are these signs of epilepsy?? please help!

[natashajade]

hello, my name is Natasha, i am 23 years old from UK.

its a bit of a long story and really don't know where to begin, but i hope someone can help.

it all started when i was 12 i was diagnosed with type 1 diabetes, came out of no where but was under control in no time, a few months or so after being diagnosed i began witnessing strange things happening.

the first time i had a 'seizure' i had been out with my friends one night. we stayed up until early hours of the morning, after about 3-4 hours of sleep someone knocked the door and i woke up to answer, as i was making my way to the door i had a weird sensation come over me and i literally just fell to the floor everything went dark in front of me and it was like flickering in my eyes for literally a few seconds, i got up and carried on like normal then i woke my friend and took her into another room to tell her what had happened and then it started again, but this time was worse it looked like someone had pushed me across the room, i just went flying backwards, as its happening i dont know whats going on and i cant see anything but it only lasts a few seconds. i went to the doctors regarding this but they just put it down to my diabetes.

it carried on from there, when i would wake up for school early i would be getting ready in front of the mirror and just fall over, or backwards. i wouldn't even know it was going to happen, it would catch me off guard.

after about a year i had a very bad episode, i was asleep in the middle of the day and then woke i stood at the top of my stairs and then out of nowhere again i just had a 'blackout' and fell top to bottom and was out for a few seconds, i was really confused when i came round and when i got up i was really jumpy, i walked out of the house and ended up sitting on the floor crying because i felt like i was going to fall down like the world was spinning around me. this happened a few times with the stairs and every time after getting up i would have the same sensation, feeling of being unbalanced and jerky hands and feet and twitching eyes.

when i turned 16 it just stopped, everything went back to normal i have no idea how it just did, it vanished for a good 2 years and then when i turned 18 some of the symptoms came back, like the jerking and twitches. but thats all that came back.

at age 20 i fell pregnant and that's when things really kicked off, i had my son and throughout my pregnancy i was okay but after, it got really bad, i was extremely sleep deprived, tired all the time, low iron ect..
just out of no where my heart would start racing, id have pins and needles sometimes, and my hands would jerk, it mainly happens when i am concentrating, so when i am putting things in order my hands would jerk to the side, or if i was to step over something my leg would flinch and give way, if i am writing my hand will quickly jerk across the page, also when i am reading, my tongue will jerk and my words will go into jumble and sound like im gagging or something its so hard to explain. i can not walk without my pushchair or a trolley at shopping, i feel very unbalanced, and like everything is spinning, when coming out of elevators i feel as if i am going to fall over and extremely unbalanced. sometimes i just blackout for a few seconds and fall over or look like i am being pushed, i am aware its happening but have no idea how, had no warning, it just happens and after i feel really confused. sometimes it feels as if my brain is jerking, its difficult to describe.
anyway i have had an MRI scan and it came back as normal and tones of blood tests all normal. i am due an EEG so hopefully will reveal something although i had one when i was 15 and it was normal.

so just to summarize, the symptoms i have are:

-jerking hands (either when concentrating or really tired)
-jerking feet
-feeling unbalanced
-dizziness
-twitching eyes
-flickering feeling in brain
-pins and needles (sometimes)
-rapid heartbeat
-over emotional
-blackouts (lasts seconds)
-falling down
- and very rarely full on seizure.

if anybody could give their input on weather these are any signs or if they have been through something similar i would be so grateful. i really want to get to the end of this. its really scary, im scared to drive in this condition and fed up with being looked at weirdly by doctors when trying to explain! sorry for the long post! and thanks in advance!

 

[Nakamova]

Hey natashajade, welcome to CWE!

Have you seen a neurologist, or better yet, an epileptologist? The symptoms you describe would be recognizable to an epilepsy specialist as very likely to be seizure-related. It sounds like you might be experiencing a few different types:
Myoclonic seizures (twitches and jerks)
Simple partial seizures (all sorts of unusual sensations including tingling, changes in heart rate, and inappropriate emotion).
You can read about those seizures types (and other kinds as well) here:
http://www.epilepsy.com/learn/types-seizures/myoclonic-seizures
http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
It's worth checking the links out in case you've been experiencing other symptoms as well.

Since your symptoms got worse after you got pregnant, it could also be that hormonal fluctuations (spikes in estrogen and drops in progesterone) are a contributing factor.

I hope you can get some relief soon. One thing that might help with the jerks and twitches is to make sure you're getting enough potassium and magnesium in your diet, and consider taking a magnesium supplement if you aren't already. Both those elements play an important role in brain health and in helping muscles to relax.

 

[Fedup]

natashajade

Nakamova makes some very good suggestions, you were saying about other seizures, what do you mean.

 

[Draven]

I'm going through some very similar things. I'm waiting to see a neurologist, but pretty much everything (but seizures) has been ruled out by my family doctor. It would likely be helpful to start logging your symptoms (one day I wrote down absolutely everything that happened for 5 hours straight - it was a bit of an eye opener for me) and see a specialist as soon as you can. xoxo

 

[Cint]

Hi Natashajade,

I too, have Type 1 Diabetes along with epilepsy. My seizures started over 30 years ago, first as SP, CP and went on to TC. Even tho my Diabetes came on as an adult, I still have to take insulin shots to control it. And I see an epileptologist and an endocrinologist at the same hospital, that way they can work together as a team.

Make sure your A1c levels are under 7. I'm sure you test your glucose regularly. Does it get below 70? Do you feel faint if it falls below 70? Sometimes my glucose level falls down to the 40's and I feel like I'm gonna pass out and I'm confused for a few minutes, my lips feel numb. Sometimes my vision is very blurred.

As Nakamova said, since your symptoms got worse after your pregnancy, the seizures could be due to hormonal fluctuations. After my son was born, my seizures increased and were harder to control because of the change in hormones, catamenial seizures.

For more info:

http://www.epilepsy.com/information/women/all-women/hormones-and-epilepsy

 

[natashajade]

hi everyone thank you all for your comments, im so happy to hear from you. wasn't expecting anyone to answer back

nakamova, i have seen a neurologist and they recommended a MRI scan which i had and came back clear, so they have ordered me to have an EEG, other than that the consultant wasn't concerned at all they just look at me like they have no idea what i am talking about.
i have read up a few symptoms of Myoclonic seizures and for a long time i thought this was exactly what i was having!
i didn't know about the magnesium and potassium so i will definitely give it a go!

FEDUP, the seizures that i have had have been very few but when i have had them they are very full on, i cant really remember much about them but what i can remember was biting down on my tongue and shaking tremendously, i was screaming for help in my head but not a word came out of my mouth, when i came round i was told that my eyes were rolling to the back of my head and that my whole body was convulsing. but the thing is that my sugar levels were low at that point so it could have been due to that.

DRAVEN, i am currently seeing a neurologist but nothing seems to be getting done they arent really worried, i will go back to my doctor and ask to be referred to an epileptologist which i have never heard of! lol.
good idea to write down your symptoms i think i will start to keep a log and show it to my gp as they may take me more seriously! i hope your appt with the neurologist goes well!!

CINT, I've had diabetes for 11 years now, diagnosed when i was 12, and the seizures and other symptoms started a few after, so weird how it all kind of happened at once! but yes when my sugars go low i get extremely hungry, shaky, sweaty, pale and confused. but my sugars are normally a bit higher than low. my hba1c is in the normal range at 58% this is a bit high but still within range which i do need to work on.
it sounds like it would be hard work having to deal with diabetes and epilepsy, but i suppose knowing and dealing with it is better than not knowing and suffering!

thank you all so much for your replies! x