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’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.
December 5, 2025 at 1:41 PM
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...
October 27, 2025 at 7:04 PM
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 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.
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.
October 8, 2025 at 2:43 PM
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.
I have a phone appointment with my #epilepsy specialist at the end of the month, to discuss the changes with my medication this year. There has certainly been benefits with the #seizure length and recovery time, but I am really feeling drained and not myself the rest of the time.
October 8, 2025 at 12:37 PM
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
Reposted by John
Starting this Friday…
The 2025 DRQ
✨ SUBTEMBER EVENT ✨
Earn unique rewards for yourself and the community!
Keep those peepers primed for more details coming this week 👀
The 2025 DRQ
✨ SUBTEMBER EVENT ✨
Earn unique rewards for yourself and the community!
Keep those peepers primed for more details coming this week 👀
September 21, 2025 at 4:35 PM
Starting this Friday…
The 2025 DRQ
✨ SUBTEMBER EVENT ✨
Earn unique rewards for yourself and the community!
Keep those peepers primed for more details coming this week 👀
The 2025 DRQ
✨ SUBTEMBER EVENT ✨
Earn unique rewards for yourself and the community!
Keep those peepers primed for more details coming this week 👀
#RandomThought Are Witches good at spelling?
August 30, 2025 at 8:19 PM
#RandomThought Are Witches good at spelling?
#RandomThought Do you ever wake up with stupid questions/suggestions? The other day I was wondering if you are scared of crossing roads, can you reduce it to just once by only walking on the road? Not the safest idea...
August 19, 2025 at 10:01 AM
#RandomThought Do you ever wake up with stupid questions/suggestions? The other day I was wondering if you are scared of crossing roads, can you reduce it to just once by only walking on the road? Not the safest idea...
1 week after my last #seizure , and 4 1/2 months since the Cenobamate last increased, and it has got me wondering. The recovery is so much more comfortable with it on this dosage, but I am very drained for the rest of the time. People even tell me that I look tired. Will I ever get used to it?
August 12, 2025 at 12:12 PM
1 week after my last #seizure , and 4 1/2 months since the Cenobamate last increased, and it has got me wondering. The recovery is so much more comfortable with it on this dosage, but I am very drained for the rest of the time. People even tell me that I look tired. Will I ever get used to it?
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.
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
Realise I never updated after my appointment with my #epilepsy specialist 2 weeks ago. The auntie-eppies are having another dosage shuffle. The Cenobamate is staying the same, even though it has been making me exhausted. I was originally going to be coming off Lacosimide, because of its known
June 30, 2025 at 8:15 PM
Realise I never updated after my appointment with my #epilepsy specialist 2 weeks ago. The auntie-eppies are having another dosage shuffle. The Cenobamate is staying the same, even though it has been making me exhausted. I was originally going to be coming off Lacosimide, because of its known
I saw a bee on the path last night, when I was on a shoot, and there was about 10 people coming up behind me, and some flowers near by to put it on. It raised its legs as I lowered my hand, and walked onto my finger, then stung me... thankfully it didn't fully go in, & the bee was able to walk off.
June 11, 2025 at 11:33 AM
I saw a bee on the path last night, when I was on a shoot, and there was about 10 people coming up behind me, and some flowers near by to put it on. It raised its legs as I lowered my hand, and walked onto my finger, then stung me... thankfully it didn't fully go in, & the bee was able to walk off.
Yesterdays appoint with the #epilepsy nurse went well. I have another one with my specialist on the 16, that she will be at also. Meds and #VNS brain jolter are currently the same, but there could be a change with one or more of them once it happens, as things arent improving as much as I would like
June 7, 2025 at 5:01 PM
Yesterdays appoint with the #epilepsy nurse went well. I have another one with my specialist on the 16, that she will be at also. Meds and #VNS brain jolter are currently the same, but there could be a change with one or more of them once it happens, as things arent improving as much as I would like
I was going through my medical notes on my old twitter account yesterday, for my #epilepsy Nurse appointment on Friday. The last time I started convulsing (on record) was back in 2022, and July 2019-July 2020 had 2 #seizures in one day, 3 times, so it has been a while. #FunTimes
June 4, 2025 at 11:50 AM
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