Hi new to this

[Laurab1989]

Hey everyone my name is laura and im 28 was officially diagnosed with juvenile myclonic epilepsy 3 years ago ive been free from my tonic clonics 2 years until christmas eve i had 3 bit my tounge so badly couldnt talk or eat and got a black eye and bruised forehead my 9yo step daughter caught me from smashing head off glass dining table.
Ive joined here as i want to speak to people who understands the feelings of how i feel my partner is amazing.
Since my diagnosis ive lost friends my job my confidence.

 

[Nakamova]

Hi Laura, welcome to CWE!

It sounds like you've got great support at home. Having a loving caregiver can go a long way when dealing with something as frustrating as epilepsy. I hope you feel better (in all ways) soon.

:hugs:


Nak

 

[Sabbo]

Hi Laura, welcome to the site! This is a great place for support & info. A supportive family is most important, & its great that your family supports you.
I've had epilepsy since childhood, but it wasn't diagnosed until after I had 3 or 4 tonic clonics in 1987 (that's when weird feelings that I often complained of were diagnosed as simple partials). About 18 years ago, I began to have complex partials.

 

[Laurab1989]

Yeah ive got great support.
I just want to be able to talk to other people who understand how i feel there isnt much support here in scotland like support groups my partner moved us out to a small village in the countryside which i love as has plenty of walks with dog.
My neurologist says i was born with it my mum had me up and down at doctors as a child wanting me tested for absence seizures she was told i was a daydreamer when i was about 15 i woke up covered in blood on my temple and black eye i thought i banged head in sleep of bedside table it happened again when i was 17 now i think they were seizures in my sleep.
We have a labrador sam hell be 1 tomorrow we bought him to get me out house hes had no professional training but my oh says when i have seizures he pushes everyone away and licks my face until i come round.

 

[Porkette]

Hi Laurab1989,

Welcome to CWE! I've had myoclonic seizures until I went on vimpat and that stopped that type of seizure. I still have absence and complex partial seizure after 2 surgeries to help reduce them but one thing I've learned that has been a big help to my Dr. is keeping track of my seizures by writing them down on a calendar I write down what time the seizure happened and the type of seizure I had, by doing this my Epileptologist was able to see a pattern in my seizures and saw most of them were hormone related.
I had a sleep study done along with an e.e.g and e.k.g. and my Dr. saw that I was having seizures in my sleep about 1-2 hrs. before I would get up each day. You may want to ask your Dr. to do the same thing. One thing that has really helped me a lot is the cbd (medical marijuana) my Dr. asked me to start using it and I'm amazed at how much my seizures have decreased. You may want to look into it if you are interested. I wish you the best of luck and May God Bless You!

Sue

 

[CQ:)]

Hi Laura

Welcome to the group.
I’ve had epilepsy since I was 9 months old (now 40) but had breaks between my seizures. I was 21 years seizure free from 3 until the seizures returned in May 2002 when I was 24 . I had simple/ complex partial seizures which we couldn’t get controlled with meds so I had surgery in March 2011. I was 2 years seizure free until my partials returned in 2013, 1st as simple then slowly progressing as complex again.
Luckily my seizures are nowhere near as bad or as often as they were pre surgery and I’m still able to live a normal life.

I’m lucky as I’ve always had great support, my family has always been great support. I don’t have many friends (sort of a loner) but a best friends who I’ve been friends with for 25 years since school.

We have a labrador sam hell be 1 tomorrow we bought him to get me out house hes had no professional training but my oh says when i have seizures he pushes everyone away and licks my face until i come round.

It really is amazing how much animals understand, my parents used to have a kelpie/Labrador Cross Lilly. Lilly looked a little like the kelpie (Australian cattle dog) but had the nature of a Labrador. Before my surgery when I visited my parents if I had a partial seizure while out there Lilly wouldn’t leave my side for the rest of the day and follow me. My parents even say she’d alert them something was wrong so they’d gone to check on me.
Sadly Lilly was put to sleep last year at the age of 13 but she would’ve made an amazing companion dog as she not only looked out for me but my dad who has health issues.

 

[patrickh]

Family are important. I'm on the other side. My son was recently diagnosed having Tonic Clonic seizures. Last one was Christmas day.

I wish I could swap places with him. It breaks my heart when it happens.

So far everyone of his seizures have been at home.

He knows his Mum and Dad and sister are there for him and We try not to show him we are concerned and act as normal as possible, It is new for us all so we are still getting over the shock.

I hope you get some extra comfort from the people on here.

regards

Patrick

 

[Laurab1989]

Thanks everyone nice to have people who understand how i feel and also people who understand how my partner feels i had 3 tonic clonic on xmas eve the 2nd one my poor step girl was with me shes only 9 she was terrified and apparently screaming.
Sam my labrador is my guardian when im home alone he even sits at bath while i shower until i come out safely.
Unfirtunately you cant get medical marujana here in scotland the most used meds is lamotrogen which im on and keppra which i had but it made me have severe mood swings.

 

[CQ:)]

Sam my labrador is my guardian when im home alone he even sits at bath while i shower until i come out safely.

My parents old labrador / kelpie Lilly was the same, I used to sometimes visit my parents & Id trained Lilly to come in the bathroom with me. If I was having a shower she'd lay on the mat until i was done & if I had a bath she'd sit by the bath tub.

Once I had a partial seizure while in the bath, only my mum & i were home so i had the bathroom door ajar. I had an aura so I sat up straight and stayed like that until i came out of the seizure. I remembered Lilly going off then when I came out of the seizure she was back in the bathroom.
We think she may have gone to find my Mum who was busy doing something.

 

[DEEMO :)]

Hi Laura

I am also 28 although I have temporal lobe epilepsy. I take Lamictal (lamotrigine) as well. I used to take Keppra and found I had massive mood swings. I was very angry all the time and I was taken off it too. I am on dual therapy so I also take Vimpat. This was my miracle medication. It was my 8th medication and I finally found the combination that worked. Like many people on this sight I still have the simple partial seizures (auras). They feel pretty nasty.
Living in a small village in Scotland sounds beautiful. I hope it goes well for you there. I live on the East Coast of Australia. As much as I love the beach I think I would love to live in a small village for a bit.
Wow you guys are so lucky to have dogs that are very supportive. Looks like I now have my reason to get a dog ;-)
I think a lot of people with epilepsy have lost friends, struggle to make friends and have issues with their work. Unfortunately epilepsy is very misunderstood. I acquired epilepsy when I was 22. I remember everyone around me had not had any experience with epilepsy before so they freaked out a bit. I guess those that stick around are the best people to have in your life.

Dani

 

[Sabbo]

I've taken just about every anticonvulsant out there. I am allergic to Tegretol, Depakote, Keppra, & Lamictil. I'm on Topamax Zonisamide & Vimpat. I was on 400mg/day of both Topamax & Vimpat, which I liked, despite averaging 1-3 breakthrough seizures/month. I am, however, trying to switch from Vimpat to Zonisamide due to cost (thanks to our new insurance). I wonder what it will be w/o the Vimpat in my system.

 

[Laurab1989]

Thanks everyone yeah we got sam last year at 8 weeks old i bought him as i got ill health redundancy my partner lost his labrador also sam and he was heartbroken so we bought him and hes helped hs both i really struggled with everything and became really depressed so i didnt want to live and my partner found me i stopped breathing and had to be resusitated i got the help i needed i do regret what i did and now we have sam.
Hes now 12 months keeps hs on our toes and loves his walks theres a hill hike near us which we go once a year takes 3 hours my partner thinks its funny as me and sam both then sleep 3 hours when we get home.
Moving here has been best thing for us 3.
Wer going on our first holiday in march to a log cabin cant wait.
It is lovely here but as i dont drive i sometimes feel a bit suffocated but i met a friend who owns a cafe so i work there 2 hours a day doing dishes and cleaning.
I dont take baths as im to scared but i know im safe with sam here and my partner my partber says he pushes him out the way to get to me lol.
This forum has been a god send to me im so glad i found it.