Hi, any suggestions?

[Emmy123]

Hi everyone, i hope you are all well as can be

my name is Emmy and ive been suffering from grand mal/ tonic clonic seizures for 19 years now. in the past ive had all the cat scans, eeg's blood test, observations imaginable and been told i was putting them on, holding my breath to make myself pass out everything to say i didnt have epilepsy. then the doctors decided to say actually it is epilepsy. here take epilim. so i did and it didnt work. then they changed their minds again and said its not epilepsy but noxious stimuli caused by stress(now i was a kid when this supposed diagnosis was made and did not even know about it at the time) they said i would grow out of my 'fits' and to my pleasure it appeared i had. they slowly grew less and less frequent until at the age of 14 i dont remember having a fit in the day until i was 17 now i know that my seizures are always triggered by stress, they tend to happen about 16 hours after the stressful event ( altho as a child it could be anywhere from minutes to a day) anyhow, since i was 17 these fits have been at most once a year, there have even been periods where i have been seizure free for 2 years.

before a seizure i always get an 'aura' i get a strange sensation in my head which ive always called a 'fizzy' head, no NOT dizzy, more like the fizz of a bottle of cola fizzing up in my head. i get a bloody/ metallic taste in my mouth after a second or two i begin to feel queesy and light headed, i get extreemly hot and sweaty, go white as a sheep and feel claustrophobic. i cant bare to be touched. now in the past this was it i would know to lay down somewhere safe and then i would'go' have a tonic clonic seizure and when i came around after the room would be spinning and everyone would sound as if i was underwater and they were talking to me from above the water. i would also tend to loose control of my bladder at some point altho i dont remember if its during my fit or after. however last weekend i had my first tonic clonic in 2 years. ( a year ago i had an aura but managed to avoid the tonic clonic stage) i got all the same signs/ aura it was about to happen with the added symptom of excruciating lower abdominal pain before any other symptom which i have never experienced before. i went into full on tonic clonic seizure and when i came around i knew it had happened i vaguely remembered feeling like i was about to go and within a minute i lost control of my bowel (HOW EMBARRESSING!) after this it seemed to me that i recovered much quicker than i ever used to and i certainly slept a lot less. altho it did leave me feeling not quite right for 3 days after.

anyway the reason im writing all this is, that i am going to go back to the doctors next week to tell them about this, i want a proper diagnosis as upon seaching 'noxious stimuli' online it seems my inital thoughts (that, that is the term for stress factors) is indeed the case and that i have no diagnosis yet. i want to know what is casuing these episodes and how i can stop them.

does anyone else have anythign like this? know anyone that does?

its so frustrating having had this for so long and not knowing how or why.

could it be linked to my premature birth? ( i was for the time seriously premature, about 2months)

anyway, cant think what else to say now.

thanks for reading

Emmy

 

[skillefer]

Hi Emmy! Welcome to CWE. I also have tonic clonics. And yes, I know the embarrassment of losing control of ones bladder. I've been fortunate to not lose control of my bowels though. My medical condition is, according to my doctor, "idiopathic seizure disorder." this is basically the nice medical way of saying "you have seizures and we don't know why". My great uncle had one seizure at the age of 40...and my seizures started after a brain injury when I was small. the seizures could also be attributed to my being hypoglycemic and hypothyroid. there's no way to really be certain and nail down the cause. So, instead, we look at treating the seizures. I'm on thyroid medicine, watch my blood sugar, and take Dilantin (phenytoin) for my seizures. Yes, your seizures cuold be linked to you being a preemie. You need to remember that it's the brain that develops the most the last trimester. If you came out early, your brain was probably not completely developed. The frustrating thing is that you may never know exactly why. You're lucky in that you have auras....I didn't used to. Now though, my seizures are changing, and I do get auras. And yes....seizures can change over time. Also, don't bve surprised if it takes a while to find a med that works for you. Also, meds can start off working, and then quit working over time. So please don't think that meds are a magic bullet. They arent'.

There are some things that you can do to help them be more effective.
1. Eat 6 small, healthy meals a day. (By small, I mean it fits on a dessert/salad plate. And by healthy, I mean for every carb, you have a protein. Low blood sugar can trigger seizures.)
2. Get 7 hours of sleep each night. (no ifs, ands, or buts)
3. Quit all caffeine. (No sodas, tea, coffee, energy drinks, mate, etc....)
4. develop a healthy way to deal with stress (walking, prayer, meditation, etc....)
5. don't take OTC meds for colds (many of them have stimulants)
6. quit smoking (its dumping chemicals in your brain when you need to keep your brain calm)
7. If you drink alcohol, severly limit it. (one maybe 2 drinks a week....alcohol interacts with our meds)
8. Start keeping a journal to try to figure out what your triggers are.

The 3 most common triggers are stress ( and this includes the stress of being physically ill or overweight...not just emotional), lack of sleep, and poor diet. Your body can develop sensitivity to chemicals that are added to foods. So I usually advise staying away from fast food and prepackaged food. Or in other words, shop the edges of the grocery store. Hope this helps.... feel free to ask questions, chime in, or just vent when needed.

 

[ceiliclare]

Hello and welcome!

Sorry to hear it took so long for your diagnosis. I'm new too, and I think skillefer has answered alot of your questions. I just wanted to add that I found an interesting article in Neurology Now magazine-if you google "neurology now pnes seizures" you should find it, if not contact the epilepsy foundation of america at 888-576-9996 they can point you in the right direction and get you a free subscription. Anyway PNES seizures are "real" seizures but are inherently stress related, for this reason additional medication is sometimes prescribed and more effective than anticonvulsants alone.

Good luck,

ceiliclare

 

[flinnigan]

Hi Emmy,

Welcome. I don't have tonic clonic but rather Complex Partials. Everything you experience is exactly what I experience except bowl and bladder loss. I've come close and always have diarrhea afterward but have always made it to the bathroom. I don't like the term "idiopathic seizure disorder" or "psychogenic seizures" for the same reason. I think they're a cop out on the medical fields end. I'm fortunate that they found a lesion on my first MRI so at least I know why I have them. There's a new MRI helmet in the works that is diagnosing previously undiagnosable Epilepsy. Its expected to be out later this year for commercial use.

Skilli has great advice mine are stress and diet triggered. So I watch that as much as I can. From some of the words you used I assume your in England. ElaineH is a great source of info for that part of the world and there are many others. Good luck and spend plenty of time here its incredible how much info there is here.