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Episodic Dyscontrol Syndrome

Recently we discovered I fit all the criteria for Episodic Dyscontrol Syndrome.

The rage ties into my seizures, and previously I had been calling it seizure rage. My partner did some research into this the other day, and we discovered EDS. Whilst seizure rage is less extreme anger, and not usually directed at a person, EDS is uncontrollable rage, which focuses on one person, and causes the sufferer to lash out verbally and physically.

This is me.

Usually it’s something small that triggers the episode, something that may mildly frustrate the person, but the EDS makes you fly off the handle. Because you can’t control the anger or your behaviour, but you remember it afterwards, the sufferer is often left with crippling guilt.

THIS. IS. ME!!

I’ve never been an angry or violent person. Sure, in mania I might be very irritable, but the rage and violence I experience with my seizures is unbelievable…and as a result the guilt is overwhelming. It leads to depressive episodes, and stress which causes more seizures.

Since finding an explanation for my behaviour, we both feel much better. I still feel like shit after episodes, but it’s nice to have a reason. Now if only we could find a way to manage it…

I would hope that CBD oil could reduce it, but it doesn’t seem to. CBD oil has taken my seizures from 25-35 seizures a day to 8-15, but the EDS symptoms continue…

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CBD oil blues

CBD oil has not been good to me.

CBD oil is quoted as helping EVERYTHING, from anxiety disorders, depression, epilepsy, to stroke and cancer. It’s natural, and supposedly has no side effects. It starts working within a few days to a week, and the results are amazing.

Only that hasn’t been the case for me at all.

I’ve tried A LOT of different CBD oils, various strains, strengths and from various companies. In the UK the strength of an oil is measured in %, I’ve had oils vary as much as 3-30%. The 30% was one of the least effective!!

First thing to be aware of, dosing instructions from the companies can’t be trusted!

Second thing, you can indeed have side effects from CBD oil. For me, this was migraine. I also know somebody else who experienced migraines when starting CBD oil. It also messed with my sleep depending on the dose; low dose and I slept too little, with a higher dose my sleep was deep and peaceful.

The most effective oil for me has been a full spectrum 4% CBD oil with traces of THC. The company recommended 3-12 drops a day, which did ABSOLUTELY NOTHING for me.

A friend told me most oils require a daily dose of around 30 drops, especially for seizure disorders. They are notoriously hard to treat. Sure enough we upped my dose to 18 drops a day, and saw a huge improvement.

It reduced my triggers (eg. cars going past with headlights on no longer caused seizures, in fact they barely made me feel spacey). It shortened the length of my seizures, and meant I bounced back / recovered from a seizure much faster. It also greatly reduced seizure rage, which was incredibly important to me, and I felt better in myself – more “me”!

However, after three days with less than a dozen seizures and feeling really good (for me 😉 ), I had to switch to a new CBD oil as mine had run out.

This one is an 8% CBD oil from the same company, but it’s an entirely different strain.

Because I had to switch, I fell right back down the epilepsy pit. Today has been fucking awful, I might as well have been taking nothing.

I’ve had a lot of LONG seizures, experienced a huge cluster, and was left feeling extremely physically unwell with a migraine. I haven’t noticed any triggers today, nothing that would usually cause seizures; no bright lights, missing sleep etc. It’s ridiculous.

We were going to start this oil at a low dose and gradually build it up, but fuck that I need relief!! Instead of a starting dose of 5 drops we’re doing 14, tomorrow will be 16 drops and the day after 18. We’ll see how I’m doing then.

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My life with seizures

Very bad day so not able to type much. Will copy this summary I typed elsewhere instead:

Welcome to my life with a seizure disorder.

Dozens of seizures a day and being able to do nothing to stop them; relying on your partner to stop you auto-walking, falling, or being hit by cars when having a seizure; not remembering ANY of your day (not even things you did five minutes ago); and looking like a prat in front of complete strangers, so choosing to hide away inside.

Just tried to say goodbye to [my partner and our friend], and instead my mouth said “no fucking”…which was at least humorous, but y’know’ not exactly great XD

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Aaaaagh everything is fucked

My hpomania has been building this past week.

The approach of summer is possibly my biggest trigger, and every single year as the days start getting longer and brighter, I struggle with sleep and rising mania.

I’ve gone from reduced sleep, to very little sleep, to last night 5am coming and going, and not being able to sleep.

Add this to seizures, and life is…interesting!

Today I had my most intense aura for seizures ever, followed almost instantly by seizures, big ones. I was irritable, then exhausted, then felt ill. I was okay a few hours later, now here I am feeling intensely fucking manic, which I’m 99.9% is a side effect of seizures and not actual mania….because it came out of nowhere and followed significant seizures.

Very confusing XD

AAAGH SO MUCH ENERGY WHAT DO I DO *proceeds to bounce off walls*

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No Mother’s Day for you

Anyone who has followed this blog for a while will know how my relationship with my parents upsets me, and how it always has.

My childhood was awful, and I’m confident a lot of their behaviours pushed me towards a fair chunk of my mental health issues now. Since leaving home at 18 they’ve been just as bad, but thankfully I don’t interact with them much anymore.

My parents entirely lack support for any of my issues.

It’s always me chasing after them to talk with them, making sure I phone on Mother’s Day, remember birthdays etc. They never get in touch with me to ask how I am, and for the longest time when I tried to talk about seizures I was met with silence or whistling as they watched TV. Insulting…

I am hugely pissed off right now because today is Mother’s Day.

I tried to call them first thing in the morning to wish my mum happy mother’s day. With having seizures I never know how my day’s gonna be, or how cognitive I will be in the evening, so I try do important things as soon as the day starts.

Both my calls went unanswered, so I waited until evening to get in touch again as I knew they’d have sunday lunch with my dad’s mum, and then go to my mum’s sister for a family meal in the evening to celebrate mother’s day. It’s been this way for years.

I sent my dad a message at 7pm asking when they’d be home so I could ring, and he said soon.

We exercised our dogs so they’d be tired for a call, and I shut all the curtains and sat under a blanket so my seizures would hopefully not make an appearance (light changes at dusk and the added brightness of lamps and screens are a huge trigger).

We’re waiting and waiting, doing nothing but hanging about so I can wish my mum happy mother’s day.

At 9.15pm I send my dad a message saying we have stuff to do now; my puppy on crate rest needs toileting and sorting, my dogs need letting out, feeding etc. I can’t sit under a fucking blanket any longer and my dogs can’t wait any longer…we waited two damn hours and he didn’t even let us know when he’d be ready -__-

He messaged back saying he was ‘just about to message us’ and ‘would ring in five minutes’.

Too late. Sick of your bullshit. Wish mum a happy mother’s day from me, I guess. Or not. I am beyond caring…

Someone please tell me how to cut ties with my parents, because I always go crawling back to them and I just want all this crap to stop.

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Full of seizure rage and the worst day ever

I’m so fucking pissed right now.

I have tried so many fucking things to try stop these seizures and they’re just as bad if not worse. You piece of shit CBD oil!! I’m doubling the dose, if this doesn’t help I’m pouring it down the bloody sink.

On top of that today we had to have my dog that was terminally ill PTS and my heart broke. I didn;’t even get to go to say bye as on th way to the vets I started having seizures, so thanks for that seizures.

And earlier in the day my assistance dog hurt her leg and was screaming in pain, we were stuck 30+ minutes from home and it was all shit. Thankfully we made it home, she hasn’t limped since, and after speaking with our vet she should be okay,.

So ready for this day to end I despise ABSOLUTELY DESPISE seizure rage. How is it possuible to feel this angry?!?!?!?!

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Lose control, gain control *ed trigs*

From the age of 16 – 21 I battled anorexia.

I first recovered at 20 years old, then had  a slip when I was 21. My partner helped me recover, and for several years after that I maintained a healthy weight. I was then put on a variety of psych meds and gained a lot of weight, and was never really able to lose all of it again…regardless my body image was much better and I was enjoying food, even if I did have periods where I despised the way I looked.

This past month has seen those ED thoughts raise their ugly heads, and I didn’t know why (after 6 years since my last blip) it had happened…I figured it out a few days ago, I think.

I started having a lot of seizures within the past 6 months, and I think the lack of control and helplessness has definitely pushed me towards ED thoughts (lots of control there!), and on top of that one of my dogs is very sick. Not only a huuuuge stressor, but my initial descent into disordered eating at the age of 12 (and my ‘blip’ at 21) were triggered by family members being terminally ill.

Having these thoughts fill my head again after so long is truly, truly bizarre…and, if I’m honest, extremely exciting.

I am thrilled about the control, the inevitable weight loss, and falling back into old habits is like putting on a comfortable old pair of shoes. It’s comforting, it really is.

I’m hugely massive now, so losing weight isn’t a concern, and I’ll never get anywhere near my lowest weight. I’d love to have that BMI of 15 again, but lets be honest it’s never going to happen.

Regardless I’m happy to be falling back into this, but I won’t let it get silly.

I’ve only acknowledged and acted on the the thoughts for four days so far, but I’ve been pleasantly surprised with how easy it has been so far. I’ve lost weight already and the comfort it’s brought has been great. It’s just…so so weird after not even thinking like this for many years.