introduction..and advice.

[rjay]

hi, my names jonathon and i'm 19 years old.

over the last 5 years i have had 3 'fits' where i have actually passed out and had to go to hospital.

what seems to generally happen is i get a feeling of deja vu, my sight goes blurry and i fall down.

after the first 'fit' which happened on a friday night while on the phone in town trying to arrange where to meet my mates for a drink. i had two tests done. one with loads of electrodes stuck to my head and the other i think was a eeg (big space age thing you lie in!?) they both came back as normal and the general feeling was "its very likely you won't ever have one again"

the next year the same thing happened. this time i was in a practice studio with my band, it was a warm summers day, locked in a soundproof room and had been a very stressful time trying to get a new song written.

then i was fine for nearly 4 years until i was walking through town (again summers day) talking to my friend and bam.. everything became very blurry, i couldn't string a sentence together and had a major feeling of deja vu. i then collapsed again.

after three times of turning up at hospital they finally decided its not just a few one off happenings and proceded to book me in with a neurologist, his opinion was that i had epilepsy. he told me to look after myself, get lots of sleep everynight and because i could not decide if i wanted to go on medication said he would send a letter to my gp.

it then became one of those things where i was of the opinion. if it only happens once a year its not such a big deal and medication may cause more damage than the 'fits' themselves. so i just got on with life always worrying a little when i was out.

since then i worked at a supermarket for around 8 months and although there were many times where i felt i may loose it i kept going and got through without any 'fits' lots of headaches and feeling faint though. which again made me think, maybe its something i just have to accept is there and get on with life.

my latest experience had led me to question my previous theory and want to find out more about the condition i may have and what i can do about it.

me and my girlfriend broke up this sunday and i had a very stressful day packing my stuff and moving back down to my parents. i had a very heavy night of drinking on the sunday going out with old friends and generally trying to forget what had happened and for the last few days have been drinking more than usual and not sleeping very well at all.
today, while i was viewing a house with my mum i was looking around the garden when i felt really bad stomach ache, then i got very hot and sweaty and i then lost control of my legs and couldn't walk properly (i kicked this poor mans dog while trying to walk over to the grass!) anyway i made sure i got down on the grass and lay down for a while which made me feel much better.
with the confidence of feeling better i carried on looking around the house, when i had exactly the same experience. but during both i never passed out and did not have the feeling of deja vu.

my main issue that i have now begun thinking is i want to prevent this happening. i don't like the feeling that i could just go at any time and have no control over myself. and in moving to university in the next two months (where i'm sure there will be quite a few moments where my body is put in the wrong conditions. drinking, late nights, stress) I am wondering if i might be better off on medication?

my worry is side effects and because i do not have 'fits' very often there will be no sure way to find out if the meds work?

cheers,
Jonathon

 

[Kansas Educator]

Welcome Jonathon. You'll find lots of friendly supportive people here.

As far as going on meds goes, only you can decide that and I think it mostly depends on what you are willing to do as far as your lifestyle goes. Lack of sleep, alcohol, and stress are all triggers and, you will have to decide if you are willing to sacrifice those things in lieu of taking medication. There are people on this site who take no medication but control their seizures through lifestyle changes. And, taking medication is still no guarantee so you would probably still have to curtail your lifestyle a bit too.

I wasn't diagnosed until my 50's and can't imagine how hard it must be for you at 19. Please come back and keep us updated.

 

[Nakamova]

Hi Jonathon, and welcome --

One thing to consider is that the more seizures you have, the more likely it is that your brain will get in the habit of seizing. So it's a good idea to find a way to prevent your seizures if at all possible. Medication is one possibility, and you can also try and eliminate behaviors that may trigger seizures.

It's a good idea to let your doctor or neurologist know what's going on, as well as friends and family members. While the decision is ultimately yours about treatment steps, you should keep them in the loop so that they can support you.

Best,
Nakamova

 

[RobinN]

Welcome Jonathan -

hypoglycemia has played a huge role in my daughters seizures. Since monitoring her diet, and making nutritional changes, we have seen a great improvement in her health.

Something you might consider. Especially if you are drinking a lot, which you mention a few times in your post.

 

[Ruthie]

I don't want to confuse you but the spell you describe most recently could be something other than seizure or epilepsy. Have you ever had a neurologist rule out orthostatic hypotension, neurocardiogenic syncope or anything along those lines?

There is overlap in symptoms between autonomic dysfunction, seizures and fainting and most Dr's know nothing (have not even heard) of the various dysautonomia's but they know about seizures so sometimes people get misdiagnosed. One first step would be to see if there is a neuro in your area who could do a Tilt table test.

Dehydration, alcohol, not eating right, lack of sleep are things that will make any medical condition worse but the fact that you laid down in the grass and got some relief really sounds like an orthostatic hypotension response (basically a drop in blood pressure while standing).

If you are interested, let me know what state/country you are in and I will tell you if there is a dysautonomia specialist in your area. One thing you could try in the interim that would not hurt but might help is to increase your fluid intake...especially an electrolyte drink and see if that makes a difference.

Good luck and do take care of yourself. Things will look up for you again.

 

[rjay]

thankyou for all your advise.

i think the next step i need to take is to book an appointment with my gp and explain what is happening; hopefully from there i can get another appointment with a neurologist talk it through and hopefully as Ruthie says get a tilt table test to rule out orthostatic hypotension.

i do believe that i haven't had any more episodes because i have been looking after myself uptil very recently - not really on purpose but being in a relationship gave me a more stable lifestyle.

either way i'll keep you guys posted and share any infomation i find out

cheers, J