Possible undiagnosed epileptic. Please help.

[Savoury]

I've been losing consciousness about once a year, every year, since I was 5. I am now 20. When I was a child, the matter was never investigated as a result from a combination of busy and careless parents, and a family doctor who was convinced that I was faking everything that was ever potentially wrong with me.
I always know right before I'm about to faint - everything I see turns fuzzy and red, I get overheated, dizzy and extremely nauseous. The most recent time it happened was at my mother's salon - a couple of months ago. I knew I was going to faint (and have lost consciousness so many times I know how to manage it, or at least try to), I had a quick glass of water, and tried to walk over to a chair to sit in it, but apparently blacked out before I got there. I saw nothing, but someone was talking to me (can't remember what he was saying) and I completely forgot that I was at my mother's salon, or what I was doing. I just assumed I was asleep. I woke up a couple of minutes later feeling perfectly fine (except for where I'd hurt myself falling down) and urged an ambulance not to be called, but they already had. The paramedics checked my blood glucose and blood pressure, and everything was completely normal. A customer suggested epilepsy, and after some research, everything began falling into place and finally making sense, but I'm still unsure whether I'm making too much of this or not. A real reason for my fainting spells was never found, and always excused by our family doctor as "just growing up", or "spontaneous low blood pressure". The last time this was ever discussed with him was when I was 7 and had lost consciousness for a good 10-20 minutes in Italy on a holiday, where the emergency doctor there was moments away from pronouncing me dead, as my BPM had reduced to below 20.

Some months before I fainted most recently, at the start of this year, I began hearing voices in my head just as I was going to sleep; meaningless chatter between two or more people that I could never remember the next day (it was always grammatically-correct sentences with irrelevant nouns and verbs used, thus gibberish). I was conscious for it every time and could think clearly, but I was more in a waking almost-sleep. I have had auditory illusions whilst totally awake for a long time now, but never to this extent. Then the dreams started. I started having extremely vivid dreams where I would collapse onto the ground and start shaking vigorously.
In the same waking-sleep state as mentioned before, I would begin going through sleep-paralysis. I would be totally conscious, and know fully that I was going through sleep paralysis, but still could not move. Often during this paralysis I would feel extreme pressure of my teeth (the same feeling you have when you get your braces tightened, except so much worse), so much that it felt like my teeth were going to explode out of my gums. These episodes have been much more frequent since. Also for a few years now I have been feeling like there's scribbling in my head (I can't explain it any other way). I feel like there's someone scratching at my brain with a pen. It doesn't hurt, but it makes me feel extremely uneasy and anxious, like I'm on the verge of a panic attack, and when it gets really bad I just sit and stare and wait for it to pass because I don't know what else to do with myself to make it go away.

Now I get sleep paralysis about once a week, and just last night I had another sleep paralysis and seizure-dream, and felt so relieved both during and after.

I know I should see a doctor about this, but my only option is the same family doctor. I recently tried another doctor, who did nothing about it, and was convinced it wasn't epilepsy because I don't shake when I lose consciousness (which I know a lot of people with epilepsy don't shake at all). I want to be totally sure I have symptoms of epilepsy before I go to our family GP instead of prove him right that I am convincing myself I have something when I don't.

I don't know if these are symptoms of epilepsy, but I don't know where else to go, or what else to do. Researching the topic has proven both frustrating and frightening, and I figured those with real-life experience of this may be able to help me out. If you can, please, please tell me what this might be, whether you feel the same, or anything at all. I feel so desperate and sad and pathetic about this, because the sleep paralysis and sleep seizures are gradually becoming more frequent, and I'm worried I might lose consciousness again at a time that isn't as conventional or safe as my mother's place of business.

 

[NeuroNotes]

Hi Savoury, so glad you joined us. With regard to your sleep paralysis, have you had an increase in stress lately, worry?

You mentioned that your family doctor was your only option? I can understand why researching this can become frustrating, due to the fact that there could be a number of causes with similar symptoms. However, I wouldn't rule out a seizure disorder. I think you may be on the right track, or at least you can begin with a process off elimination. I would definitely insist that your GP recommend a specialist. If these are seizures, they need to be curtailed as soon as possible.

Edited to add: I would also recommend that you start keeping a seizure diary, when possible. This may prove beneficial in the long run, and give your doctors some documented history of your symptoms and the times they occur.

 

[Savoury]

Thanks for the warm welcome, Neuronotes.
Yes I have had an increase in stress; I began university this year, and I commit myself to a lot of study. The day I lost consciousness most recently at my mum's was the day after a Biology exam and a few days before a three hour Chemistry exam, so I was under a lot of stress and pressure. I understand it may just be stress-related, but I don't know how it would explain my fainting once a year, or my other symptoms. When my mother becomes less busy in a couple of weeks I'll ask her to find a specialist on this, but in the meantime I can't do much except research and worry. I don't know what others go through consciously when they have their seizures, or if they are conscious at all during, which is what I was hoping to find out here.

 

[Nakamova]

Hi Savoury, welcome to CWE!

I hope you can get some answers soon, especially because your symptoms seem to be changing and increasing in frequency. I know this can't be easy for you, but I think you should insist on getting a referral to a neurologist. As you've found, many GPs don't know enough about different kinds of seizure disorders to recognize the symptoms and take them seriously. Some of the symptoms you describe sound like Simple or Complex Partials, but the fainting and the low pulse could also be related to cardiac issues (which can present as neurological symptoms). I hope you don't have another fainting episode, any time soon, but if you do, consider allowing the EMTs to take you to the hospital -- you might get to see a specialist there, or a referral to see one.

Do you keep a journal of your symptoms? Have you been able to note any possible triggers (like fatigue or stress)?

Best,
Nakamova

 

[Savoury]

Yeah this is all a bit shocking. I honestly never considered it might Epilepsy or something similar until that customer suggested it. Since that one time when I was 7, my pulse has generally been fine, and my blood pressure was recently checked as well and it was perfectly normal (even though I'd just had a cigarette). You seem to be right about the doctors, I really thought they would know more about something so commonly known, but it seems the opposite.
I don't have a journal of my symptoms, but I remember almost all times I have fainted, and most of them have been for no reason at all. Once in 2009 I was at a friend's house just chatting and perfectly happy and normal and collapsed out of nowhere. There have been a few occasions where I have lost consciousness due to immediate panic, or extreme heat, but mostly for no known reason or trigger at all, or at least none I was able to note.

I've just done a quick research on both simple and complex partials, and I most relate to both Sensory and Psychic seizures. I often go through brief periods where I have immense difficulty understanding speech or written language, even though I'm able to read and understand all the words. I get both deja vu and vertigo on a daily basis, and have felt like my bed is spinning rapidly whilst in it (I remember telling my doctor that when I was 5. He laughed). Does this mean I'm seizuring.. daily?

 

[Nakamova]

It could well mean that you are seizuring daily. The deja vu and some of the other symptoms suggest that they might be originating in the temporal lobe.

 

[Savoury]

Even though right now I'm next to tears from all this, thank you so much for this information. I'll call my mother tomorrow and try to set a day within the next week to see a specialist. Everything I've been going through - the deja vu, out of body experiences, even the day dreaming - I thought it was all normal things that nobody really spoke about, so I never said anything either.

 

[Nakamova]

Let us know how things go!

 

[Savoury]

Will do. xx

 

[NeuroNotes]

You're most welcome. =)

Hmmm, talk about deja vu. I remember (hard to believe, lol) sharing about my childhood experiences to several doctors beginning as early as age 4. My parents filled in some of the memory gaps later. The doctors didn't laugh, but they also didn't take me seriously, and brushed it off as night terrors that would pass in time. My dad was in the Air Force during all of my childhood, so I only saw military doctors who were not specialists, and generally inexperienced (residencies).

After reading your last post, I would definitely seek a neurologist asap. This is not to cause you alarm in any way. It will be beneficial for you to try not to add to your already stressful environment. Btw, congrats on starting university. :woot:

Here are some relaxation techniques that may be beneficial in helping you with sleep paralysis, and possibly other symptoms you've been experiencing. Disregard the top section 'continuing education'. It includes a certification program from Johns Hopkins University, but the techniques are the same therapeutic techniques used by professionals.

Relaxation Therapy

>Here are some documented experiences that children have reported with symptoms of epilepsy, particularly TLE. Todd Murphy is a behavioral neuroscientist and has done extensive research in this area. He also experienced childhood TLE.

 

[Savoury]

Ah I know how you feel about doctors simply brushing off symptoms so eagerly. I don't get deja vu as often as vertigo. Vertigo I get about 4-5 times per week when I'm about to go to sleep, and that usually turns into an out of body experience, as the physical feeling I get from them are much the same. When I was a child I definitely had a lot of out of body experiences, but I never learned to control them like the girl in the article you linked me. I just remember feeling like I was out of my body, and seeing myself in my bed and the bed was spinning really rapidly, which I felt as well.

I have tried a wide variety of the relaxation methods before, as I've also had on-again, off-again bouts of insomnia (also from when I was around 5), and have used those methods to try to get to sleep, but unfortunately they have never worked for me either in relaxation or sleeping.
Thanks for the regards on getting into University by the way. It means a lot to me that I'm doing it now

Also, I called my mother today and we'll be seeing our GP this Friday for a referral to a specialist, so I'll definitely post updates as soon as I know anything.

 

[NeuroNotes]

That is fantastic news, Savoury. Yay!!

 

[Savoury]

I'm going to the neurology ward at a hospital next Tuesday morning for an EEG. So I really want tothank everybody for their support so far, I wouldn't have tried to sort this issue out so soon if it weren't for you that have replied here. Also, I've been talking to my mother about this, she said that I've actually been fainting since I was about 1. She said every birthday (whether mine or someone else's), every mother's day and father's day, every Easter and every Christmas I used to faint. Multiple tests were done like gastroscopies and colonoscopies, everything, and nothing was found. An EEG was never done though, and despite the frequency of my collapses, and epilepsy was never suggested. Thoughts?

 

[Foxy]

Hey nice to meet you,

Just remember with the EEG, an abnormal EEG means you have epilepsy but a normal EEG doesn't mean you don't have epilepsy.

My first EEG I had was normal and the second EEG I had was a sleep deprived EEG and that was the one that showed as abnormal

The neurologist said that for me improper sleep was a trigger for my epilepsy

Hope this helps

 

[Savoury]

Ah thanks for this ! I'll ask the neurologist on Tuesday about the sleep deprived EEG if the normal one doesn't show anything. I'm usually pretty sleep deprived because of insomnia so it may be a better indication.

 

[Savoury]

After an EEG, I got my results today (a week and a half later), and apparently everything is perfectly normal. Now I'm trying to get a hold of a neurologist at a hospital, but nobody's answering the phone at any secretary desks.. just my luck.
Can anyone in the Melbourne area in Australia suggest a good neurologist?

 

[skeeter1271]

the next step is to do the sleep deprive eeg. keep pushing and advocating for yourself. none of what you are going through is "normal"

there are answers and you are on the right path.

 

[Savoury]

Thanks, I'm going to get a referral to an actual neurologist because I don't trust my GP at all with my results. I didn't even get to see them and I only heard my results as second hand information. He's the type to lie, because he was so doubtful that I have epilepsy at all. I'll hopefully talk to a neurologist within the week and ask for advice on a sleep deprived EEG.

 

[Nakamova]

Definitely be persistent in getting to talk to a neurologist, and/or asking questions.

 

[Savoury]

Okay so an update worth mentioning !

Last Saturday I went with my mother to see a Neurologist. We talked with him about my entire history of collapses. She told him something she never told me: When I collapsed when I was 7 (mentioned in first post of thread), I shook and made a "roaring" noise (she didn't know how else to describe it). The Neuro said it was a seizure, without a doubt. I told him all of my symptoms, and he said it does sound like epilepsy, but we need to do more tests to find out whether it's that or something else, or a different type of epilepsy. He suggested the idea that my brain during some partial seizures instantly drops blood pressure levels (something neurocardial) which results in sudden collapses. He was really lovely and really understanding of my situation and feelings toward it all.

I'm having a sleep deprived EEG today and eventually a "tilt-table" test as well. I'll post results of the EEG as soon as I get them