Good morning everyone! It's alright here, in north western England, with the rain being on/off and cooler temperatures. I'm still picking up the pieces, after a really scary morning on Wednesday! My husband tells me I had 6, maybe 7, seizures in a row Wednesday morning! Which he then also told me of how I'd woken him up that morning: I probably had gone to the loo at around half 6 (my normal wake up time) and had my first seizure at the top of the stairs on my way back to the bedroom, and dropped into our bedroom door, which woke him up. It kind of explains why I've got pain in my right hip, and on the right side of my head 😬 it's a good thing our bedroom door doesn't have the locking thing anymore, otherwise I would have fallen down the stairs! I live in a typical UK terraced house: 2 up, 2 down, with the bathroom across the stairs from the master bedroom. The stairs are quite steep, and it's a good thing I've got a stairlift installed in the past few years, because I wouldn't have been able to walk up the stairs otherwise! Thank you Bolton At Home for making my home more accessible for me. Thank you, Adam, for being able to take 2 days off work for me ❤️ but anyway, good morning once again, and I hope you all have a wonderful day 😊
Good morning 🤗: Good morning everyone! It... - My MSAA Community
Good morning 🤗
Oh, my. You've certainly had a few days. I'm glad you didn't tumble down those steps!
I'm glad as well 😌 I did have a bit of a tumble up a step, because there's an additional step into the master bedroom, and bruises to show for it! But, a good overnight stay in hospital, and being waited on hand and foot by my husband, has definitely cheered me up!
It sounds a lot like my old house. To get from the bedroom to the bathroom, I had to go down 2 steps, across the landing, up 2 steps, and then down the hall. There was just a railing along there, open to the normal staircase leading down from the landing, and the hallway was 5 cm lower on the railing side! If I still lived there, I probably would have broken my neck by now.
I hope you have a wonderful day! I’m glad you are better from seizures! I felt your soreness I have soreness. I fell coming out of shower. It was slippery. I’d get handicap bars but I think I’m probably gonna have to move. We’ll see how the divorce plays out. Stay safe!
I have had a wonderful day so far. Nearly bedtime, and I actually feel sleepy for once, without having to take sleep aid meds! And holy sh1t! My husband, before he even became my husband, knows I've made changes to our house just so I don't have to worry about falling, so there's grab rails in the bath/shower, and more stuff I can use to pull myself up like the drop bar beside the toilet. I'm definitely rooting for you in the divorce, and if you do have to move, I wish you all the best and are able to find a home that's fit for you ❤️ I am trying to stay safe! I rarely go out by myself now, so staying safe is the best I can do ❤️ stay safe yourself!
thank you & thank you for rooting for me :). I know I am going to have to have grab bars. I will find them & my way some day :). I’m so happy you found yours :). Thank you again for everything!
It makes sense to back up people we want to win, don't you agree? 😊 And that's a brilliant outlook, always looking for a positive no matter what sh1t life throws your way! I'm happy my husband has took on his role as my "carer," and proved his mum wrong! She told me, on my hen party, that she didn't think he'd step up and be my superhero. We started dating when I was still fit and able, with only a CIS diagnosis of MS, and a definite diagnosis of simple partial epilepsy. But, my body decided to destroy more of the myelin and started giving me generalised seizures in 2020, so that was fun teaching him what to do. He watched me help with his best friend once, before I started the generalised seizures. I was once a student nurse, and us 3 had gone for some drinks one night, and on our walk home, the best friend had a generalised seizure. I immediately switched from "Drunk Charlotte," to "Emergency Charlotte," so quickly it scared my (then) fiance. He learned a lot from just that night, and I don't think he'll ever forget it 🤣
lol drunk Charlotte and drunk nellie would’ve been fun together. Lol. I am happy that you have a good husband! A real man! Lol. I very disappointed in my male (not a real man imo). I told him just because you have the equipment doesn’t make him. Man. A male sure. But a man no.
Yes. I totally agree and thank you!
Wow! That sounds like a crazy way to start the morning.. I really hope the rest of your week is a lot less eventful.. so glad you avoided the steps and didn’t get too banged up with the falls
Just caught the 1 step (UK terraced houses, you go up the stairs to get to the "landing," and then up another step to get to the master bedroom or the bathroom). I did get a little banged up, and the husband pointed out the bruises when he gave me a wash Thursday night 😬 but, I'll live 😅
What a horrible Wednesday morning for both you and your husband. I hope your neurologist knows about your frequent seizures. If not, you need to get to see him ASAP because that is nothing to fool with. Sometimes they can be quite dangerous. Don't fool around and take care of yourself. Fancy59.
He knows about them, and how they've changed from the simple partial temporal lobe seizures to the generalised ones now 🙃 the fact that they've changed was enough evidence for him to get me started on ocrevus for my RRMS in the first place. I understand how dangerous they can be, because my uncle (mum's brother) gas had epilepsy all his life, my young 2nd cousin (mum's cousin's son) has just been diagnosed with epilepsy, and my husband's best friend has had epilepsy all his life too. It's scary to watch, and even more scary when you don't know what to do. I am so thankful husband remembered how to get someone into the recovery position from when his best friend had a seizure when we were walking home from the pub one night. I think the fact I told him how I remember how to get someone into recovery: "please miss, I can't hear you, and I need a wee!" I'm looking at getting a neurologist closer to my house. I no longer live under the same health trust as my neuro-team, and I'd rather explain everything to a neuro-team that covers where I live, than have to get patient transport to transport me 30/40 minutes by car away. Just waiting on people sorting their patient lists out now 🙄
I watch a lot of A and E on tv and amazing the houses in the UK as compared to the US. Makes me love my one level house with no steps 🙏👍🏼😉
Lucky!!! Our 2 bed terraced house cost us £95k, and I'm sure if we were to get a bungalow, it'd cost us £200k 🤔 I can put up with it for the time being 😅
I just read an article regarding vagus nerve stimulation for seizures (and other things) in Brain &Life magazine that you mightfind interesting.
Not sure, but you might be able to access it through their site:
myBLsub.com
Unfortunately, I can't access it through there because I don't live in the US, however if you could tell me the article title and the authors I'll be able to look it up 🤗
"Touching A Nerve" by Stacey Colino.
You might be able to find info under VSN or Vagus Nerve Stimulation. Good luck! 
Thank you for this ❤️
You're welcome!
I hope you were able to find it.
I was able to find some stuff from her regarding the vagus nerve stimulator, but since I'm going to bed now, I'll have a deeper look in the morning. Thabk you once again! 🫂❤️
Your welcome again 
Sorry about your seizures thankfully you missed the stairs
Definitely! I'm thankful we don't have the thing that keeps the door closed on our bedroom door, because I definitely fell forward (or backwards, judging by the bruises on my back), which woke my husband up! I don't remember waking up to go to the toilet that morning. I don't remember anything until I woke up in hospital that afternoon! Thank fuck the hubby was by my side, to give me the low-down on what happened and why I was in hospital in the first place. He packed an overnight bag, my manual wheelchair, a bottle of pop, and a pack of cigarettes (because I definitely needed them. He got my normal brand!) He also packed my prescription meds, as well as a sleeve of prednisolone that I had to explain to doctors I take PRN! He's my guardian angel, and I'm glad we finally married back in May! We've been dating since May 2015! ❤️ Adam Hargreaves of Atherton, UK. You probably won't see this through normal channels, but you are my White Knight ❤️
Are you on any meds to stabilize the seizures? I'm on Keppra and it has worked really well for me.
I am. Been on lamotrigine since 2014, and also on tegretol since 2021.
I'm on Tegretol, too. My Neuro tried several different meds and it was the one that worked. I have been taking the Tegretol for at least 7-8 years now, with NO side effects, and NO seizures. I am so glad that you weren't hurt worse!
I got started on tegretol back in April 2021, on top of the lamotrigine. Had a couple of lone seizures since then, but I've definitely had a proper hospitalising spate of seizures the other week! Can I remember anything from before, on that day? Nope 😕 I'm happy I didn't get hurt worse too!
I hope you and your Dr. can find something that will l prevent the seizures. I had no idea that epilepsy could develop because of the MS, until I started having seizures. Take care of yourself and have a safe and blessed evening!
I don't think my 1st neurologist ever came across someone who's 1st MS symptom was having seizures until he met me! I started having simple partials when I was 19, arguing with my GP to get me referred to a neurologist, actually having a bad day in Feb 2014 where I'd had one at my normal waking up time, mum took me to A&E, as per NHS Symptom Checker website, where I had another one as the triage nurse was doing a pupil reaction test. That kick started everything off (finally)! Got given a CIS diagnosis, as well as a definite diagnosis of simple partial, temporal lobe epilepsy a couple of weeks before my 20th birthday. Was given my clinically definite diagnosis of RRMS a year later with definite RRMS symptoms and a new mri. All was well and good until I had a generalised seizure in late 2020. My husband knew what to do, and how to get me into the recovery position, because he remembered me helping his friend on a walk home from the pub one night. Husband had heard something drop, when we parted ways, turned back, saw his friend seizing, alerted me, and rather than getting worried, I became "emergency Charlotte" in an instant. Took control of the situation, told husband to start a timer on his phone whilst I got friend into the recovery position, and explained why I was doing so. Husband's definitely kept that close to heart, and I think I don't have seizures unless he's home, where I feel "safe" enough to have them.
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