John
@jrh2385.bsky.social
Middle aged, volunteer photographer, epilepsy warrior, cyborg, veggie, gamer, dog person. JRH2385, SW-7284-4924-6113, steam 152532536
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
December 11, 2025 at 4:29 PM
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.
October 21, 2025 at 7:22 PM
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.
23 days without a #seizure isn’t the best, but I have been very busy, physically and mentally for the last few days. I kinda knew it was coming earlier today, when taking Meg for a check up, and my head went funny a few times. Let’s hope that next time is a little longer? #Epilepsy
September 26, 2025 at 10:05 PM
30 days since my last #seizure is alright, unfortunately I was on my way to a shoot in the taxi when it happened, so I wasn’t able to start it. It was unexpected, and I remember swiping the VNS magnet not long before it happened, but it must not have worked.
August 5, 2025 at 5:28 PM
30 days since my last #seizure is alright, unfortunately I was on my way to a shoot in the taxi when it happened, so I wasn’t able to start it. It was unexpected, and I remember swiping the VNS magnet not long before it happened, but it must not have worked.
I am having the day off, and there will be a few days delay before I can start working on the pictures. On the plus side, Meg has been keeping a watch on me. Dogs are the best. #epilepsy
July 6, 2025 at 1:37 PM
I am having the day off, and there will be a few days delay before I can start working on the pictures. On the plus side, Meg has been keeping a watch on me. Dogs are the best. #epilepsy
My #seizure calendar was reset yesterday, at the end of a long photo shoot. Lots of people had said that I looked tired, which I know is a side effect of the higher Cenobamate, but I powered through, because I am used to it and was determined to finish. Is stubbornness an issue, or is it the need
July 6, 2025 at 1:37 PM
My #seizure calendar was reset yesterday, at the end of a long photo shoot. Lots of people had said that I looked tired, which I know is a side effect of the higher Cenobamate, but I powered through, because I am used to it and was determined to finish. Is stubbornness an issue, or is it the need
Quite scary, but I had another #seizure about an hour ago, when I was having a sleep. My parents told me that I was starting to go into full convulsions, which I haven’t had for many years. I have no recollection of it. Thankfully, I have an appointment with my #epilepsy nurse on Friday.
June 2, 2025 at 5:00 PM
I made it to 32 days, which is slightly better than my last #seizure. I don't know what could have caused this one, but thankfully, it wasn't too long and it happened after I got out of the shower... I had a small feeling that something was going to happen for last few days. #epilepsy
June 2, 2025 at 1:29 PM
30 days without a #seizure isn’t too bad, it’s certainly better than I have been by a few days. I have noticed a decline with clumsy mistakes. But this is after a very busy few weeks. It happened when I was trying to get to sleep, & the last thing I remember was reaching for the VNS magnet #epilepsy
May 1, 2025 at 11:46 AM
30 days without a #seizure isn’t too bad, it’s certainly better than I have been by a few days. I have noticed a decline with clumsy mistakes. But this is after a very busy few weeks. It happened when I was trying to get to sleep, & the last thing I remember was reaching for the VNS magnet #epilepsy
My #epilepsy got the better of me again earlier today, unfortunately it was less than 1/2 the time, for the last #seizure. I was able to sleep it off for a bit though which helped. Looking back, I was very tired and had a headache for much of yesterday, so I should have seen it coming?
April 1, 2025 at 6:48 PM
The signed Hundreds of Beavers poster from last night is framed and on the wall, along with the merch.
March 29, 2025 at 8:08 PM
The signed Hundreds of Beavers poster from last night is framed and on the wall, along with the merch.
I’ve just got back from seeing #HundredsOfBeavers on the big screen at the Tyneside Cinema, it was amazing! I also got to meet Ryland Brickson Cole Tews, really nice guy. I made sure to get my copies of the film & Lake Michigan Monster signed when I was there. Highly recommend if you get the chance.
March 28, 2025 at 11:32 PM
I’ve just got back from seeing #HundredsOfBeavers on the big screen at the Tyneside Cinema, it was amazing! I also got to meet Ryland Brickson Cole Tews, really nice guy. I made sure to get my copies of the film & Lake Michigan Monster signed when I was there. Highly recommend if you get the chance.
The #epilepsy has got the better of me again, after a 6 week break. I haven’t been feeling 100% for little over a week, and I have been exhausted all day. The meds will be changing again tomorrow, so I know it wasn’t a result of that. The length of the gap is promising. #seizure
March 12, 2025 at 12:47 PM
I delayed it for a few weeks to make ordering a little easier, but the Cenobamate has gone up to 125mg a day. Lacosimide is still on 150mg AM, 100mg PM, and Lamotrigine is 200mg AM/PM. I didn’t have the best side effects last time it went up so the next few weeks will be #FunTimes #epilepsy.
February 17, 2025 at 7:38 PM
I’ve found a notebook from the 2nd year of my Photography Degree. No idea which project this was for? 🤣
February 14, 2025 at 2:39 PM
I’ve found a notebook from the 2nd year of my Photography Degree. No idea which project this was for? 🤣
Trying to contact Ryman Stationery, after a delivery problem with Yodel, & I think their bot is under the control of the Blue Meanies, from the #Beatles #YellowSubmarine ...
February 11, 2025 at 5:57 PM
Trying to contact Ryman Stationery, after a delivery problem with Yodel, & I think their bot is under the control of the Blue Meanies, from the #Beatles #YellowSubmarine ...
After working out how many tablet I have, I think I will delay it by 2 weeks (1 sheet) so ordering in the future will be easier to keep on top of
February 3, 2025 at 12:58 PM
After working out how many tablet I have, I think I will delay it by 2 weeks (1 sheet) so ordering in the future will be easier to keep on top of
I’m starting the next phase of my #epilepsy medication change tonight, and the Cenobamate is going up to 125mg. I wasn’t feeling the best for the first few weeks of the last change, and I would have several auras/absences a day, but that has settled down. Lets see how the next few weeks go #FunTimes
February 3, 2025 at 12:18 PM
I’m starting the next phase of my #epilepsy medication change tonight, and the Cenobamate is going up to 125mg. I wasn’t feeling the best for the first few weeks of the last change, and I would have several auras/absences a day, but that has settled down. Lets see how the next few weeks go #FunTimes