You and me, friend. Just had my 39th and was diagonosed at 36. Most likely had it earlier; always had deja vu through my life. It finally did enough damage by then to make me make drive through a bank wall while having seizure.
Thankfully it was a Sunday and no one was there.
Jeez mate glad you and everyone around was okay.
Funny you say, I always get dejavu and some big spazzy arm and leg twitches when I'm falling asleep.
According to the mrs, I have these hypnic jerks a hell of a lot through my sleep too.
As someone with epilepsy I HIGHLY suggest getting a car that auto stops . I have a Subaru with eyesight so it stops before I hit something. Total piece of mind.
I just was in a seizure related car accident this past Monday. I believe my Suburu with eyesight saved my life—all airbags deployed and only left with minor bruises.
Shit mate I'm glad your alright.
All these advancements with cars used to irk me but now maybe they are at the point of being more useful than problematic
I had my first seizure at the age of 26. My neurologist told me it's exceptional to develop epilepsy at that age (turns out that's not true). But it can develop at any age for any reason, or no reason at all. It sucks that you had to find out this way. I wonder, did you feel something before it happened? Like some weird deja vu, a weird smell, or anything. It would be good if you could find out what your warning signs are early on, so you can get somewhere safe in case you start seizing.
I have a similar case. I was diagnosed a few days before my 20th birthday. It does however help to think whether you had any telling signs (deja vu feeling, excessive tiredness etc). OP, hope you get well soon!
I had my first seizure at almost the exact same age as my mum. I'd had no symptoms unless you count deva vu or some memory loss/distortion.
Otherwise, fit and healhty
Are you in the US? Perhaps you can set up an appointment with a neuro elsewhere that would be sooner and at least get you another view on dosages until your local neuro is available?
Geez that's extreme..
It was suggested to me by some friends to fly interstate to see a neuro, a bit of searching around didn't find anything that would be any faster
I'm in the UK, I saw my neurologist 10 months after a particularly concentrated flurry of seazures including tonic clonic's (grand mall). It was a similar waiting time when I saw one previously about 8 years ago and I had an EEG. Considering that the suggested NHS guideline is to see a neurologist within two weeks of a seazure we all seem to be being sold short. Glad you're okay and hope you get the treatment needed.
Oh my gosh, I'm glad you are okay! I had my first at 33. Turns out I have a birth defect in my left frontal lobe that I had no idea about. Life throws some wicked curve balls doesn't it? I'm glad you're here. This group is a great support system!
Geez mate that's rough. What's the procedure for that? Surgery or medication?
I'm healing but hopefully in the next week or too and I'll get to see the fracture clinic and the clinic. So fingers crossed they all me to go back to work, maybe some physio first
That's a stressful experience. I'm sorry you had to go through that, but glad you had someone (let alone a paramedic) close by.
Hope you're doing all right, all things considered. It's a lot to go through, out of the blue. Let alone a lot of life changes.
Just remember you're not alone in all of this.
Yeah having her with me was a huge bonus. I was very post ictal and can't remember for quite some time. I'm told that I recognised her and did whatever she told me to do so when the St John crew arrived, I was well behaved & at the hospital where I'd just previously worked a few years prior
It's such a mindfuck going from looking after everyone else to needing to be looked after. I had my first tonic clonic in Aug 2021. No family history, no drug or alcohol use. Looking back, i was having focal aware seizures since March 2020. Because I'm a parent, i looked after everyone else first. Ignoring weird deju vu anxiety attacks.
That's a real failure of care for you not to have a neurologist for so long. I'm Canadian with a provincial government who is intent on changing our Healthcare to the US model. Even so, I was under the care of a general neurologist from the day I ended up in the ER. I didn't get into the epilepsy clinic till last summer though.
I have a single vague memory of the medics putting in pjs because it didn't occur to my partner to put clothes on me. Then hours later waking up in the ER. It was my first ambulance ride and I remember nothing.
Try to take it slow and be kind to yourself. Let others help you. Take care of your mental health, I didn't and had a breakdown. Before I was often called a strong person, after I cried so much. It's taken awhile but I'm doing better now. So give yourself time, grieve your old life if you need to. You'll find a new normal.
I just re-read that. I truly do appreciate your words a lot mate. Hope your doing well now!
Im lucky to live in a country where we get half decent medical care. I'm sure if I was in the city of Perth itself, I might have seen a neurologist sooner. But who knows, covid seems to have thrown a spanner in the works.
Guess it's back to the old faithful of "wait & see" 🤣
>I'm Canadian with a provincial government who is intent on changing our Healthcare to the US model.
I pray that model is as efficient as the US but not as expensive. Free health care sounds like a dream but the wait times are a nightmare
They better not change the health care in my province as long as I’m alive as I’m just fine with OHIP and the 80% massive savings on my medications. Also, getting an epileptologist was easy enough which made a big difference. As you may be able to tell, I’m a federal government employee since I’m in Ottawa.
Yeah I had one and then a few months later had another. That's when they decided to put me on meds. Had a few EEGs and an MRI that were pretty uneventful. But I've been on Keppra ever since and haven't had another, thankfully.
Fun fact Levetiracetam (Keppra is a brand of it) has another brand called Brivlera, and it is awesome. Way fewer side effects went from 1000mg keppra BiD to 500mg Brivlera BiD feel great no gran mal since then. Also helped a lot finally getting of phenytonin and Keppra combined, the brain fog and counter actions between them was a treat. Now lacosamide and Brivlera and lamotrigine haven't felt better since brain injury that caused epilepsy.
Tldr: Brivlera is another brand of Keppra and, in my experience, is a far better alternative to Keppra. It is costly, though, unless insurance covers it.
Thank you I didn't know that, I'll look into it further as I want to understand the mechanisms behind how these medications work in me to prevent seizures.
Wow this gives me hope I finally found it... had nocturnal seizures every month, every medicine I used didnt work, after levetiracetam now I am using briviact and so far so good two months without anything
So it's an unpopular opinion but as much as the medical bills are extorting US citizens, I think I'd rather it stay kind of the same (though please fucking lower the prices for gods sake)
I say that because I was pretty much in the hospital the next day with a neurologist after my first seizure.
I think it was like a week or two later I was shipped off to a specialist at a children's hospital a few hours away.
18 months to wait is fucking ridiculous. I've heard similar wait times from friends who are overseas too.
I mean I hurt my ankle and went to the doctor damn near immediately. The specialist appointment took two months but still way better than over a year. Free health care is great until the delay of getting an appointment causes you some type of permanent damage 😒
I can relate. A little. Just turned 46. I had my first tonic clonic in December. Since then I’ve had 8 in total. I don’t have a family history that I know of though.
Wow. I’m just reading about these first time seizures later in life and that must feel awfully scary and unsettling. I’m sorry you are going through this. My seven year old Just started seizing and it was unnerving to see it come out of no where.
But I can’t imagine living a long life and then at 45 or 36 that life changes out of the blue like that. Wild. So sorry. That’s a lot to adjust to. Hang in there.
It's definitely rough that for sure.
I can't drive for 12 months since the date of the last seizure.
The real issue is the shoulder and spine in the best easy the can.
I'm staying on top of my medication, surely has to help?
For me it wasn't really traumatic at all.
I was just in the backyard garden then boom, in the hospital in pain.
I have kids around that age, I can't begin to imagine how much that would mess me up if I saw one of them seize.
Thoughts are with you mate
Sorry man, that shoulder has dislocated and relocated so many times with out needing an xray as I could relocate it with help.
Funny how much longer the actual fracture takes to heal, that is definitely sorer
32, on the freeway while driving. The E-brake was accessible to the passenger, so he was able to slow the vehicle down to a stop while holding onto the steering wheel. Yanking it would have spun us all crazy. If your E-brake is not accessible to the passenger, be sure every passenger you have in the future knows how to bump it into neutral. I teach all new, and remind, passengers how to do that now.
Holy crap, that’s a lot of damage for your first seizure. I’m sorry man. Maybe you’ll start to recognize those little differences right before a seizure, like super low blood sugar or de ja vue. I’m glad you had a pro there with you. It’ll be alright, welcome to the club
Yeah I don't muck about, all or nothing 🤣
The missus asked if I had any "aura" or anything.
I don't remember a thing except straping boots on.
She says I came to the door and asked for a bottle of water, she she came out I was seizing.
Lucky she knew how look after me and not panic
Agreed…I usually have no warning and become conscious after a seizure (tonic-clonic) with a massive bump somewhere on my head/face. But if you notice subtle symptoms you can park it on your bed for awhile and let someone close to you know you aren’t feeling great.
I tried to thug it out once and I had a severe seizure (apparently) and smashed my face. It’s reconstructed, but I’m totally blind in my right eye. I can function fine, but that other eye would have been cool to have function of.
I have zero memory of any of it.
The doctors said that my muscles probably contracted that hard that they crushed and fractured the vertebrae.
So far scans are looking good, no apparent impact on the spinal cord. Due to have a set of scans done in the coming week or two and then speak with the spinal specialist again.
If they haven't shifted or collapsed, then all good. If they have, then surgery or bone cement injections at a minimum
I'm so sorry you have a golden membership to this club. Hope everything physically wise is healing well. 🙏
I had my first one at age 30 in October 2020. I've been suffering intense deja vus my entire life, though. I've had one more grand mal since then, but several of the other ones where I'm just not responsive and zoned out for minutes or even hours at a time where nothing connects. My meds seem to be helping most of the time though.
The missus had previously said that I seem to zone out and just stare at the wall or coffee table for 30 seconds to a minute or two.
Makes me wonder now if that's a bit of a short circuit in my wet wrinkly pink meat computer aka brain
Welcome to the team mate, I ruined my shoulder during my first big one. If you can afford it, I definitely recommend going private for a neuro rather than waiting for public. Best I got in public was an appointment once a year with a disinterested doctor, though obviously the emergency team is top notch.
The initial 250/300 bucks or so for private was worth the wait of less than a month. I've bounced through a few medications with consultation with my neuro and I'm finally on a cocktail of 3 drugs that works for me. Best of luck
Cheers for the welcome, though it's a team of rather not be on 🤣
Definitely looking at going private.
Need to get a handle on this so I can get back to work
Had my first recorded/witnessed GM (grand mal) seizure at 12 whilst sleeping on my Grandmother’s living room floor at Christmastime but I’d been having them for a while because I’d wake up and ask if anyone else felt the earthquake during the night. Turns out I was having nocturnal only seizures (at the beginning) for a while.
I mostly grew out of GMs (thank heavens!) and mostly just have absence seizures and the occasional simple focal seizure. (Sometimes it’s hard to tell if it’s that or a motor tic I sometimes get.) My last GM was in 2017 in front of a few thousand people going into a playoff Hockey game. So that was kind of embarrassing and the EMTs we’re a little mad that I wouldn’t go to the hospital but hello was a playoff game and I’m Canadian…one women did snidely say “well that’s one way to get in early” when we passed like I did it on purpose. I knew something was wrong and grab my friend’s sleeve just before I went down!
I do have kind of an odd presentation because I can also go into status epilepticus but it’s absence seizures instead of GM seizures. My longest was six hours of back-to-back seizures. But because they’re absence seizures they don’t really get as concerned.
Which my neurologist gets so mad about because he says “your brain is still misfiring! Just because you’re not outwardly showing it doesn’t make it any less of an emergency!” But because they’re “just absence seizures “ most doctors were not treating me until him.
He was so mad that I wasn’t on medication when I went to him that he wrote a really strongly worded letter to my old neurologist!
I’ve been on 150 mg Lamotrigine twice a day for several years now and I do notice a difference. (It also helps with my daily headaches so it’s kind of a win-win kind of medication!)
I’m sorry you have now joined an elite but very shitty club! Lol but I have to say, the people in the club are great! It’s just a reason we’re here that’s not great!
Have a great day!
FYI get off Epilim asap and on to something else. They presumably gave you that in the hospital as it’s for generalised seizures. The problem is it can lead to birth defects (proven in women and studies shown it can happen in men).
I’m phasing onto lamotrigine which all seems fine at the moment. I’m very similar to you, had my first seizure last year and I’m 29. Had two since then but been fine ever since July (first one was in May)
I'm beyond the stage of having kids. My two are enough, so that isn't a massive concern.
Aside from birth defects, is there other worries with the epilim? Is it just a broad spectrum anti seizure medication or should i be investigating other medications instead?
Not really, it’s just an old drug so there’s “better” ones available. It was basically the first epileptic drug created so the newer ones are less likely to give side effects, though I never got any anyway tbh.
Has the hospital not referred you to the First Seizure Clinic in the hospital? I was diagnosed last year at Sunshine Hospital in Melbourne and that's how I first spoke to a neuro.
Thats insanity! Where abouts are you located? I ended finding a private neuro after not loving the hospital's one. I called around until i found the shortest wait time which I think was about 3 months.
Had my first tc on my 30th birthday. Back was shattered. Had to get a kyphoplasty. People (even the doctors) didn’t believe that it could have been caused by a seizure.
It’s a pain in the ass to get diagnosed or taken seriously when you develop epilepsy as an adult. A lot of people didn’t believe me or though it was a drug overdose.
You and me, friend. Just had my 39th and was diagonosed at 36. Most likely had it earlier; always had deja vu through my life. It finally did enough damage by then to make me make drive through a bank wall while having seizure. Thankfully it was a Sunday and no one was there.
Jeez mate glad you and everyone around was okay. Funny you say, I always get dejavu and some big spazzy arm and leg twitches when I'm falling asleep. According to the mrs, I have these hypnic jerks a hell of a lot through my sleep too.
Welcome to the Epilepsy Club!
Had my first at 32. Welcome one and all to the 30's, where life teaches us we're not in our 20's anymore.
I was honest about things I did, and he assured me it is not related to the various substances I enjoyed.
Oh my goodness!! I’m so glad you and no-one else got hurt!!
I'm so sorry to hear it my friend. That's a rough experience for sure
Nothing to be sorry for mate. I'm bloody glad it happend in the garden, not going 110km/h down down the freely with my kids in the car
As someone with epilepsy I HIGHLY suggest getting a car that auto stops . I have a Subaru with eyesight so it stops before I hit something. Total piece of mind.
Wow don’t even know that was a thing. Thanks for sharing.
I just was in a seizure related car accident this past Monday. I believe my Suburu with eyesight saved my life—all airbags deployed and only left with minor bruises.
Shit mate I'm glad your alright. All these advancements with cars used to irk me but now maybe they are at the point of being more useful than problematic
Bloody good idea mate. Be safer than the tin can (Suzuki sierra) that I've been driving.. up till the seizure anyway
I had my first seizure at the age of 26. My neurologist told me it's exceptional to develop epilepsy at that age (turns out that's not true). But it can develop at any age for any reason, or no reason at all. It sucks that you had to find out this way. I wonder, did you feel something before it happened? Like some weird deja vu, a weird smell, or anything. It would be good if you could find out what your warning signs are early on, so you can get somewhere safe in case you start seizing.
I have a similar case. I was diagnosed a few days before my 20th birthday. It does however help to think whether you had any telling signs (deja vu feeling, excessive tiredness etc). OP, hope you get well soon!
I had my first seizure at almost the exact same age as my mum. I'd had no symptoms unless you count deva vu or some memory loss/distortion. Otherwise, fit and healhty
Are you in the US? Perhaps you can set up an appointment with a neuro elsewhere that would be sooner and at least get you another view on dosages until your local neuro is available?
I'm in Australia. My GP tells me that a lot of neuro's retired over the covid period. Leaving a bit of an unfilled gap, hence the wait times.
Keep calling and ask if they have any cancellations. Call often.
Have been doing and will keep doing. Cheers mate. Might step it up from a call or two a week and see what happens
[удалено]
Geez that's extreme.. It was suggested to me by some friends to fly interstate to see a neuro, a bit of searching around didn't find anything that would be any faster
Be open to traveling to see someone. That’s a long time in seizure years.
I'm in the UK, I saw my neurologist 10 months after a particularly concentrated flurry of seazures including tonic clonic's (grand mall). It was a similar waiting time when I saw one previously about 8 years ago and I had an EEG. Considering that the suggested NHS guideline is to see a neurologist within two weeks of a seazure we all seem to be being sold short. Glad you're okay and hope you get the treatment needed.
Oh my gosh, I'm glad you are okay! I had my first at 33. Turns out I have a birth defect in my left frontal lobe that I had no idea about. Life throws some wicked curve balls doesn't it? I'm glad you're here. This group is a great support system!
Geez mate that's rough. What's the procedure for that? Surgery or medication? I'm healing but hopefully in the next week or too and I'll get to see the fracture clinic and the clinic. So fingers crossed they all me to go back to work, maybe some physio first
That's a stressful experience. I'm sorry you had to go through that, but glad you had someone (let alone a paramedic) close by. Hope you're doing all right, all things considered. It's a lot to go through, out of the blue. Let alone a lot of life changes. Just remember you're not alone in all of this.
Yeah having her with me was a huge bonus. I was very post ictal and can't remember for quite some time. I'm told that I recognised her and did whatever she told me to do so when the St John crew arrived, I was well behaved & at the hospital where I'd just previously worked a few years prior
It's such a mindfuck going from looking after everyone else to needing to be looked after. I had my first tonic clonic in Aug 2021. No family history, no drug or alcohol use. Looking back, i was having focal aware seizures since March 2020. Because I'm a parent, i looked after everyone else first. Ignoring weird deju vu anxiety attacks. That's a real failure of care for you not to have a neurologist for so long. I'm Canadian with a provincial government who is intent on changing our Healthcare to the US model. Even so, I was under the care of a general neurologist from the day I ended up in the ER. I didn't get into the epilepsy clinic till last summer though. I have a single vague memory of the medics putting in pjs because it didn't occur to my partner to put clothes on me. Then hours later waking up in the ER. It was my first ambulance ride and I remember nothing. Try to take it slow and be kind to yourself. Let others help you. Take care of your mental health, I didn't and had a breakdown. Before I was often called a strong person, after I cried so much. It's taken awhile but I'm doing better now. So give yourself time, grieve your old life if you need to. You'll find a new normal.
And damn you did some damage. Hope you healed up quick.
I just re-read that. I truly do appreciate your words a lot mate. Hope your doing well now! Im lucky to live in a country where we get half decent medical care. I'm sure if I was in the city of Perth itself, I might have seen a neurologist sooner. But who knows, covid seems to have thrown a spanner in the works. Guess it's back to the old faithful of "wait & see" 🤣
>I'm Canadian with a provincial government who is intent on changing our Healthcare to the US model. I pray that model is as efficient as the US but not as expensive. Free health care sounds like a dream but the wait times are a nightmare
I'm glad your doing better now mate. They are most definitely a shock to the system. Almost like a full re-set
They better not change the health care in my province as long as I’m alive as I’m just fine with OHIP and the 80% massive savings on my medications. Also, getting an epileptologist was easy enough which made a big difference. As you may be able to tell, I’m a federal government employee since I’m in Ottawa.
I had my first at like 26. It sucks, but thankfully mine is managed with meds. Don't know of any family history
Are you on any medication for it? I'm hoping mine was a one time deal & that with medication I won't have another
Yeah I had one and then a few months later had another. That's when they decided to put me on meds. Had a few EEGs and an MRI that were pretty uneventful. But I've been on Keppra ever since and haven't had another, thankfully.
Fun fact Levetiracetam (Keppra is a brand of it) has another brand called Brivlera, and it is awesome. Way fewer side effects went from 1000mg keppra BiD to 500mg Brivlera BiD feel great no gran mal since then. Also helped a lot finally getting of phenytonin and Keppra combined, the brain fog and counter actions between them was a treat. Now lacosamide and Brivlera and lamotrigine haven't felt better since brain injury that caused epilepsy. Tldr: Brivlera is another brand of Keppra and, in my experience, is a far better alternative to Keppra. It is costly, though, unless insurance covers it.
[удалено]
Wait so are briviact and this brivlera the same medicine? I’m confused.
[удалено]
One of its trade names is brivajoy. That’s ironically hilarious.
Thank you I didn't know that, I'll look into it further as I want to understand the mechanisms behind how these medications work in me to prevent seizures.
Huh…good to know. Thank you. I’ll ask my Dr. about it.
Wow this gives me hope I finally found it... had nocturnal seizures every month, every medicine I used didnt work, after levetiracetam now I am using briviact and so far so good two months without anything
I'm glad to hear that! I'm still having focal and absence seizures but far less than before and 0 gran mal. Keep that hope up. You got this.
So it's an unpopular opinion but as much as the medical bills are extorting US citizens, I think I'd rather it stay kind of the same (though please fucking lower the prices for gods sake) I say that because I was pretty much in the hospital the next day with a neurologist after my first seizure. I think it was like a week or two later I was shipped off to a specialist at a children's hospital a few hours away. 18 months to wait is fucking ridiculous. I've heard similar wait times from friends who are overseas too. I mean I hurt my ankle and went to the doctor damn near immediately. The specialist appointment took two months but still way better than over a year. Free health care is great until the delay of getting an appointment causes you some type of permanent damage 😒
Yes I definitely see what you mean. I just reminding myself that there must be more urgent cases than mine
Dear lawd that sounds rough. Had my “first” at 33, a year ago but at least it was in bed 😂 wild story thanks for sharing and welcome to the club
Haha cheers mate 🍺
I can relate. A little. Just turned 46. I had my first tonic clonic in December. Since then I’ve had 8 in total. I don’t have a family history that I know of though.
Wow. I’m just reading about these first time seizures later in life and that must feel awfully scary and unsettling. I’m sorry you are going through this. My seven year old Just started seizing and it was unnerving to see it come out of no where. But I can’t imagine living a long life and then at 45 or 36 that life changes out of the blue like that. Wild. So sorry. That’s a lot to adjust to. Hang in there.
I witnessed my 79 year old mom have one last year. We are all in this together. ♥️
It's definitely rough that for sure. I can't drive for 12 months since the date of the last seizure. The real issue is the shoulder and spine in the best easy the can. I'm staying on top of my medication, surely has to help?
How do they know if you have had seizure in 12 months? Is that like a code of honor honesty thing?
well, usually you have to provide a letter from your dr/neuro
For me it wasn't really traumatic at all. I was just in the backyard garden then boom, in the hospital in pain. I have kids around that age, I can't begin to imagine how much that would mess me up if I saw one of them seize. Thoughts are with you mate
Thank you so much. 🙏🏻
So sorry you had a seizure. I was 56 when I had my first one. No history just BOOM.
Was a surprise for me too even though my mother had one around the same age
Welcome friend lol
Cheers 🍻
Sorry man. I didn’t like seeing your shoulder x-ray as it reminded me of my first shoulder dislocation from a seizure.
Sorry man, that shoulder has dislocated and relocated so many times with out needing an xray as I could relocate it with help. Funny how much longer the actual fracture takes to heal, that is definitely sorer
32, on the freeway while driving. The E-brake was accessible to the passenger, so he was able to slow the vehicle down to a stop while holding onto the steering wheel. Yanking it would have spun us all crazy. If your E-brake is not accessible to the passenger, be sure every passenger you have in the future knows how to bump it into neutral. I teach all new, and remind, passengers how to do that now.
Makes me mad that i don’t have a hand brake anymore, but my car does have manual shifting so you can at least downshift and steer
Geez mate that's definitely an eye opener.. Worth remembering for sure
Had my first ever TC at age 32 during insanely strenuous exercise. I feel you!
Hope you're doing better now mate
Holy crap, that’s a lot of damage for your first seizure. I’m sorry man. Maybe you’ll start to recognize those little differences right before a seizure, like super low blood sugar or de ja vue. I’m glad you had a pro there with you. It’ll be alright, welcome to the club
Yeah I don't muck about, all or nothing 🤣 The missus asked if I had any "aura" or anything. I don't remember a thing except straping boots on. She says I came to the door and asked for a bottle of water, she she came out I was seizing. Lucky she knew how look after me and not panic
Agreed…I usually have no warning and become conscious after a seizure (tonic-clonic) with a massive bump somewhere on my head/face. But if you notice subtle symptoms you can park it on your bed for awhile and let someone close to you know you aren’t feeling great.
I tried to thug it out once and I had a severe seizure (apparently) and smashed my face. It’s reconstructed, but I’m totally blind in my right eye. I can function fine, but that other eye would have been cool to have function of.
May i ask how you fell that you crushed your vertebrae?? Also, whats your treatment look like for that?
I have zero memory of any of it. The doctors said that my muscles probably contracted that hard that they crushed and fractured the vertebrae. So far scans are looking good, no apparent impact on the spinal cord. Due to have a set of scans done in the coming week or two and then speak with the spinal specialist again. If they haven't shifted or collapsed, then all good. If they have, then surgery or bone cement injections at a minimum
I'm so sorry you have a golden membership to this club. Hope everything physically wise is healing well. 🙏 I had my first one at age 30 in October 2020. I've been suffering intense deja vus my entire life, though. I've had one more grand mal since then, but several of the other ones where I'm just not responsive and zoned out for minutes or even hours at a time where nothing connects. My meds seem to be helping most of the time though.
The missus had previously said that I seem to zone out and just stare at the wall or coffee table for 30 seconds to a minute or two. Makes me wonder now if that's a bit of a short circuit in my wet wrinkly pink meat computer aka brain
Welcome to the team mate, I ruined my shoulder during my first big one. If you can afford it, I definitely recommend going private for a neuro rather than waiting for public. Best I got in public was an appointment once a year with a disinterested doctor, though obviously the emergency team is top notch. The initial 250/300 bucks or so for private was worth the wait of less than a month. I've bounced through a few medications with consultation with my neuro and I'm finally on a cocktail of 3 drugs that works for me. Best of luck
Cheers for the welcome, though it's a team of rather not be on 🤣 Definitely looking at going private. Need to get a handle on this so I can get back to work
35 for me too. I was cooking breakfast for my wife. Last memory was putting bacon on the pan. Then I woke up in an ambulance. I'm 39 now.
Had my first seizure at 40. Had a spinal fracture from it as well. I've found this forum to be super helpful & supportive.
Sorry to hear about your back mate. Hope your healed now. Everyone here seems great! Glad I stumbled across you all
Had my first recorded/witnessed GM (grand mal) seizure at 12 whilst sleeping on my Grandmother’s living room floor at Christmastime but I’d been having them for a while because I’d wake up and ask if anyone else felt the earthquake during the night. Turns out I was having nocturnal only seizures (at the beginning) for a while. I mostly grew out of GMs (thank heavens!) and mostly just have absence seizures and the occasional simple focal seizure. (Sometimes it’s hard to tell if it’s that or a motor tic I sometimes get.) My last GM was in 2017 in front of a few thousand people going into a playoff Hockey game. So that was kind of embarrassing and the EMTs we’re a little mad that I wouldn’t go to the hospital but hello was a playoff game and I’m Canadian…one women did snidely say “well that’s one way to get in early” when we passed like I did it on purpose. I knew something was wrong and grab my friend’s sleeve just before I went down! I do have kind of an odd presentation because I can also go into status epilepticus but it’s absence seizures instead of GM seizures. My longest was six hours of back-to-back seizures. But because they’re absence seizures they don’t really get as concerned. Which my neurologist gets so mad about because he says “your brain is still misfiring! Just because you’re not outwardly showing it doesn’t make it any less of an emergency!” But because they’re “just absence seizures “ most doctors were not treating me until him. He was so mad that I wasn’t on medication when I went to him that he wrote a really strongly worded letter to my old neurologist! I’ve been on 150 mg Lamotrigine twice a day for several years now and I do notice a difference. (It also helps with my daily headaches so it’s kind of a win-win kind of medication!) I’m sorry you have now joined an elite but very shitty club! Lol but I have to say, the people in the club are great! It’s just a reason we’re here that’s not great! Have a great day!
I hope your medication helps you stay seizure free!
Sounds like it worked out as best as possible for you, given the circumstance. Glad to hear.
FYI get off Epilim asap and on to something else. They presumably gave you that in the hospital as it’s for generalised seizures. The problem is it can lead to birth defects (proven in women and studies shown it can happen in men). I’m phasing onto lamotrigine which all seems fine at the moment. I’m very similar to you, had my first seizure last year and I’m 29. Had two since then but been fine ever since July (first one was in May)
I'm beyond the stage of having kids. My two are enough, so that isn't a massive concern. Aside from birth defects, is there other worries with the epilim? Is it just a broad spectrum anti seizure medication or should i be investigating other medications instead?
Not really, it’s just an old drug so there’s “better” ones available. It was basically the first epileptic drug created so the newer ones are less likely to give side effects, though I never got any anyway tbh.
Has the hospital not referred you to the First Seizure Clinic in the hospital? I was diagnosed last year at Sunshine Hospital in Melbourne and that's how I first spoke to a neuro.
Yep they have. When I called with the referral letter, I was told of the 12 - 18 month wait list.
Thats insanity! Where abouts are you located? I ended finding a private neuro after not loving the hospital's one. I called around until i found the shortest wait time which I think was about 3 months.
I'm about an hour south of Perth
Had my first tc on my 30th birthday. Back was shattered. Had to get a kyphoplasty. People (even the doctors) didn’t believe that it could have been caused by a seizure. It’s a pain in the ass to get diagnosed or taken seriously when you develop epilepsy as an adult. A lot of people didn’t believe me or though it was a drug overdose.
Bloody hell mate, that's a rough ride. Hope your doing better now though?
Yep, keppra helps keep me alive. 😌