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Complaint & tattoos

PALS have said that they can’t see a referral to a neurologist on my file…which is very odd 😑

The GP sent off the referral 2-3 months ago, so…?

 My partner phoned our GP surgery this morning to ask if there was a referral on the system, but they wouldn’t talk to him…which is just UGH, because when I filled in the registration forms at the surgery, I wrote at every suitable bit that he should be added on the system, I gave consent for him to talk on my behalf, AND I checked with the GP too!!

So now we have to go into the surgery today to ask about the referral, and I’ve written a note that says ” I [name] once again give consent for my partner and carer [name] to talk both on the phone, and to Doctors, on my behalf”. I even included my old and current name and signature, because I’m changing my name on the system today too. 

It’s my birthday in a week and I’m getting two tattoos for it woop woop!

I’m so insanely excited, I haven’t been able to get any new ink in years, because of seizures and what not. I’ve planned these two tiny tattoos so well too haha 🙂

My appt is on Friday, the guy doing them is lovely and I had two of my others done with him. He doesn’t take bookings over the phone anymore as he takes a deposit due to idiots not turning up, so at first we thought we were gonna have to go elsewhere (bit too much to have to travel in to book them, then again for the tattoos). But my partner called him back to ask how long his waiting list was, and when he found out I was disabled he was so lovely and booked us in there and then, no deposit 😃

I also got some new CBD oil to try, and it arrived today. I’m so desperate for relief atm, and the NHS isn’t taking me seriously, so I’m trying a different CBD company in case it helps more. CBD Brothers is supposed to be one of the best in the UK, so fingers crossed!

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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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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?!?!?!?!