2

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…

0

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.

0

What to call but ‘ugh’?

I’m at the bottom, I’ve sunk so deep I’m surrounded by despair.

Yesterday I had my first medical appt in a year and it was awful and just reminded me completely of why I stopped going. The Dr was rude, dismissive and had no appreciation for how scared I was, either about the appt or the fact I’ve started having seizures with no history of seizures. I broke down in the appt and cried uncontrollably.

Benefits have stopped two of them because they ‘thought’ we were receiving universal credit (we weren’t, we never have) and now are refusing to start. We are now receiving only 80% of our usual income.

My seizures are off the chart, I feel like shit all the time, I’m constantly close to tears.

I’m totally done with my partner and everything he does makes me angry. Twice he’s left some fucking quail eggs in an incubator in a stupid place and twice it’s been knocked off and smashed and I am just so done.

I’ve not been happy with our relationship in so long because he let some things get too far to be repairable, but we keep trying and trying and I don’t want to anymore.

The ‘kill yourself’ voice is whispering away and I’m just sat here with no energy for anything.

Funnily enough before yesterday we’d been doing pretty good. Things change easily, all it takes is one bad thing to happen and if I don’t have the stamina to resist those suicidal whispers it can happen. And that’s what nobody understands. Maybe it’s because I’ve felt like this so many times before, so now when I feel like I’m drowning I have less fight, less energy to kick up to the surface.

It’s like when people say “it’ll get better, look for the nice weather after the storm” – and I’m there thinking ‘sure, but then another even worse storm follows that…’

Bipolar is an illness that takes you round in circles, with no end in sight. Telling me “it’ll get better” doesn’t help, because there’s always another storm coming…

I am not in any danger at all. I have no strong urges or plans, they’re just whispers. These are just feelings.

0

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?!?!?!?!

0

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.

 

2

Seizures

I have had so many seizures today that I have absolutely zero memories of the day.

It’s after 6pm and I don’t remember any of it. I won’t remember writing this.

I have a few snapshot memories (not a technical term haha, just what I call them), which are still images, like photographs, of things that have happened today…and sometimes I will know what has happened without knowing / remembering. But yes, that is today.

On a walk earlier a car had its’ full beams on as it’s really foggy here. The headlights gave me a seizure.

I was having a seizure on / by the side of a road, and my boyfriend was having to manage our 13 week old puppy and my 5 month assistance dog in training, AND alert oncoming cars that I was there. All in the fog!!

And that is why I never ever go out on my own 😉

Ugh. I’ve been filling my seizure diary in for almost four weeks now! No patterns to identify.

seizurediary1

2

manic

I. CAN’T. SIT. STILL.

This has come out the blue I ahven’t been manic in so damn long and yep the last few months have been really stressful and this week has been really really stressful, but really, I haven’t been manic 8in so long so what the hell?!

This week one of our dogs was killed which was awful obviously. Yesterday I took my assistanc dog in training to a puppy obedience class, our first time, went with my partner of course…first time I’ve been actually outr in public in nmonths and months, and I guess that combined with grievbeing = manic me.

My partner’s podcasting and there has never been anything as hard as trying to hold rthis energy in