good relationship.
 
Oh, yeah, drip coffee is PALE compared to my stove-top espresso machine ( the old kind that is manually made on stove top(
 
I am not a doctor and have no advise for others well-being, I thought that, at a decent pace, the advantage pace ofa Walker is about 15-20 minutes a mile. I do at least that every day. Sometimes I go out alone: s to staying on the Main Drag/busier throughways in the believe that someone will call 911( if they don't turn a blind-eye to the "probably some deranged,, over dosed, homeless person) convolsive /groaning) no doubt these are strange times.. PS. I had been carrying, on my neck, a emergency 'lanyard' thing. The idea is that if I felt a aura or the common 'killer headache' that is a PreSeizure sign sometimes. I keep a 2mg lorazepam in a little tube on my key chain. I've never I used it with success. By the time I feel the Aura or the start of a seizure, I wonder if I could get that into my mouth, in time.
And my caregiver has given me a dose during the onset. Sometimes it seems to help. Sand off not helping right away. She uses a diazapam gel in a plastic tube/syringe gel. Instructions say, apply rectally. But the doc advised orally, tween cheek and gum.
She has become adept at straddling me and dosing in my mouth without me asperating from gel in mouth when I'm not conscious but gasping for air .
I need some alone time. Sometimes I spend hours at the public library, to hang out and read. Too be around people. Be on the city bus. I think the bus drivers are trained to deal with something like a seizure on board. So??
Walking on sidewalks, on buses. In stores.

Too complicated meters more;; I really like to put on headphones and listen to music that I feel heals me. . I often use my ancient ,Sony Walkman. Yes I have hundreds of cassettes. Some very old. I watch the world go by. It's just trying to enjoy watching life go by, the life you're not invited to. Just watching is what you get. I enjoy it too the best I can. People are absolutely crazy creatures to watch.
I keep my distance as best I can. P
 
It may be a good thing that nowadays, there are many CBD stores on the internet, but I can tell you that it makes the process of looking for reliable and high-quality products way more difficult. I was looking for CBD capsules for a long time, and thankfully, I managed to find a great store with high-quality CBD products.
 
I spoke to my neurologist last week.
My seizures are stable, I’m averaging 1 a month.
I did go 12 weeks seizure free from mid Jan to mid April which I’ve never done, but in July I had 3 seizures.
He was happy but would like to see me go 12 weeks seizure free more often.

We discussed optionwhether we keep things as are or add another med.
The new med he wanted to add is new on the market and similar to Tegretol but has stronger side effects.
He told me it was completely my decision but helped me by explaining the pros / cons of the med
Also I have decided to look for another job so we discussed that and how a new med could affect me while looking for work.

In the end we decided to stay as things were as I’m able to cope with the seizures and I speak to him in another 6 months

I was supposed to speak to the psychiatrist this month but there’s been a delay and I’m still waiting for the appt details
Hopefully soon as there is a bit I want to discuss with her
 
Hi CQ,

That's great to hear that your seizures are decreasing. The same thing happens to me during the spring and summer
but when fall and winter come then they increase a little my Epileptologist told me they are seasonal seizures that I
am having which means I have more in the fall and winter do to the lack of serotonin that time of the yr.

Personally I think you played it smart leaving your meds alone. I've changed meds so many times and nothing
worked until I started using cbd oil and vinegar with mother in it. I know it sounds crazy but the vinegar has
reduced my seizures like you wouldn't believe. I take 2 Tablespoons in the morning each day.

I think another thing that has help reduce my seizures a lot this yr. is being retired from public school. I'm
not under so much stress. I did get bored though and I work a part time job at a clothing store but it's a lot
less stressful and I enjoy it.

I wish you the best of luck and May God Bless You!

Sue
 
I would love to have my meds reduced but my neuro said that’s a definite no, I think he’s concerned if he starts lowering meds it will mess around with my seizures

My epilepsy nurse mentioned that my seizures may have reduced because they got my moods and sleep under control now. Summer is when I have sleep walking eps and I didn’t even have any of them this summer.

I like these neurologists because they always discuss everything they want to do with you, if I find it hard to make it hard a decision they explain it and give scenarios

My old neuro here in my home town used to just put me on meds then increase until it got to highest dose then switch meds. I’m on more meds but low doses

I’ve been at my job for almost 5 years, it’s always been stressful but it’s getting too much. Thus year I’ve had so much going on with my health, feels like I have appts every month, it’s crazy 🤯
 
I was due to speak to my neuropsychiatrist in August but I was on a waiting list then she went on leave.

I messaged my neuropsycholgist recently for an update, the psychiatrist was still on leave but they were able to get me a phone able with her for end of November.
 
Hi. I've been seizure free for 1.4 months. That's been somewhat average for the last year. Now it's stability. I have uncontrolled epilepsy and my life is changing so dramatically now, this can be a trigger. She and I broke up . she moved out. Took all her stuff. Now two new people are moved in. It's good stuff and that makes no difference when it's simply a massive change of address in the plenum. Scary stuff. I've not been alone,/without her for a decade by my side. So I'm scared but thrilled. She will stay my official caregiver to chime over in the o morning
 
Daylightsavings had given m me seizure p problems every year.
 
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