Trying to decide whether to start meds or not

[Artistmama]

Hi,

I'm struggling to decide what to do and hoped someone might be able to help me here.

I started having 'nightmares' when I was a teenager (I think), where I would wake up and still be 'dreaming'. I'd see the room around me, but also whatever 'people' or spiders, or whatever in the room too. Sometimes I'd smell stuff too. I could get up and walk around, but the dream wouldn't stop until I switched on the light. One time I almost made it out of the front door.

After I had a baby, I had a few nightmares where I'd be searching the bed for her, panicking that I'd accidentally left her in the bed with us, throwing the covers around. Those dreams stopped after a few weeks.

Around 3 years later, I started having weird episodes in the daytime, usually the morning. It's like dreaming with my eyes open. Very similar to the nightmares, except they're never frightening. They're really compelling, and I feel like I've experienced the scenario before - it feels so familiar. I can talk and function when this happens. I can see the real world, but I'm also in the dream - 50 / 50. It's not like a memory or fantasy. I usually feel really tired and disoriented afterwards, and almost always have to run to the toilet with diarrhea.

The first neurologist I saw told me they might be simple partials. He did an MRI, an EEG, and a sleep deprived EEG. The EEG showed some spikes, but he didn't seem overly concerned. The sleep deprived didn't show anything, neither did the MRI.

For the first year (2013) I had them twice a month, usually on consecutive days. Then they started happening less frequently - I was smoking a fair bit more weed for stress and pain relief, so I'm thinking that helped a bit.

In 2014 I was diagnosed with Endometriosis, and had a laproscopy to try and help with that. It didn't work - hence the weed. I can't take painkillers without aggravating my stomach.

In Jan 2015, I had a radical hysterectomy and oophorectomy. 3 weeks later I was diagnosed with breast cancer. I had a full mastectomy, but didn't have to have radiation or chemo, thank god. I tried taking the aromatase inhibitors the oncologist wanted me to, but the depression and bone pain was awful. I decided since I'd had my ovaries removed that I'd take my chances without meds. According to my charts, they only provided me with an additional 2-3% extra against recurrence.

Anyway, here's how this becomes relevant to epilepsy - I had assumed that my depression had triggered 'episodes' in the past, but I only had 7 episodes in 2015, the most stressful year of my life.

I've since had another MRI, because the front of my mouth started to go numb, and it was spreading. The Dr. found a small abnormality in my brain, that doesn't concern him. But then yesterday he reviewed it again and noticed some asymmetry in my temporal lobes. He wants to do another EEG next week.

I recently had a new kind of episode, with flashing lights. I thought it was my eyes, but the eye dr. said it was my brain.

My neuro wants me to start taking meds for the seizures, but I'm very concerned about the side effects - specifically the risk of suicide. I already have suicidal thoughts from time to time. I never come close to acting on them (although I did when I was younger). I manage my depression pretty well with psychotherapy, mindfulness/ meditation, exercise and painting. I've taken anti-depressants before, and although they gave me the break i needed at that time, I couldn't paint at all - they completely killed my hand/eye coordination, inspiration, everything. I'm an art instructor and full time artist. This was a bad time for me.

However, I also have my daughter and husband to think about - I have nightmares about having a Grand Mal (I've never had one before) at the wheel of the car, and killing them. Obviously this is my greatest concern. They are everything to me.

I've been using CBD oil for a while now, and it seems that if I take it religiously, I do better. I've just recently got my card, and now have a reliable source for it. In the past I might have to wait a week or two between bottles. I can feel it if I haven't used the oil for a few days, I start to feel that 'dreamy' sensation creeping in.

I feel like I'm playing Russian Roulette with my daughter. On the one hand I'm driving with her, not knowing if any of these simple partials might evolve into a grand mal. On the other, I know from my past experience with meds of any kind (except CBD) that my risk of having to check myself into the loony bin is also a real risk if I start epilepsy meds.

We live in an area where it would be difficult not to drive, especially in the winter. But maybe that's just what I need to do.

Any advice from this community would be awesome. Thanks.

 

[opusde1988]

Welcome Artistmama! I think you found perfect site for answers, there is a wealth of knowledge from the users here. Glad you are here!

 

[valeriedl]

If you'd like try taking meds talk about them with your dr and see which ones/one you might think would be best. If you don't like them you can always stop. I'm not sure if epilepsy meds can cause depression but I have read that there are some that people take them who have depression that help them with it.

Are you the one driving or is it your daughter? It's not safe to be driving when you have epilepsy and are actively having seizures. There's a good possibility that you could have one while you're driving and wreck the car. Most of the time your license is taken away and you can't drive again until you go 6 months to a year with out having a seizure before you are able to get it back.

This is a good website to get advice about things, I know I have.

It's nice to meet you!

 

[Artistmama]

Thanks for your response reply, I'm seeing him next week

 

[seagull]

ohhhhhhhhh this familia I had me lady bits removed years ago and breast cancer 8yrs ago but with radiotherapy.My e was diagnosed after baby born but I know had it longer because a boink on nut aswel.
I used get terrified I put her down forget where I put her..i also could not take cancer meds they made me feel like sh1t depressed the worse menopause I do take hrt although it not adviced.Also the horror of spiders in bedroom yes I was smoker gave it up to little to late
It sounds like you got deja vu which common with e.
Afraid doctors often shrug e off it common for them.
As for meds I can't advice only you know that...I unable get this cannabis oil but I read good things about it so I on tramadol contra indicated with e but only thing that works.you between devil and hard place server pain makes everything worse but pain relief don't help other things

 

[Artistmama]

Just sent you a private message, Seagull xx

 

[Shutterbabe]

Artistmama: Thank you for sharing your story. I have been successfully using CBD's for 4 years as a companion therapy with my traditional anticonvulsants. My seizures are nocturnal. I had to experiment to find the right CBD delivery system. Tried the drops but they hurt my stomach...... I am very cautious with all modalities as my body is ultra sensitive. .... I need very little MMJ and use it only when I am homebound. I did well on certain flower CBD's via vaping. I am presently using a high quality CBD chocolate that was recommended by my MMJ dispensary. It makes me a bit sleepy and very relaxed. I am not fond of edibles because it is difficult to find the right dose. I started out with a pinch of the chocolate and added a little more as it took over an hour to be effective. They are all very expensive so that does make experimentation a financial burden for me. Sending you every good wish for well being. Please come back and let us know how you are doing. Peace and Understanding

 

[seagull]

just sent you two pm

ihave you tried binal sounds when meditate some sounds like cat dying others not bad help you sleep.They all based on musical note A.
you have been through a lot in short time,Have you thought of hrt like me you had surgical menopause that quite a shock on body.i felt awful after lady bits whacked out but within week of hrt it settled down.
you artist do you do that computer art name totally gone from brain I got a lot of help doing that your peers give judgment once a month.I got couple of app that got weird symbols you use them.i find that very soothing.MY peers have yet to give me any stars but not reason I do it.For people who think bad at art try art apps you be surprised folks you all be better than think
I know can have this altered stated of concoiseness(sorry spelling)where you appear be ok even say hello to people or more often blank them but you have no or little memory of it.
when think about it so many bits of brain could have legion anywhere and we all experience something different although in my case it much same as other people plain common same auras sz head aches migraines and it migraines most disabling thing which many on here would agree with.
There another person on here that finds the aura and head aches crippling as do i
.The sort of worries you getting I would say many have I have I sure most people from time to time get the wobbles about crashing the car as far as grand mal when driving it could happen to anyone as stroke heart attack some things are out of your hands,but epilepsy one of them conditions you have certain control over and we proberly safest drivers because we aware and on meds.THE MEDS can be hit or miss what helps one may not another I taken many over the years but been on lamatrigne for many years and that suits me,maybe should give it some thought the meds for me been no side effects.
I have had depression but the meds made my e worse so came off them plus I think I just get seriously pissed off rather than depression. llfe is like Russian roulette nobody knows what going to happen when walk out of door I know that cliché but it true.EVERY bit life something to worry about when got kids my son adult and I always got sickning worry he going have car accident or get mugged I think it part of human condition and many people are liers if don't have those odd thought
jUST A THOUGHT but if doc has diagnosed epilepsy are you allowed to drive I had wait two years before allowed to but I don't drive anymore reflex to slow eysesight not good

 

[Artistmama]

Hi Shutterbabe,

Thanks for sharing I also have a very sensitive stomach, but the tinctures seem to sit well for me. They only contain olive oil. Tastes awful, but if you put them in tea its ok. I noticed that I got a bit high using Wonder Oil 25:1 sublingually with no food. So I only used it at night at home. I then switched to Care by Design spray, 18:1, and I had a seizure on that - I don't think I was using enough. They are all so expensive. I recently got my Medical MJ card, and started using a home delivery service (hallelujah) and they sell me a different brand, Fiddler's Green 20:1. I've been using it for about 3 weeks now, and I make sure I put it in tea with milk (I think the fat might be helping me not to get high). So far so good. I haven't had a siezure yet, but sometimes I can go a months without one, so it will be hard to guage. I'm keeping notes now (finally getting organised), so I'll keep you posted. I take a 5 drops twice a day, so that's 10 mg. I read that people with E have been given 300 - 400mg per day, which is huge! I can't imagine taking that much (or affording that much).

On a side note, I decided today to have my 6 yr old daughter take the school bus until I get this thing sorted out. The Dr. hasn't made any moves to have my drivers license revoked (yet), but I felt like I had to do something to improve our odds. It's going to be incredibly hard living where we do if I do lose my license, but I'll figure it out if that's what it comes to. I might just get really fit biking everywhere

 

[Cint]

Hi,

I'm struggling to decide what to do and hoped someone might be able to help me here.

I started having 'nightmares' when I was a teenager (I think), where I would wake up and still be 'dreaming'. I'd see the room around me, but also whatever 'people' or spiders, or whatever in the room too. Sometimes I'd smell stuff too. I could get up and walk around, but the dream wouldn't stop until I switched on the light. One time I almost made it out of the front door.

After I had a baby, I had a few nightmares where I'd be searching the bed for her, panicking that I'd accidentally left her in the bed with us, throwing the covers around. Those dreams stopped after a few weeks.

Around 3 years later, I started having weird episodes in the daytime, usually the morning. It's like dreaming with my eyes open. Very similar to the nightmares, except they're never frightening. They're really compelling, and I feel like I've experienced the scenario before - it feels so familiar. I can talk and function when this happens. I can see the real world, but I'm also in the dream - 50 / 50. It's not like a memory or fantasy. I usually feel really tired and disoriented afterwards, and almost always have to run to the toilet with diarrhea.

The first neurologist I saw told me they might be simple partials. He did an MRI, an EEG, and a sleep deprived EEG. The EEG showed some spikes, but he didn't seem overly concerned. The sleep deprived didn't show anything, neither did the MRI.

These DO sound like Simple Partial seizures, especially the ones where you "smell" something.

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
Sensory seizures:
These cause changes in any one of the senses.
People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness.
Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space.

In Jan 2015, I had a radical hysterectomy and oophorectomy. 3 weeks later I was diagnosed with breast cancer. I had a full mastectomy, but didn't have to have radiation or chemo, thank god. I tried taking the aromatase inhibitors the oncologist wanted me to, but the depression and bone pain was awful. I decided since I'd had my ovaries removed that I'd take my chances without meds. According to my charts, they only provided me with an additional 2-3% extra against recurrence.

Anyway, here's how this becomes relevant to epilepsy - I had assumed that my depression had triggered 'episodes' in the past, but I only had 7 episodes in 2015, the most stressful year of my life.

Depression often times goes hand in hand with E. I've suffered from E for over 30 years and have suffered severe depression as well. Some of the AEDs can make the depression worse as can the seizure(s), depending on where they originate in the brain. My seizures originate in the Left Temporal lobe, the feeling and sensory lobe. I was seeing a neuropsychiatrist who knew about the brain/emotions/etc.

Plus with females, hormones do play a huge role in E.

I've since had another MRI, because the front of my mouth started to go numb, and it was spreading. The Dr. found a small abnormality in my brain, that doesn't concern him. But then yesterday he reviewed it again and noticed some asymmetry in my temporal lobes. He wants to do another EEG next week.

I recently had a new kind of episode, with flashing lights. I thought it was my eyes, but the eye dr. said it was my brain.

My neuro wants me to start taking meds for the seizures, but I'm very concerned about the side effects - specifically the risk of suicide. I already have suicidal thoughts from time to time. I never come close to acting on them (although I did when I was younger). I manage my depression pretty well with psychotherapy, mindfulness/ meditation, exercise and painting. I've taken anti-depressants before, and although they gave me the break i needed at that time, I couldn't paint at all - they completely killed my hand/eye coordination, inspiration, everything. I'm an art instructor and full time artist. This was a bad time for me.

However, I also have my daughter and husband to think about - I have nightmares about having a Grand Mal (I've never had one before) at the wheel of the car, and killing them. Obviously this is my greatest concern. They are everything to me.

Here is where you NEED to STOP and think about others, besides your daughter and husband. Right now you may only be having a nightmare about a Tonic/Clonic seizure. But if you continue down this path of not taking anything for the seizure, it could definitely, slowly turn into a TC. Been there, done that. I had three car accidents and fortunately did not hurt anyone but myself. I did learn from those and will NEVER DRIVE AGAIN! I would kill myself if I ever were in a car accident and killed someone else!!

I have two grown children now. But as they were growing up, I didn't drive and am now very grateful that I didn't. We found a way. At the time we lived 1000 miles away from family, so I had to rely on neighbors and friends for rides. It can be done.

I feel like I'm playing Russian Roulette with my daughter. On the one hand I'm driving with her, not knowing if any of these simple partials might evolve into a grand mal. On the other, I know from my past experience with meds of any kind (except CBD) that my risk of having to check myself into the loony bin is also a real risk if I start epilepsy meds.

We live in an area where it would be difficult not to drive, especially in the winter. But maybe that's just what I need to do.

I live in Colorado and usually in the winter (not this year, tho) it is cold and snowy. Up in the mountains it is very cold. But I ride the bus and Light Rail to get to my destination. Better be safe than sorry

 

[Artistmama]

Hey Cint - thanks so much for your post. You're right about the driving. It's a bitter pill, but you're right. I'd do the same if I killed someone else too.

I just ordered a bike hitch so I can tow her bike to the bus stop. Working on figuring everything else right now.

 

[Shutterbabe]

Hey There, Artistmama:

It sounds like you are on the right path. Every product I have used has a different result. It was the same trial and error with anticonvulsants. It took many years to find the right combination.

Having your daughter take the school bus might alleviate some stress. Driving is a big issue for me. I live in a city that offers limited public transport. I am not able to drive at night but losing my day privileges would create a difficult life scenario. My balance has been affected by E. so biking is no longer an option. Good vibes to you.

 

[seagull]

I coming from country near on impossible to get those tinctures and oils I tried.

 

[valeriedl]

Having your daughter take the school bus might alleviate some stress. Driving is a big issue for me. I live in a city that offers limited public transport. I am not able to drive at night but losing my day privileges would create a difficult life scenario. My balance has been affected by E. so biking is no longer an option. Good vibes to you.

I live in a place with very limited public transportation. The closest bus stop is about 5 miles away and it doesn't go everywhere that I'd need to go. Biking places really isn't much of an option either because I live out in the country and there are no parts of the road to bike on, it's really not safe to ride on the road because of the way the cars drive, I'd be riding in the dirt. It also snows here in the winter so it would be really hard to bike places then. To be honest with you to I don't think I'd feel safe biking because my seizures usually come on with no warning so who knows what might happen?

Luckily I have family that lives close by that can take me places but I have to work around their schedule, I can't just hop in the car and go somewhere when I want to. It's very frustrating not being able to drive but it is the safest thing for me and everyone else out there.

 

[seagull]

I got feeling it prison sentence in uk If drive knowingly with e and you made conscious decision not take Meds which is your right do so but be careful if hint of cannabis in blood system They through book away.
I believe in uk you have go two years on medication and all ok then get license back.this What doc told me..
Don't want be horrible but if you had accident chances your family be ok but would a child who just walk in front of you be ok child equally loved like you do with your family..Guy in uk killed six members of one family because he failed declare his e all be it dust cart but going slow.It very sad case he wanted to work support family and now he in prison and he is good man not criminal but the family that lost six memembers do not feel same.
It did result in doc having test people more before taking jobs like that.
I honestly think serious chat with doc