Hello

[LuminaryLucy]

Hi. Not sure where to begin.

i 'fainted' at work in January and it kept happening every couple of days and i felt constantly unwell. i had a few bouts in the hospital while they tried to find out what was wrong. I was tested for heart problems, auto immune diseases, cancer, brain tumors, all things bizzare and exotic. my GP was juggling between anxiety and chronic fatigue syndrome when he sent me to a specialist who had a stab at epilepsy. no one else had even thought of it, but i am exhausted after fainting and there is now 4 known people in three generations with it. so he wrote me a script for 1000mg of epilim and that was it. eeg and mri were all clear - get on with life.

things improved, i started driving again. but i was still have 'events' regularly. this went on for months and we just worked around it. everything was difficult. it was hard to understand - what was happening to me didn't match what you expect. finally my circle of loved ones pushed me into seeing a neuro.

she did a conclusive work up and we had more info; what happens? i feel sick, i smell things no one else does, i get a strange look on my face, i get tingles - like pins & needles, blurred vision, i become paralysed and can't speak/or my speech is slurred like i am drunk. neuro ran a 24 hr eeg. she didn't expect to find anything but we did. i couldn't be more excited - isn't that a bit pathetic. but it is great to have proof to say conclusively to people yes it is epilepsy.

am banned from driving again - oh well; i have to ride my bike or walk which offsets the weight gain. i have to go for 6 weeks without a single seizure - last Friday i had about 6 i think, so that might be a while. and my meds are being slowly increased til we hit that magic amount for me.

this was the last thing i expected at 36. but one of the things we've discovered in hindsight is that i have probably been having seizures since i first 'fainted' in my dad's arms when i was 15. i convulsed but when i saw a doctor she said some people just faint that way and when it happened every year or so, i thought that was just normal for me. six months before the seizures kicked in to become a daily affair people could see a change in me. i made constant errors at work and my grades at uni suffered. i got a goldfish bowl for a brain - mid sentence the goldfish would get around the bowl and that would be the end of that. i can't make decisions, i can't remember things, i stutter some days as i can't get the words out, i am completely disorganised. hopefully this will all improve.

who am i aside from all this? married to an amazing man. a mum of two adorable sons aged 8 & 6. a daughter to two 2 people who a so supportive. a not - so - great uni student at the moment. i am studying teaching - and it can wait a year or two til i am ready. and someone who is lucky to be surrounded with so many loving, loyal and wonderful friends who you don't realise how great people are until you are humbled by being unable to do a thing for anyone else. that has been a huge life lesson for me.

have a lovely day. thank you for listening/reading my story. :cheers:

 

[Ruthie]

Welcome to the site. I'm new here as well. Hopefully there will be lots we can learn from folks who've dealt with this stuff before us and 'know the ropes'.

I am glad to hear you have a supportive family and friends. You are right--that is a blessing!

What medication did they put you on? How are you doing with it? Did you have to do your 24 EEG in the hospital or were you able to get hooked up and go home with it?

Hopefully now that you have a diagnosis (and thus, presumably an effective treatment plan) you won't pass out anymore. I pass out a lot, not from epilepsy but from another condition and it is miserable and dangerous.

Take care of yourself!

 

[Nakamova]

Hi LuminaryLucy, and Ruthie --

Welcome! Definitely explore the site -- there are different forums for chatting, venting, asking questions, etc. and you can search for information on specific topics as well.

I was first diagnosed with epilepsy at 35, so I know how strange that can seem. In retrospect there had been tiny warnings in the past, but nothing to worry about or make me seek out a diagnosis. There is so much that can be confusing about epilepsy, and so much that is unique to each person's story. One of the many things I've learned from this site is to be pro-active about my health -- to make sure the doctors are listening and responding, and to take responsibility for getting information and support if I need it. And also to try and take a whole-body approach to maintaining my health and quality of life.

Best,
Nakamova

 

[milkymum]

Hello I'm new here but I do have a bit of experience with epilepsy. One of my aunts got diagnosed with epilepsy in the same way she keeped fainting and after my grandmother pushing for tests they got the diagnose. She had a feelign that my aunt was epileptic as her sister was diagnosed with epilesy but she had the staring version. It helps loads having family and friends about for support but it is so scarey as well. My youngest son was refered to a pedeatricion because he always falls and has blank expressions and does know he has fallen and very raely response to things that has happened to him which is very unusual in toddlers.

Take car eof yourself and I hope the treatment route they take with you works and you don't faint again

 

[KellyD]

Hi Lucy, I just wanted to say hello, it's nice to see another Aussie here. I was diagnosed last year at age 27 and then my 9 month old son was diagnosed 3 months later (he is nearly 2 now) so I know how it is to find this out about yourself when you least expect it. I'm glad you have supportive friends and family and finally have an answer, that must be a relief. Talk soon!

 

[libbyl]

hi lucy------I am also new here.have you ever read the bio of Joan of Arc,rumor has it that she was part of our group.you sound as if you have some of the symtoms I always read about.this is a great site.I ENJOYED YOUR POST.

 

[LuminaryLucy]

replying to your replies

Thanks for all of your kind replies and sharing of information.

Ruthie: What medication did they put you on? How are you doing with it? Did you have to do your 24 EEG in the hospital or were you able to get hooked up and go home with it?

I was initially prescribed 2x 500mg Valpro. This is the Australian generic of sodium valproate in coated purple tablet form. After my first script ran out the pharmacy filled it with Epilim which is the branded version of the same thing. I think the equivalent in the US is Depakote or something like it. I must add that switching between generic and branded sent me off my rocker. I was doing well - my husband said I had started laughing again and seemed well and had 3 good weeks then it all went to pot. My neuro said that that can happen and NEVER switch between generic and brand name again. Apparently they only have to be about 80-90% compatible (don't quote me on the details here but you get the picture) and in some people the difference they cut the drug with makes all the difference. So now I am still on Epilim but over the last 4 weeks have increased by 250mg per fornight and am taking 2x 500mg in the AM and 1x500mg in the PM. She will check me again next appointment to see if i need a further increase and/or different meds. All depends on next EEG and if I am still having seizures.
The meds are awful of course but in comparison to option B i love them. they make me nauseous and uncoordinated. I have dropped and broken a ton of things, lost my balance and walked into things, my spatial awareness is about 1/2inch off centre. My hair is failing out everywhere, and i have gained some weight and am tired and lethargic. By 8 o'clock at night i am a drooling zombie because i am so tired, i just need a heap more sleep. But i noticed when i first took them this lasted about 6-8 weeks then i adjusted. I think i am just adjusting to the new levels in my body and hopefully things will settle in time.
The 24hr EEG was as an outpatient. They stuck all the nodes over my head and then put a stocking/beanie looking thing on my hair which swept back everything keeping it all tidy and led to a little handbag with the battery pack and data card. I had an allergic reaction to the paste that glued on the nodes because i had 2 big red lumps on my forehead. So it was great to be able to go home and be normal and not have to stay in hospital or anything.

Nakamova: I was first diagnosed with epilepsy at 35, so I know how strange that can seem. In retrospect there had been tiny warnings in the past, but nothing to worry about or make me seek out a diagnosis.
One of the many things I've learned from this site is to be pro-active about my health

I don't find the diagnosis strange, getting other people to understand is hard when you don't fit the tonic-clonic stereotype from TV shows. I completely agree with you about being pro-active in managing your own health, i am learning. That is something else i have found and i don't know if it has anything to do with epilepsy, my personality has changed. I would have been described as an Alpha type but i have lost some of that and seek other direction from others and don't trust my own judgement anymore, maybe its a temporary thing. Will wait and see.

milkymum: What happens with you son sounds familiar to me. Gosh i hope they can give you some answers, as an adult i have trouble explaining whats happening and understanding what i feel in my body that, must be so frightening for you to watch. I hope that you get a conclusive answer very quickly.

KellyD: Wow you got the double bunger! Just as you are trying to sort your own health out you get a double helping. That must be really challenging. It is a niggling fear in the back of my mind now that one of my children will have it too. Niggling because if it is - then so be it, what can i do. But at the same time as a mum you want nothing to touch or harm your children in any way. Our family is discussing how many relatives we know or think may have E, especially when we go back a couple of generations.

libbyl: Thank you for your kind words. Joan of Arc? well at least we are in good company, i will check that out.

So sorry I have rambled on. I can be like that, I think I should get out of the house and go for a walk, obviously I need to have a chat today........lol. Thanks for bearing with me and my enormous replies.

have a lovely day. thank you for listening/reading my story. :cheers: