Worried Newbie =(

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Hi guys/gals,

Im a 32 years young, single mum of 2 and recently have been referred to a specialist for epilepsy. I havent been diagnosed yet, but my doctor is pretty adamant that im experiencing epileptic siezures.

My symptoms started just before christmas, but in the last 4~5 weeks have become more frequent and more frightening. 2~3 times a week, normally evenings, after the kids are in bed, and im starting to relax, I get a tingling numbness in my arm, next thing the earth opens up beneath me ( only way i can describe it ) and i feel like im falling =S ( it scares the fudge outta me )

I dont believe i go unconcious at all, though afterwoulds i can be very confused, and extremely tired / lethargic. Ive ended up going to sleep where im sat as walking is really not an option my legs feel so weak after.

Other symptoms i have had, and get quite often, but not at the same time as what ive described above is seeing orbs during the day, ive had my eyes checked 3 times, there is nothing there to cause them ! With the orbs comes a light headed ( daydreamy ) feeling.

So far ive had all the routine bloodtests, pb checks, even had my heart checked out and there is nothing wrong.

Ive suffered from depression on and off since my second child was born, also a long time sufferer from migranes, I presumed it would be one of those causing these episodes, so was a bit shocked at the last appointment.

Kinda came here hoping you guys would tell me its not epilepsy, and it is just the whole stress thing.

Worried, but wishfull thinking Bunny
 
Hi Bunny, welcome to the site.
Sorry we can't tell you it is or it isn't, only a neurologist or epileptologist can make that decision. Epilepsy is such a vast, and unfortunately still quite undiscovered disease, and there is a whole realm of possibilities as well as seizure types.
When you say your doctor is adamant, is this a specialist or a GP? If it's your regular family doctor giving the opinion I would ask for a referral to a neurologist, a GP is not even close to being qualified to make that call.
And what is it that makes them 'adamant'? What are their words? Also when you say you've had all the routine tests, did they send you for an eeg and mri? These are the two most routine, and telltale, tests in diagnosing epilepsy.
If you can fill us in more we'll try to help best we can.
 
Hi and Sorry, Its my GP !! She has referred me to a specialist, still waiting for the appointment to come through though... And when i say adamant, i asked if there was any possibility it could be stress, or a return of depression, she was very insistent that it wasnt them and that it was epilepsy :S

Ive already had tests to rule out heart problems, blood pressure problems, blood sugar problems so all those were instantly discounted by her too.
 
Okay, so there's still a ways to go before any conclusion. If it can ease the stress at all, try not to put all your eggs in her basket, so to speak. Like I said, only a specialist can make that decision, and there are still the standard tests to be done as well.
I'm not saying she's right or wrong, just for you not to lose your mind at this stage as from what you've gone through so far, this is not how epilepsy is properly diagnosed.
 
Thanks =)

And i know, Im a worrier... And my current doc isnt one of the best ive ever had =/ Im still holding out for stress being the cause of it all.. Just hoping this appointm,ent comes through b4 i do lose my mind =S
 
Well never hurts to educate yourself either. Have a look at some epilepsy websites and see if anything relates. Also a good idea to document every time it happens , as you say it's always at night, taking notes and times can help to pinpoint triggers of these feelings.
Were you really tired? Upset about something? Not feeling well? Writing anything down to take into your appt can help give the neuro a general idea of what's been going on.
 
Like qtowngirl said educate yourself if u can and I know in the aituation it will be hard but try not to atress cause it can bring on all kinds of things and welcome to cwe
 
Bunny.... remember during your research that you were seizure free for 32 yrs. There has been something that has lowered your seizure threshold. There are a number of things you might consider as you collect your medical information. Sleep, stress, nutrition, vitamin and or mineral deficiencies, blood sugar levels, hormonal levels. Over time any of these can cause neurological problems.

Doctors might tell you none of this matters, but that is completely false. There are known connections to any of these and put them in combination with others and you have a seizure waiting to happen. Everyone has a seizure threshold.
 
The scariest part is not knowing for sure.
If it is epilepsy it is not the end of the world! My seizures get worse 6 months postpartum for some strange hormonal reason and they would come on as soon as I sat down to relax after my 3 kids went to bed or 2 went to nap and I was relaxing with my eldest 5yr old watching cartoons.
They sound like they could be partial seizures to me but alot of things can mimic partials.
Have they worked up your thyroid levels? It sounds like you don't want it to be seizures but if they are...it's not the end of the world! Trust me....you'd rather have something diagnosed than still continue to have these scary episodes and be told there is nothing wrong.
I'm sure the last thing you want to do is worry about your health when you have two kids on your own and depression alone is tough enough to deal with.
Let us know how things go!
 
Hey, and thanks..

Still no appointment from the specialist o_O, had my bloods checked ( thyroid, sugars, liver and nutrition ) ive just been told to eat more meat, though im already getting plump on the meat i eat already XD

Relaxing seems to be the trigger for what ever it is ! Last night was pretty severe =( Even woke up this morning feeling liked i'd been hit by a bus !

Started just after id gone to bed, had the falling feeling, but after that passed my right leg & hand felt like they were burning and numb, and my foot started twitching quite eratically o_O, Think i must have passed out at that point, as next thing i know im being woken by my daughter at 6:30 am ( I'd slept through all my alarms =/ ), feels like someone has drove a bus over me through the night to =(

Spent the whole of this morning feeling like im still dreaming, light headed, and got a headache thats driving me nuts !

Cant wait to get this sorted, just hopin it aint gonna get any worse =(
 
I hope they do get you sorted and in the near future! And I really hope things don't have to get worse before they figure it out.
 
Hi guys,

Just a quicky, if i am diagnosed with epilepsy would i have to surrender my drivers license ? I use both a car and motorcycle ( the motorcycle got me through some of the worst days of my depression :( don't think i'd cope without it ).

Ive already had to inform work, and they have been honest with me, i could face losing my job >=/ The company insurance won't cover me. Nice of um to add to my worries..
 
It depends on your state's individual rules. In Massachusetts for instance, "An individual with epilepsy will be considered eligible for a driver's license if s/he has been seizure free for 6 months and submits a detailed physician's report and recommendation that s/he may drive safely." On the other hand, there's no mandatory reporting requirement for the doctor, so it's honor system. I waited the 6 months, but I didn't tell the DMV, so I didn't have my license suspended, and didn't need to re-apply for it.

If your seizures are the kind where you lose consciousness, and are uncontrolled, then you should definitely consider not driving, regardless of what the legal requirements are.
 
Hi Bunny,
As Nak said, everywhere (and every doc) is different, but there is one golden rule no matter what state/province/country - if one is having tonic clonics then legally there is no driving. Not every place reports/suspends your license, honour system is fairly common, BUT... if your doc says no driving and you drive anyway... if you get caught the consequences can be devastating. It's a law expected to be followed the same as any other, ie: drinking and driving.
From everything you've said you haven't had a seizure where you lose consciousness, so it may not affect you at all even if you are diagnosed with epilepsy. In the end, it's all up to the neurologist, they really 'hold the keys.' They can also take you off the road without tonic-clonics if they feel the seizures you are having alter your consciousness too much to drive. But as I said, you aren't having the guaranteed seizure-type that takes you off the road, so try not to worry too much right now, stress is for the birds.
 
Idk what country I live In but in the u.s. Cant just fire u and ur doctor more than likely will report dmv about ur e temporary dependssorry on how long doc says til u get it bak seizure free.
 
Responding to your question about driving, the laws are different from state to state, as someone said. My personal experience- I had been having Simple-Partial seizures for about 6 years until one generalized into a Tonic Clonic. My first neurologist told me not to drive until I was stabilized on my meds (I think it was 3 or 4 months). I didn't know until a couple years later when I switched neurologists that the first neuro was supposed to report me to the DMV and he hadn't. So my new neuro did. Since I hadn't had a TC since the first one a couple years before, I didn't get my license suspended. But I had to submit a form every six months from my doctor reporting my condition and his opinion on whether it was safe for me to continue to driving (I was allowed to because I the seizures I continued to have were Simple-Partials that didn't alter my consciousness at all).
I was pleasantly surprised a couple months ago when I got a letter in the mail saying that my case at the DMV was closed and I no longer had to submit the form unless my condition changed. I realized that it was because it had been 10 years since I had had the TC. My doctor had reported the date of my TC seizure and then I only had to keep submitting that form every 6 months until I reached the 10-year mark. :clap:

Anyway, I hope you get an appointment with a neurologist soon and get things figured out! I'm kind of surprised, though, that if your GP was so sure it's Epilepsy, why she didn't start you on anti-epileptic drugs while you wait for your appointment with the specialist. That's what my doctor did. I went in to see him the morning after I had my TC (I'd had it in the middle of the night), and he started me on Dilantin right away. Maybe it's because your seizures, if that's what they are, don't alter your consciousness and mine did.
 
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Hi. thanks for the replys. im in the UK, unfortunatly they arent so quick to dish out meds here. ya have to prove your sick 1st, even then you only get them if they arent too expensive for the nhs to subsidise =\

Phoned my gp this afternoon to chase up my referral, and i could be looking at waiting up to 8 weeks =S
 
bunny the uk needs to step up then cause everybody need there meds plain and simple no grey area in that.
 
Hey guys,

Just an update !!

Ended up in A&E last monday after 3 bad episodes :( They booked me in for a CT scan the very next day, which came back clear :)

I now have an appoinment with the neuro ( speeded up by the A&E visit ) on the 17th April ! So hopefully all will get sorted soon :)

I stopped driving, though i have not surrendered my license yet ( and holding off telling my insurance as the premiums will fly up =/ ), im waiting for a formal diagnoses so that i can get other travel arrangments sorted properly, for now my friend is able to bring me to/from work.
 
Sorry for the episodes, but hope you get some answers when you see the neuro on the 17th.
 
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