Epilepsy journey with partial seizures | Annie Bean

An updated #epilepsy video about my #complex #partial #seizure journey. Lots has changed since 2015 including my epilepsy and what I now experience... so let's chat!
❎I am not a medical professional so i cannot give epilepsy diagnosis advice please consult your doctor or an epilepsy charity as I cannot answer or advise❎
Don't forget to leave comments and queries below - and if you're watching subscribe to my channel :)
You can buy me a coffee to support my work - ko-fi.com/itsanniebean
Find #travel #lifestyle #beauty #fitness #vlogs and plenty more all on this channel!
Grab a tea and stick around with me!
Liked what you were watching? Don't forget to hit that subscribe button! Also... I don't just do a KZbin channel... I blog too...
_ _ _ _ _ _
LET'S GET SOCIAL!
BLOG - www.talesofanniebean.com
TWITTER - / missanniebean
INSTAGRAM - / itsanniebean
FACEBOOK - / talesofanniebean
PINTEREST - / missanniebean
BLOGLOVIN - www.bloglovin.com/en/blog/tale...
SNAPCHAT - imanniebean
_ _ _ _ _ _
TECH USED
Main Camera: tidd.ly/2887bd89
Vlogging Camera: tidd.ly/5c620c29
GoPro: tidd.ly/a1e620c4
Tripod: tidd.ly/ef1c3996
Phone: tidd.ly/b5734d25
Fitness Watch: tidd.ly/604019bc
_ _ _ _ _ _
INTRO MUSIC - Kiss for Dance - Jingle Punks
OTHER MUSIC FEATURED
-
-
_ _ _ _ _ _
DISCLAIMER
All views and opinions are that of my own.
Whilst this isn't a sponsored video, some of the links above may be from affiliate related sites, meaning if you click the link and make a purchase I will get a small percentage. However, I'll only supply links to items I currently use or items I truly like.
For this trip, I was kindly invited by Lodge on Loch Lomond to take a visit on our trip to Scotland.
_ _ _ _ _ _
WANT TO SAY HELLO?
Want to get in touch? Well, that's nice! Drop me an email - [e-mail]. If I don't reply straight away I'm probably climbing a tree, throwing myself down a mountain or I'm just so far off the beaten track I have no wifi!

[@juliebey8240]

I started having complex partial seizures at 31 about 25 yrs ago😒largely controlled by meds 400 mg x2 daily. I didn’t drive for 2 yrs. Life is normal now. I drive and have maintained a job the whole time. Occasionally have one and remember the scary feelings of not having control over your body. Life is good. I have been blessed. You wii find your way. 👏👍☺️

[@FullTimePatient37]

I hope you'll put this behind you for good 😊😊😊

[@janicejustice8449]

Your first video on your epilepsy really helped me right after being diagnosed 2 years ago with complex partial and simple partial seizures. After a little bit of a bounce around with medications I think we have finally found the right one to work with me. I still have them here and there but NOTHING like I was having. And like you were saying I also still have the odd things that happen here and there but you learn to deal with it and laugh about it when you can and move on. Still have those "off days" here and there where you feel really out of it and spacey all day. But lack of sleep and stress are my 2 big triggers,and that is usually when those "off days" happen. So as long as I keep those 2 things under control I'm good to go. Keep the videos coming!

[@christinetebedo8352]

His friends are scared of him. Which creates loneliness & isolation! & I've left my job in eye care to care for him! I love him, & I'm always listening to the monitor so I can catch his head in the garage & avoid concussion! I get bruised. He lost his driver license due to crashing into a neighboring yard. I blame myself bcz I was so tired! & he doesn't have auras. Please keep posting! I haven't found anyone like you!

[@badkarma5946]

Loads of help. Thank you so much

[@aliannan8513]

Thank you

[@furqaniqbal7223]

In the case of grand mal seizures or absence seizures, it's better to have an EEG taken at least every 5 to 6 months to see how the progress of the medication and your health is going. Sometimes it's better to increase a dosage. You should talk to your doctor about a medicine called lamotrigine, it's a great medicine and doesn't cause any other difficulties. Another advice is to have a hobby which will keep you relaxed and watch comedy programs more often. The reason is because this will just take away stress and keep you more relaxed. It's very important to avoid amusement park rides as this can worsen any types of seizures during the day and even during your sleep. Missing doses increases the seizures and they are quite severe.

[@addhoc256]

thanks for charing your story. Im also blanking out often and I never knew it was epilepsy. Because the information I had on epilepsy was that it was falling on the ground being spastic. And I never knew absence epilepsy existed. I only learned via KZbin and it took a year to get tested with a sleepdeprived EEG scan where they also were shining flickering lights in my eyes and did everything to provoke a seizure. And I totally didn't notice I had one I just fell asleep, what isn't strange after 22 hours without sleep. But later the neurologist explained my EEG scan was very typical for someone with a certain form of epilepsy. So Im still learning more about it. Im glad I found you on youtube that is talking lightly about it, not making it a very scary severe serious condition. I probably had it all my life but because its only one small part of the brain that does it I don't fall down I only have absences and things like you describe: I could be cycling around and a police officer stops me and give me a ticket for cycling across a red light and Im like what light? And the police said: when you crossed that crossroad: and Im like: what crossroad? Where am I. I was supposed to turn left before that crossroad why did I cycle here I have no memory. I still had to pay 120,- penalty for dangerous cycling even though I was unconscious. Nobody believes you can be unconscious and still continue cycling. I also thought that it wasn't possible but now I learn more about it

[@furqaniqbal7223]

Please avoid cycling, it can be very dangerous if you have a seizure and you lose control of your cycle. If you have a car it's still safer as you can pull over for safety. Always keep a cold water bottle with you as this will cool your brain and body immediately after having a seizure. If your body is still weak, drink a smoothie or frappe as this will further relax your body. Watch comedy programs to reduce your stress. Avoid smoking or anything that affects the brain Avoid missing meals, it is very important for you to take proper meals and proper sleep. Avoid amusement park rides, this can worsen any types of seizures. Which medication are you taking ? Ask your neurologist to change your medicine to Lamictal or lamotrigine as this medication is more effective. Good luck and I hope you stay well

[@christinetebedo8352]

God bless you! For real! Daniel has a superb neurologist! Our biggest need is to hear about how it makes you feel physically & mentally! Stress & sleep is a big factor. Daniel can't work or drive & mom myself helps him! I'd take spacey moment over breaking the toilet in the midst of a Dookie! I tried to get him to help clean up but he was still seizing!

[@gemmawalker5137]

Oh my god watching that crying my eyes out.. I have exactly the same but not getting anywhere in the way of a diagnosis. Doctors just say 'panic attacks' When you said "stress is a trigger.." my god are you right, but it's not easy to eliminate from your life.. wish I had your strength😢 they're ruining my life, not to mention embarrassing. Xxxxx

[@tara4455]

Omg that's what every doctors say that I've ever seen for my seizures all said panic attacks. Even after seeing a footage of my seizures. And then a neurologist I was referred to finally explained what my seizures was and I'm now exploring medications for epilepsy. It's still uncertain but it's more than what I've had for over 15 years of being fobbed off x

[@furqaniqbal7223]

@ Tara Perhaps those doctors need some help themselves. Seizures are very serious if not taken care of. What you can do to get a little better yourself is, drink cold water as this will immediately cool your brain and relax your body if you have a partial seizure. If you still feel weak then you should drink a smoothie or a frappe as this will help relax your body. ( something ice blended is great ) Sometimes it's better to eat a little healthier too. You should eat a Fish meal ( not fast food ) and greenery vegetables. If during your sleep you have a partial seizure, sit up and drink water and only complete your sleep after your body is fully normal. I hope my reply was helpful. Good luck and I hope you stay well

[@sophiepalmer-doran344]

When I was a baby I had a febrile seizure I stopped breathing and turned blue my mom gave me mouth to mouth and by the time the EMTS arrived I stopped seizing. in pre k I would get angry and punch any thing that was in front of me that is when it was suggested that my parents should take me to a therapist. he took one look at me and said that I was having seizures he then referred me to a neurologist. At the at the age of 5, I was diagnosed with childhood absence epilepsy but I have been seizure free since the age of thirteen. And so was taken of meds which caused massive weight gain a hand tremor and memory loss. The point is meds are good up until a point and then it becomes a pill, no pun intended. My triggers are flashing lights, the transition from the out doors to inside a classroom getting too hot and recently sleep deprivation. when i have an absent my pupils will go from normal to pin point that is the only physical sign the eye can lasts My seizures last one second and happened every minute to every minute and a half. So there are 60 seconds in a minute and 24 hours in a day then I was having seizures every 1440 minutes or 86400 seconds so in total I would have 86400 seizures per day with meds. my parents were told to treat me as a normal child and to see how fare I would develop and look at me now I have graduated high school with honors . I am in collage as you can infer I was not expected to do much of what I just mentioned The effects of my seizures is that I have Aspie like tendencies due to my epilepsy which I know is difficult to understand to put it in simple terms as a result of my seizures my brain compensated and rewired itself and so I have all of the symptoms of Aspergers but lack any sort of understanding math as a result I have no understanding of money and never really learned my basic math facts.(I am just learning them now in college which for most Aspergers people they are gifted with math abilities ) I also have orthotic issues due to my seizures I also have a processing disorder. I have low gross motor control and other motor issues as well. After my father died, it seems I have had a relapse if that is possible. I still have my absence seizure but it is not enough to put me on meds . I take omega 3 cod liver oil liquid form as I cannot swallow pills this helps decrease the too small to medicate seizures I have very small seizures that show up on the EEG as misfired neurons and the Dr. called them "flurries" so here is what my flurries are typically like I will become very spacey I can not interact with my surroundings I also felt locked in to place. I am completely aware my vision becomes like a tunnel and thing start to move or vibrate on their own an absent seizure lasts 1 second but these flurries can last 5-10 minutes.

[@imeloweez]

It’s so odd that medications can be used for different things. I take lamotrigine too, just not for Epilepsy!

[@saraibbetson5447]

Ahhhhh great to see another video from you! Ive been following you on Instagram on your travels! I was diagnosed earlier this year with focal (simple partial) seizures after a year of being told I had panic/anxiety attacks. My seizures are sensory so completely unnoticeable but feel bad to me. I still find people don't take it seriously because they can't see anything but Im trying to educate people around me where I can. Im also on Lamotrogine (lamictal) 50 twice a day along with folic acid and it has improved them a lot but its hard for me to differentiate between side effects and seizures as my seizures are indescribabe feelings, much like the side effects can be. All in all I would say I am averaging once a month (I did have one a couple of days ago which was a little different as i couldn't speak for around 10 seconds, Im usually fully functional) Its definitely taken some adjusting but i never had to give up my licence as these are the only kind i have but they now have to review it every 5 years. Its been especially hard as we have had 1 round of IVF and are now on the second (started the first 2 weeks after my diagnosis) so my poor body has been through it. Great to watch your videos still as partial epilepsy is so unknown so I struggle to relate to a lot of people with epilepsy (however I am always grateful mine are milder and have so much respect for people whose lives are impacted much more) but its still hard. Keep sharing :-)

[@hannahproudfoot6528]

Hi Annie. Thanks for sharing your videos. The seizures you’ve experienced sound a lot like what I’ve been experiencing but I have been dismissed by medical professionals because my first and only EEG didn’t show anything. I’ve also noticed a pattern with my seizures during my menstrual cycle and know this can be an indication of catamenial epilepsy but again no one seems to be listening. Feels so isolating but I’ve found it helpful watching your videos and will keep pushing for answers and trying to self manage as best I can. If anyone else has experienced being dismissed after 1 test or has any experience of menstrual seizures, please comment. Thanks 😊

[@furqaniqbal7223]

After having any seizures, drink cold water immediately as this will cool your brain and body immediately. If you are still feeling weak during the day, drink a frappe or smoothie as this will further relax your body. Make sure you always keep a water bottle next to you incase you have any seizures or health difficulty. Eat all 3 meals of the day and add fish and greenery vegetables in your meals. Get proper sleep. Watch a comedy program to reduce stress. Try going to another hospital and ask your neurologist to have an MRI done. Avoid smoking or anything that can affect your brain. Avoid being around Chemical factories. Avoid amusement park rides as this can worsen seizures. Good luck and I hope your health stays well.

[@michaelsantos8896]

Hi Annie my name is Felisha santos I hope you are having a great day with your family cause I’m having a wonderful day with my family I have grand mal eplisey but I take medicine for me I stay positive and I pray for my family and I’m always greatful for my life! I know god loves me and god loves you too and I have a lot of faith in you Annie I hope you feel better soon 😃💜🙏🕊🤗🍀

[@CarolinaBluez]

The blanking out are complex focal seizures.

[@anjachan]

I know black outs too but just for few seconds.

[@kennypollart9831]

I was diagnosed with absence seizures and I experienced the same thing. I am on the same meds as you and before I was stable I would have about 20 of those kinds of seizures a day for about 30 seconds. Its kind of weird where you space out and forget whatever happened when you have those kinds of seizures. There was one time I had a seizure-like that and I was looking to call someone and was looking at a phone and spaced out for about 30 seconds to a minute and had no idea what a phone was and no idea where I was and I couldn't talk.

[@SherryLownsbery]

I'd like to know what others do to make their living areas more epilepsy friendly.

[@alligatorboo5023]

Those spacey moments are actual seizures that you are having.

[@AnnieBean]

Are they? They dont feel the same. I just stare into space without realising but do it a lot. Normally seconds

[@alligatorboo5023]

@@AnnieBean spaciness could just be from your medication, but it sounds like absence seizures. The fact that you lost time worries me. I once drove 30 minutes to school and had no recollection of how I got from point A to point B. Thank heavens no one was hurt. I wasn't on medication and didn't even know I had epilepsy yet. I just got diagnosed this year at the age of 31. Sadly, when I went to a nurse practitioner after years of unexplained symptoms I had to force her to do blood work to check for diabetes, thyroid disorders, and even had two EKGs. I was told that I just had allergies and if I took some medication everything would be okay. It wasn't until I went into status epilepticus nine months later that I finally got my answer. I was having an array of partial seizures for years and they eventually progressed into generalized seizures. I agree with you about taking care of your body. Sleep, stress, and not eating have been my triggers. I really hope that I can get to a place of happiness and acceptance that you've taken hold of. It's very inspiring to see. Best wishes!

[@pwieland]

@@AnnieBean If you don't realise what you are doing they are complex focal seizures. If you are an aura you stay fully conscious and can remember everything. And yes, they are seizures - simple partial ones.

[@ocrasalt9325]

I went into whsmith I was OK at first then I picked up a magazine and went to the til which I don't remember which freaked me put the magazine wasn't interesting lucky I was able to cancel.

[@lina_ann]

As someone with tonic-clonic seizures I've always kind of been jealous of people who get auras. I just drop on the spot without a warning

[@Nikki3b0oxX]

My story is complicated . Mines started with auras . Usually butterflies in my chest or tingling or body starts trembling and then whole body stiffens . My first episode wasn’t like that but with time it started happening like that . The first one it just felt like a switch on my brain like verything just altered heart went from 0 to 100 and I became dizzy then 15 minutes later I fainted and these nice people helped me and got me to the hospital I remember the woman saying to her husband it’s like she’s seizing but I remember I wasn’t moving or nothing I was just staring into space (weirdest thing just out of it) when we made it to the Er I was having trouble talking and one of my legs wouldn’t stop trembling up and down . They didn’t assume seizure they assumed stroke so I didn’t get tested that day . After the next few episodes my body started to stiffened first my stomach and then eventually I had an episode where my whole body stiffened so bad I thought my head was going to burst (I was alone) . So a neuro put me on Kepra . For some reason a week into the medication I started seizing uncontrollably I mean they did not look normal . I was twitching spasming I couldn’t control it . So doctors said I was having fake seizures . But I can’t seem to understand why I have time lapses and bad memory . I tend to not remember my days even the same day I won’t remember what happened seconds ago sometimes . It’s frustrating I literally feel stupid . It’s given me so much anxiety . Like I have had the whole look at my phone blank for a few seconds not remember what I was doing and felt frustrated scenario often . This happens often with a lot of my normal daily routines . I’m scared . I wish someone who might be going through what I got through write me .

[@prophetessabigail3952]

Hello you’re not by yourself, I awaken around 3:30 am February this year. My left side shaking and trembling uncontrollably, so I s at up for bout five minutes. Laid on my right side, it started doing the same exact thing ( trembling and shaking). So I said, “I believe I had a seizure?!!” Later that day went to the ER doctor did bloodwork, CT Scan all came back normal🤦🏽‍♀️ Call my neurologist got and appointment that same week. Lo And Behold, Before my appointment my face, lips, started twitching and from one side to the other!! EEG done at doctors office facial twitching arms, legs, feet, arms, hands, trembling and shaking while EEG test going on!! Results showed I had Partial Seizures. Just had VEEG at home for 72 hrs. results showed no Seizures. I’ve read about having this test done, it says it will not show you having seizures, it’s not going to pick it up. But you have seizures these neurologist they don’t know, you have to be your own advocate!!Pray you feel better as well, I also suffer with anxiety to, taking Kept a 500;mg twice a day 12 hrs, then on Cymbalta for my nerves ( anxiety ) 60 mg ,morning and at night( twice a day).🙌🏽🙌🏽🙌🏽

[@sophiam3831]

Are you still going through this? Have they figured anything out for you? I just had my very first grand mal on thanksgiving and I was in the ICU for 6 days in the hospital for 2 weeks and I was hooked up to and EEG and EKG the whole ICU time had 6 small seizures in ICU after the grand mal my mind has been so blaank like you said yours was I look at my phone and it’s like I don’t even know what I’m looking at I didn’t remember my moms or boyfriends even my OWN name the first few days in the ICU my memory has finally started to come back im on keppra 1000mg and topiramate 100mg a day and I feel so foggy im so angry. (Which is not like me at all 😭🥺) I dont feel myself. Let me know whenever you get the chance I’d greatly appreciate it I hope you are feeling much better and wish you luck on your journey!!(:

[@furqaniqbal7223]

It's better you ask your neurologist to do an MRI for better results. If you are not satisfied with your doctor, it's better to check with another hospital / doctor Ask your doctor to give you a medicine called lamotrigine or Lamictal Reading your health difficulties, I have some suggestions which will help you. Whenever you feel you have had a seizure, you should immediately drink cold water as this will cool your brain and body immediately. If you still feel weak during the day, you should drink a frappe or something ice blended as this will further relax your body. Don't miss your full day meals. Watch a comedy program to take away stress. You should avoid amusement park rides as this can worsen seizures You should avoid smoking or anything that affects the brain including being around Chemical factories and detergent products. I hope all of you have good health.

[@84953]

Hi Annie! You were saying before that you had complex partial seizures. Did you have tonic clonic seizures after that? I'm just curious because from what I understand, the difference between complex partial, and partial seizures is the the complex partial seizure is a predecessor to a tonic clonic seizure, much the way an aura can be a predecessor to a TC seizure. From what you're experiencing now, it sounds like you're having absence seizures. I don't know if you've had another EEG when this started or not but it's something to think about. It also could be some type of medication reaction. Glad to see that you are doing so well with it and still having a full life!

[@pwieland]

Hi Nathan, Complex partial seizures are not a precursor of tonic clonic ones, but a kind of temporal lobe epilepsy which makes you go semiconscious and do strange things without remembering these. They can start with an aura which is a simple partial seizure on its own. Rarely, these focal seizures can secondarily generalise (involving the whole brain) which would be a tonic clonic one. I've got these complex partial seizures myself (without them becoming generalised), so I can sympathise what you are going through. Good luck on your journey

[@christianrossmann1904]

Thanks for sharing! I am undergoing a very similar journey like yours. I was wondering, do you experience some thing like memory loss, either due to the meds or the seizures itself? I am just asking because ever since my episodes started and I am on medication, I feel like I can’t remember stuff anymore, like where did I put my keys, or what did I eat for dinner last night? Just curious what your personal experience is with this?

[@ocrasalt9325]

I get this with memory

[@christianrossmann1904]

ocra salt do you have the same epilepsy thing going on?

[@ocrasalt9325]

@@christianrossmann1904 yes I do. For some reason my absence seem to last long then 20 minutes I can have about 5 a day

[@christianrossmann1904]

ocra salt how long has this been going on with you?

[@lynettesunley-hulton7898]

Memory loss is quite normal in some cases if concerned about it please see your medical professional.