Introduction and questions?

[juanne]

Hi All,

What a great and informative site. I have just registered today.

I am a 45 year old female, who has had 3- 4 undiagnosed faints/seizures over past 19 years? Last possible seizure was 8 years ago. Recent episode 3 weeks ago when I was hospitalised for 5 days. Had to be sedated an hour after my son found me by the staff at A & E, as i was not coming out of it (whatever it was) I was screaming and moving arms and legs. I have no recollection of what happened and lost memory for a couple of days afterwards. Had ct scan, Lumbar puncture and chest xray which were all normal. Have been referred to neurologist for further tests, eeg. MRI and toxicology screening. Although, I have had all these tests years ago and nothing abnormal was detected.

This last one, whatever it was, was certainly the worst incident I have had and consequently my driving licence has had to be surrendered until medical investigations completed, which has affected my job as I need my car to fulfil my role. Still, I do understand why as would hate that to happen whilst I was at the wheel of a car. Would hate to harm anyone else.

What I am questioning is whether you can go so long between seizures if it is epilepsy? As I said, I have been fine for 8 years really, apart from one faint which happened when I had severe menstrual cramps (that was 3 years ago) I defintely think that was just a faint though. I think the episode 8 years ago may have been similar to a seizure though, as I bit my tongue and was very confused and tired after it. A neighbour called the paramedics when she found me lying on he lawn! I wasn't hospitalised that time though!

Anyway, sorry I am rambling. WHat I wanted to know was whether I will get diagnosed with epilepsy if my episodes are so far apart?

I have to wait 13 weeks to see the neurologist, the waiting lists in England are horrendous.

Thanks for this wonderful site.


Juanne

 

[Chaz1]

so sorry, this must be so overwhelming for you…

Did you have major life events happening when you had these 3/4 potential seizures?

Do you or have you ever noticed any strange sensations that you could not explain but that maybe where/are so brief you just brush it off?

It’s impossible for anyone to say whether or not you will be diagnosed with epilepsy until you have had thorough testing.

The EEG will either record seizure activity or it may not (can be so deep in brain that it’s hard to detect) , if results do show seizure activity likely the diagnose could be epilepsy. MRI will show if there is anything showing on your brain that could be the cause..but yes it is possible that a Tonic Clonic seizure happen years apart, but normally there would be some other form of seizure activity in between.

warm welcome to CWE juanne.

 

[Fedup]

juanne

You are very welcome to C.W.E. As Chas1 said there is no definate way of knowing until all the tests are preformed but yes it is posibable for intervils like this to happen. The MRI will show if there is anything wrong or happened with your brain the EEG is to detect electrical patterns/brain waves but there is no certainty it will show up anything as the seizure can start in such a deep section of the brain it may not pick it up. They still have to be done though and until then you will not know if its epilepsy or not, sorry. Best of luck.

 

[juanne]

Thanks for reply

Hi Chas

THank you for your reply.

I had been under some stress prior to the incidents. Just 4 days prior to this last big one I had spent the night in A & E with my son, as he had been hit and knocked unconcious whilst on a night out, so I was understandably very worried and had no sleep that night. (he is thankfully ok by the way). I had also been extremely busy at work and felt that there were not enough hours in the day, which was probably raising my stress levels.

I remember very little from the morning when it happened. I do remember getting up early as my husband was planning on an early start and I had said I would do the same ,as I had a lot of work to get through. I remember I had an upset stomach and I also had cramp in my legs ( don't know if this is related?) I remember dancing up and down in the bedroom trying to get rid of the cramp! :lol:

The next thing I remember is about two days later in hospital. I have absolutely no recollection of the seizure itself. Very odd. MY son just heard me screaming in the bathroom and said I was just rolling around moving my arms and legs. He said I had vomited.

It is frightening, wondering if it will happen again. My mum said that I was obviously stressed, leading up to it and like I said, had had no sleep 4 days before and I have read that lack of sleep can be a trigger. However, I had slept the following three nights and in general, how do you eliminate stress completely? I hope I am not going to start keeling over at every stressful event!! :lol: I appreciate it is about knowing your triggers though and looking after yourself. I am definitely trying not to stress at the moment.

The surrendering of my licence has been a blow and I was due to start a new job in three weeks which I can't do ,as it involves driving, but, again I am trying not to get too upset as it is all beyond my control. I am lucky as my family have been very supportive.

Juanne xx

 

[juanne]

Thanks for reply Fedup,

I will be glad when I have had the tests. I have had MRI date through, just waiting for the others, but, as I said, the waiting lists are quite long here at the moment.

Juanne xx

 

[Fedup]

juanne

The waiting lists are long here in Ireland as well, stress does you no good either. There is very little recall after a seizure except coming out of it and at times its better that way and it is scary but in truth what can you do.

 

[Nakamova]

Hi juanne, welcome to CWE!

If there's one thing I've learned about epilepsy, it's that it's unpredictable. So what you've experienced -- even 8 years apart -- could well be epileptic seizures. (Epilepsy is just the technical term applied when someone has had more than one seizure.)

The next thing I remember is about two days later in hospital. I have absolutely no recollection of the seizure itself. Very odd. MY son just heard me screaming in the bathroom and said I was just rolling around moving my arms and legs. He said I had vomited.

This is a classic description of a grand mal epileptic seizure. The "screaming" is typical -- it's actually a very sharp intake of breath as the body sends oxygen to the brain to protect it as it goes into "overdrive". Often the extremities turn blue at the same time. The moving of the arms and legs is the convulsive phase of the seizures. It's normal to have zero memory of the seizure itself, and it's common to have memory issues afterwards as well.

I hope the upcoming tests and neurology appointment will help make things clearer one way or another, especially since your ability to drive is on the line. A positive EEG can help rule an epilepsy diagnosis in, but a negative EEG can't rule it out. Often, for diagnostic purposes, the tests are just part of the bigger picture. A complete list of your symptom history is very important. Some of the episodes in your history do sound like epileptic seizures, and it's also possible, as Chaz suggests, that there may have been other symptoms that you've dismissed because they didn't seem relevant. There are kinds of seizures that don't involve full loss of consciousness/awareness. Things like "zoning out", memory loss, migraine-like episodes, unusual sensations, unexplained feeling of anxiety/nausea, tingling or twitching muscles -- these can also be seizures.

I hope you haven't had anything like the above going on, but if you have, make a note and add it to the list of things to mention to the doc. And in the meantime do what you can to be proactive about your overall health. Fatigue is the #1 trigger, but many other things can play a role too. You mentioned having very bad cramps when you fainted a few years ago. For some women, estrogen surges are also a seizure trigger, so make a note if you feel odd at any points during your cycle. You might also consider taking a magnesium supplement. Magnesium plays a big role in relieving muscle tension throughout the body -- including menstrual cramps -- and is important for brain health as well.

I hope you feel free to explore the site. And keep asking questions -- being informed can make a whole lot of others things easier to cope with.

Best,
Nakamova

 

[juanne]

Hi Nakamova

Many thanks for your reply.

The more I read, the more I am beginning to accept that this was, as you say a grand mal.

It really helps to talk with people who you are knowledgeable and understand. I think my family are understandably very scared and when I raise the possibility of epilepsy they dismiss it and say, 'oh no, it won't happen again and although it sounds negative on my part, I can't help feeling that it may well do and so I need to be informed about how to manage and if I can, prevent it.

Thank you for the tip about magnesium.

I will spend some time reading the site, there appears to be a wealth of information and lots of support.

Juanne x

 

[JaneC]

Hi Juanne, don't think I can add anything useful but just wanted to say hello. My daughter went several years without a seizure even after her epilepsy diagnosis.

Losing your licence must be so hard. It's one of the thing Rosie brought up last night after she had a tonic-clonic yesterday. Other teenagers get their provisional and driving lessons when they turn 17. Rosie just gets another delay in when she can even contemplate applying.

Sorry, heading off topic. You're right, this site is brilliant and I hope you get answers about what's going on very soon x

 

[juanne]

thanks for reply

hi JaneC

Just wanted to thank you for your reply.

That must be really difficult for your daughter, being unable to get on with her driving. I hope it isn't always so. Does she take medication to control her seizures?

Juanne Xx

 

[JaneC]

Hi Juanne, my daughter has been taking Lamotrigine for about nine/10 months. She had two tonic-clonics six months apart in 2008 and then nothing till last spring when she started experiencing simple partials just ahead of her exams (possible stress connection?). She was diagnosed via EEG after her first TC.

The more recent episodes seemed to continue off and on for a few months (with the odd TC thrown in) so the decision was made last summer to start meds, something we basically put off as long as we could due to the side effects and the fact her seizures were infrequent.

Now it seems we are at a point when the meds are a necessity as she still has some seizure activity despite them, probably because her dose is quite small.

It's so cr@p having to wait so long to see a neurologist, waiting times in Scotland are bad too, even just to see the epilepsy nurse. Hope you stay well until your appointment comes round and that, when it does, you get some answers as to what is going on x