John

A few awkward moments, as I got there on time today and discovered there was a warm up lap… in the past I was a little late and was told to follow the people in front for 3 laps. I also got distracted by a dog, took a wrong turn at the end of the 3rd lap, saw the finish line & had to turn around 😅

3rd #parkrun done. Not my best time, but not my worst either. I was flagging a bit, so it was more of a brisk walk at times, rather than a run. Hopefully they will be more than once a month in the future?

3 1/2 weeks isn’t the best but I’m accepting it as the new average between #seizures. I’ve been told that it was a non convulsive, but I briefly went ridged once it started, as if I was going to #convulse. There was no warning, and no decline. I have had a few bad nights sleep, so could that be why?

Although I had a positive result today, MANY things have been accidentally broken or made worse in the past while recovering, as my head isn’t always in tune & I make clumsy mistakes. Replays of final fantasy games, or Minecraft/subnautica always helped to keep my Zombiefied mind distracted 😅

I have a habit of doing stupid things when I am recovering from a #seizure. Today I found myself dismantling a heavily jammed up vacuum where the filter had disappeared. Thankfully it now works, and the battery was depleted before. This is why I play games, to keep me from causing trouble 😅

My first #seizure of the year happened earlier today, and 37 days is quite impressive! This is something that has certainly been building for a while. I had a decline just over a week ago (daily headaches & mistakes) & my #VNS stopped it, I was also a bit scared doing #parkrun yesterday. #epilepsy

Not sure how to change it? I started the workout timer a little early, as I was doing the warmup walk on my way to the park

Il keep that in mind! 😂Thanks

2nd #ParkRun done. I haven’t been feeling 100% and almost quit a few times before completing the 1st lap. So glad I continued. 7 minutes better than last time.
Reminder! don’t do it wearing thick jacket, unless it is snowing…

I just realised after my last post, that I didn't complete & post my 2025 #Epilepsy #Seizure diary. #FunTimes

I hope I didn’t jinx myself by posting that, as it has been just over 4 weeks, so I am due for one 🤣

The last week has been a bit scary with the #epilepsy, as I have felt myself on a long decline. I’m pretty sure that the #VNS stopped a #seizure happening yesterday, it went full blast when I felt myself phaseout and I was back. I have been a little disoriented since, but not as bad as I was before.

Unfortunate moment earlier, when an orange reminded me what time it was… I had blanked that song from my mind many years ago.

not just my legs, my abdomen also 😅 I had to roll out of bed 🤦

I finally gave #parkrun a go, after my #epilepsy nurse recommended it to get more active. First time running after many years, because I would occasionally have (hopefully unrelated) #seizures when doing it solo, so being in a controlled environment is better. I will hopefully keep it up. (3 laps)

Does anyone feel that their daily events influence their #dreams? Yesterday, my mum was looking for blu tack / alternative product to put Christmas cards up, and last night I dreamt that I went to Waterstones & W.H. Smiths in Newcastle to buy some. Fun dream...

Nope. My local group disbanded about 10 years ago. However, a new local one is getting made, there are only a handful of people on the Facebook, and they are looking for a place to meet up. Early days… No idea if there were any active since I last attended one (18 years ago?).

I have also just used a screenshot of it as a record of my seizures, and the time that passed.

Today was #seizure calendar reset day. I have had a few busy weeks, so it no doubt contributed. I got to 31 days which is very good, unfortunately it was in the dentist waiting room, so it was witnessed by several people. The dentist knew about the #VNS, which may have made it shorter? #epilepsy

Epilepsy journal. It keeps a record of everything, including seizures type, length, triggers, activity etc. it also creates a record of how many you have had over a period of time

I’ve just had an appointment with my #epilepsy nurse for the update and #VNS check. She mentioned something that I have been worried about for a long time, and that is I really don’t get out as much as I would like, because of the fear I have. I have been given the name of a support group also.

Stress, high temperatures, fatigue, and some smells (particularly lavender & some burning smells). I remember somebody abruptly disputing lavender, saying that "lavender does not cause 'your' seizures, lavender is very calming"... I guess that she needed some herself 😅

On that note, could trying to be active, while still being on a higher dosage be the thing that caused the switch to flip? I will need to wait and see…

There was a notable change today with the recovery, and how I felt afterwards, since the Cenobamate was decreased. I feel a lot more shaken than had before this, and the headaches have came back. It is strange, but I feel worth it, if it makes me feel more ‘able’ the rest of the time

Yesterday was #seizure calendar reset day, and 19 days is pretty bad! I had been busy for 4 days, almost non stop, so I think that it could be a trigger? I was with friends when it happened in public, so thankfully they were able to keep me safe. #epilepsy

After being on a higher dosage for around 7 months, my Cenobamate is going down. Although there has been positives, it can be really difficult to cope with the fatigue that comes with it. I will not be going off it, but one of my others may be increasing? The waiting game of #epilepsy medication...

I would like it if it is reduced to a past dosage (currently at 150mg pm) and not taken off it. I have been at this since the end of March, so I have given it a fair chance, and know what my limit is. My mum made me make a voice recording, just after I came aware, which I may send to the specialist?

Im not sure if the lack of energy is also something contributing to the seizures? The recovery is so much more comfortable on them. Being able to type this clearly within a day without throbbing head pain and multiple drafts would have been impossible, but is it worth it if I am can’t do anything?

I feel like there has been a long decline to this #seizure & I have been drained for a while. I sent an email to my specialist this morning with a diary of the last 2 years with seizures and med changes. As much as Cenobamate has helped, daily life is a struggle. I have no energy, I am just drained.

Do you know if people can become resistant to #seizure medication, @brainablaze.bsky.social ? I have been going through my medical records in preparation for an appointment with my specialist & realised I have been taking one for 22 years & Im sure my seizures are more frequent than they used to be.