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Fee

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Hi. I was diagnosed with epilepsy a couple of years ago but I don't seem to have the typical symptoms that I have been reading about. The last episode was diagnosed as Syncope and the more I looked into syncope, the less likely it seems that my episodes were actually epileptic seizures.

My back story (apologies if it is a little long-winded but I think the history behind this is important):

The first instance happened on Christmas morning. A couple of months beforehand, my grandmother died and my brother dragged the whole family through hell because he felt entitled to a lot more inheritance since our mother had passed away many years before. I couldn't sleep or eat for months due to the stress, but I was working 8-hour days as a painters labourer while juggling being a single mom, so I just kept pushing through (as you do as a single Mom.) It got to the point that on Christmas I had almost no energy to even stand up, I watched the kids open their presents and then told them that I had to go to bed - I crawled a short way but realised I would have worried my kids, so I pulled myself up to my feet and staggered off to bed. After a while, I needed the loo, but once I was done, I stood up and I got really dizzy - next thing I know, I was on the floor shivering like I'd been trapped in a freezer (this was summer, so I shouldn't have felt so cold, I thought. The eldest child called my ex (their Dad) and he was there within a couple of minutes. I was still shivering uncontrollably so he told the paramedics when they got there that I was fitting due to something he witnessed 15 years before (not a fit, but he thought so). OK.. next episode
8 months later, I had been working 10 hour days as a traffic controller for around 6 months, I was going through the bad habit of not eating due to being too tired and not really getting hungry, so I would forget to eat. Sleep was fairly non-existent too. At work, I got a sense on de-ja-vous (only after I realised it was because I was standing in the exact same spot as the day I started with the company). On the drive home I began to lose my vision - I call it the grey veil - and felt my feet and lower legs get hot and heavy. I thought it may be my blood pooling into my legs, so I tensed all my muscles and it seemed to work. I was stopping into the shop on my way home and the relief of being so close to the car park so I could rest made me relax... Then everything went black. I was vaguely aware of being shaken around but I just wanted the world to go away so I could sleep because I was so exhausted. I came awake in a bush across the road - luckily I had only rolled a few meters as I was almost stopped when it happened. The strange thing which scared me is that when people ask me questions such as do you know where you are, etc, I Do know where I am, but my mouth doesn't co-operate. The words get stuck on my tongue even though my mind knows exactly what is happening. Goodbye driver's licence and job.
Next episode was a couple of months later, not eating or sleeping due to the stress of losing my job and now my ability to buy a small house to live in (getting a rental is like winning lottery now). Decide I'd better have something substantial to eat so made myself and ate a potato bake (on a very empty stomach). stood up , got dizzy and fell to the floor. I've asked my kids about the events that they witnessed and they insisted there were no convulsions.
I had been on Keppra 250 but it was the most horrible experience, I felt tranquillized but at the same time my whole body was constantly tensed up. I could barely feed my kids toast for dinner, but, as a Mum, I persevered. I explained this to my neuro who dismissed anything I said and told me to take DOUBLE the dose!!! I tried, but it was impossible to function as a human. I told my GP and he said to stop the meds. I did - gladly. I now felt normal again.
The last episode was in September 2021. I had just got a new job in a factory working a very labour-intensive job sanding cupboards, the amount of sweat and energy needed, I still kept losing weight no matter how much I tried to eat ( got down to 43kg). one hot day, I was feeling really thirsty, I just couldn't quench it. I started getting dizzy and got the grey veil again. The next thing I know, my co-workers were standing around me and I wondered why I was on the ground. When the ambulance officers got there, they asked me the usual questions and the same thing about my mouth not wanting to work, even though I knew exactly where I was and what was going on. My inability to answer properly keeps coming up on my records as being confused and disorientated, but I wasn't. It was like having a page on the computer screen and trying to print it out but the printer gets jammed.

Anyway. I realized now that I have a problem with eating and push myself to eat a regular time. I still sometimes get sidetracked but I am much better at calorie intake and have not had any episodes since. My second neuro now has me on 50mg levicam which has much fewer side effects, but I feel like I have syncope and not epilepsy and I don't really want to take medication if it really isn't needed. I do still take the levicam because I'm not an expert and would rather be safe than sorry, but this has never felt like epilepsy but no one seems to think that the diagnosis might be wrong and is saying I'm in denial. I don't deny that I might have epilepsy, it's only because I like to understand things and what has happened to me doesn't seem to fit the usual stories for seizures.

Does anyone have similar issues?
 
Hi Fee,
Welcome to CWE! I will tell you that the 2 main things that trigger seizures are stress and lack of sleep. What you are describing
sounds possibly like you may be having complex partial seizures and the seizures could be happening do to lack of sleep or a sleep
disorder. If you haven't had a sleep study done I would advise you to get a sleep study along with an e.e.g. and e.k.g. all at the same
time. I had this done and my neuro found that I was having seizures in my sleep abuot 1-2 hrs. before I would wake up in the morning
and that I also have sleep apnea which can trigger seizures.

Often a person can get dizzy from a seizure and when you mentioned that your mouth wasn't working that sounds like me when I
have a complex partial seizure. I start out seeing colors flash back and forth in my eyes, then I get a nervous feeling in my stomach
after that I blank out and when I come out of the seizure I often find myself in a different room because I wander around during the
seizure and this is known to happen for some people who have complex partial seizures.

Do you ever feel confused after this possible seizure happens, have a headache, and feel tired? If you do then there's a good chance
you are having seizures.

In regards to not wanting to eat that could be the keppra. I was on it for about a month and the drug increased my seizures
along with giving me a hot temper and I had to go off the drug then I went on vimpat and I'm doing much better.

Try taking vitamin B12 1000 mcg. once a day that helps calm the nerves and stay away from nutra sweet because that has been
proven to trigger seizures for many people because it causes more electrical activity in the brain.

My best advice for you is for your family Dr. to refer you to see an Epileptologist at an Epilepsy Center and they will be able
to do a bunch of tests and find out what's going on. I wish you the best of luck and May God Bless You!

Sue
 
Thank you so much for the reply. :) I did forget to mention that I have quite a low bp. I've never had the colours in my eyes or the nervousness. The lack of appetite has been since I was a child, but the Keppra made it almost impossible to eat even when I forced myself. It actually made the food and sleep problem so much worse.
I know people who live with epileptics who describe what you are talking about, but I don't have any of those. I am never confused or unknowingly walk around afterwards or have a headache or tired, I am fully aware and awake afterwards, but I have had a history of a couple of mini-strokes, the only time convulsions were witnessed was when I fell at work, hitting my head really hard on the concrete floor. This was also the only time my muscles in my body felt really sore for a couple of days afterwards so I didn't question the seizure diagnosis (but the doctors at the hospital said it was Syncope.). I have heard about the b12 - since I have very heavy and long periods and have tried it but between all the meds they keep making me take (like blood thinners and iron and anti-seizure) and both my kids are on meds for various reasons (one has ADD/Aspergers the other has anxiety) It is too easy to forget yet another pill. I'll try to get back to taking them regularly.
My first Neuro was arrogant and dismissive, but then I found out he was a Huntington's disease specialist who has many negative reviews including sleeping during appointments, refusing to let a friend(who was a medical practitioner) of a patient into appointments and having also been sued before for unneeded treatments and medications. Thankfully I managed to get a second Neuro who specialises in epilepsy and is so much more attentive and knowledgeable.

I really appreciate your knowledge and experiences as I have almost no friends or family to speak to. Everything I do I have to do alone. Just feeling like someone has listened makes a big differece.

So thanks again, Sue.
All the best :)
 
Some people have diabetic or blood sugar related seizures, which are dangerous. These are usually when blood sugar dips too low and that causes the seizure.

Growing up, I didn't know what my auras were, but my mom could look at my face and see this glazed over glare and knew. As an adult, there was a period that my neurologist allowed me to try and come off of my medication and it was successful for 15 months. They were glorious months...until I got COVID and that triggered me so badly. When I went without the medication (was waiting to get back to the neurologist and those waits are awful - usually 3-6 months) after my month supply ran out I got from the ER.

I noticed auras more during this point where I was waiting for the neurologist appointment.

For me, the dizziness - that can be a major one. I feel like I start getting this double vision kind of that starts to grow a bit more persistent. I can blink my eyes, it'd be gone, but then perhaps an hour later, I can blink my eyes and I can't get rid of this double, unfocused vision. Then, the vertigo comes in. I feel like I'm on a carousel at hyper speed that won't stop - best way I can describe it. If I try to stand, I will fall.

I have had a seizure in high school where I had thrown up in my classroom, my teacher walked me down the stairs and then I had a seizure while waiting for my mom. I didn't know it until everyone was freaking out, telling me not to even get up. They took my temperature - lower than normal body temp.

Sometimes if I feel on the edge of a seizure, there are times I might feel like I am freezing.

Seizures can mess with the body's temperature regulation.

Sleep deprivation alone is a seizure trigger - even if you don't have a history of seizures or epilepsy. Anyone is capable of having a seizure if they are sleep deprived. Good sleep is an important part of controlling seizures. Unfortunately for night owls like me.

Some are able to tense their muscles certain ways and stop seizures - I think there's a few around this forum that have mentioned it. It sounds interesting, I've never done it, but if it helps this - there could be some seizure activity going on.

Slurred speech and not being able to put words together to speak is another issue that happens with seizures. I remember trying to talk to my family one time and they looked at me puzzled, kept saying my speech was slurred, and they couldn't understand me. I kept getting more and more angry with myself and had to stop talking all together, it was a nightmare.

Feelings of deja vu are a common seizure aura, same goes for euphoria or fear - generally out of nowhere.

Having a thirst you can't quench can simply be dehydration (but generally after a point with dehydration, the body stops feeling thirsty and more illness settles in), but extreme thirst can be a common issue in diabetics, too, as the body has excessive amounts of sugar and is trying to rid of it - causing you to feel more thirsty.

I wouldn't be surprised if you have seizures of some type (there are so many different types - it can be confusing even to me).

When syncope goes unexplained, seizures can be a culprit at times. Other times it could be things like POTS, a heart issue, a hormonal issue (like having too much/too little cortisol), or other blood pressure problems. Neurological issues are tricky and take a while to diagnose usually and can often look like other things - "Perhaps they were just having heat exhaustion."/"Something caused them to faint. They'll be all right."/"It must be your anxiety."/"Did someone slip you any drugs?"/"Have you taken any illegal substances?"

I think society has a cookie-cutter look on what epilepsy or seizures in general look like. They don't all look the same. Sometimes you wouldn't know someone was having a seizure because they seemed fully aware, were walking around, but if you talked to them - you might figure something wasn't quite right. In high school, I had issues where I would have a seizure and forget where my classes were, I didn't know the time, I couldn't hold a thought for the world, I didn't know my name, my pupils were awfully dilated, etc. Security was getting so frustrated they got the campus police officer and I couldn't walk a straight line, eyes were shaky when following a pen. My backpack got searched - respectfully, though, might I add. They went in the nurse's office in private and all, but my mom showed up and said, "It looks like she's having a seizure. These types of things happen when she has a seizure," but the school was so adamant that someone slipped me something so it was off to a fun visit at the ER. >_<

If you haven't been checked for diabetes, heart conditions, or hormone issues - perhaps talk to your primary doctor and/or neurologist about these possibilities. They might hear you out and have the appropriate blood tests and such done to check on things to be sure the cause isn't something else.

Now, keep in mind that I am NOT a doctor or medical professional. I can't diagnose any disease or anything so I can't give you actual medical advice.
 
That was really interesting, thanks.
Although, still I don't feel nearly everything you mentioned, just the freezing cold (the one instance of de ja vous was obvious - because I HAD been there before). I've long suspected that I have had a blood issue, whether it be bp or lack of something. Both my grandmother and mother passed away because of blood/heart problems, but no-one seems to think that any of that is relevant. All I get is ' here's some meds.. and more meds and other meds to counteract the side effects of those other meds.' I get frustrated that they seem to want to treat symptoms but not the cause - and all 4 of my episodes(in 2 years) seem to have an obvious common cause. Even when I asked for a blood glucose test by my gp, he basically rolled his eyes and gave me a referral for the blood test clinic instead of doing the pin prick test - this was in the morning before I had eaten anything. Then didn't tell me I had to fast for the blood clinic the next day. later I told him that I didn't fast before the test but he just said that it came back normal and there was no need to do another one properly(I've had appointments with him that lasted only 20 seconds, no kidding!).
After all that and knowing that nearly 1 in 5 people diagnosed with epilepsy doesn't actually have it, I naturally question the outcomes and more importantly, the treatment. Being a single Mum with challenging kids and no one to help, it has been a hard ride. I'm suppose I'm just frustrated that I don't seem to be listened to or taken seriously when I give them mine and my family's history, which I thought was important for diagnosis but seems not to be the case according to my doctors.
Sometimes I feel like giving up and living in a hole but I'm too stubborn for that and I refuse to let things beat me.

Thankyou for your story, although I still don't relate to most of the symptoms you describe, it is still information that I appreciate and will take into consideration.
Good luck with everything in your life :)

Fee
 
Oh, I see. I thought you related to a lot of common seizure symptoms since you also mentioned dizziness:

After a while, I needed the loo, but once I was done, I stood up and I got really dizzy - next thing I know, I was on the floor shivering like I'd been trapped in a freezer (this was summer, so I shouldn't have felt so cold, I thought.

stood up , got dizzy and fell to the floor.

Extreme exhaustion:

I was vaguely aware of being shaken around but I just wanted the world to go away so I could sleep because I was so exhausted.

Losing the ability to speak properly:

I Do know where I am, but my mouth doesn't co-operate. The words get stuck on my tongue even though my mind knows exactly what is happening.

You mentioned common triggers like lack of sleep:

Sleep was fairly non-existent too.

Long periods without eating anything:

8 months later, I had been working 10 hour days as a traffic controller for around 6 months, I was going through the bad habit of not eating due to being too tired and not really getting hungry, so I would forget to eat.

Not eating, sleeping, and stressing:

not eating or sleeping due to the stress of losing my job

Dehydration and dizziness:

one hot day, I was feeling really thirsty, I just couldn't quench it. I started getting dizzy

A lot of times EMT's or paramedics may write down "confusion" and "disorientation" in their notes with "inability to speak, slurred speech, etc." because it's often a neurological issue that causes that and if you can't speak, the impression is that you are confused or disoriented. What else are they supposed to document or think? It's hard when you're unable to speak, sadly and that's what it becomes.

Sometimes you just gotta keep switching doctors around until you find one that listens. If there's a history and you feel that you should be seeing a cardiologist to rule things out then keep asking around for referrals. It wouldn't take them many tests to either rule out or find something these days.

A lot of conventional medicine attacks the symptoms, but doesn't help the cause. I suppose with seizures a lot of times, the cause is unknown. I'm big into homeopathy and natural stuff and I'm pretty bummed that I haven't been able to ever get it under control with natural means. The triggers are what gets me like infections, dehydration, lack of sleep, my menstrual cycle, etc. there's too many triggers to effectively manage it all naturally, especially with small children.

However, I do believe still that even on a medication, it's important to still keep up the natural things for overall health, countering obnoxious side effects from medications when possible (like if it's tiredness from medication to get extra sleep when possible - I know not all side effects can be helped that way, though), and to reduce the seizure frequency to possibly avoid being put on even more medication.

Look and see if there are some naturopath's in your area that are any good. Most of them don't take insurance so you're going to probably need to save up anywhere from $100 - $350 for an initial visit...but the consecutive visits are usually cheaper. It's can be hard to find a great one, though...so try to find local recommendations.

Look up local blood labs in your town, city, and/or state. We have some labs in our state that have certain tests that you can pay for out of pocket. Some will be super pricey, but there are ones that are like $5 - $10 and that can be worth it, especially if your doctor is lacking on writing the referal to the lab for you. I know with the lab I like to use, I have an account on there and can get my labs before my doctor does and if I pay for it on my own, I can print it off and take it to my doctor or request it be sent to them. Ultimately a useful resource! I hope you have something like that near you. Even if you don't think there might be any useful tests on there, there could be some perhaps you've considered, but haven't been tested for.

Some areas also like community health departments may offer free blood glucose testing in an effort to catch diabetes early. See if your area has these resources if you feel you need to do it again.

Sometimes the doctor won't tell you to fast, unfortunately - my husband had this happen with his labs. I remember early on in getting seen for possible seizures that my mom was like, "She was supposed to fast for that? The doctor didn't tell us this..." kind of thing, but always look on the printed referal/blood work order - at the bottom in fine print it will often say to fast. These days, I've had enough of that nonsense that I always ask now just to be safe so I don't show up and then get told, "Nah, we can't do it." What a waste of time, right? This seems fairly common.

Definitely keep switching doctors until you find one or ask friends, family, or local people in your area on social media or something who is a good doctor in your area that will sit and listen to you and isn't a pill pusher and you'll usually get some people responding to you.

If I get a doctor that doesn't listen, doesn't take me seriously, etc. I don't hesitate to switch anymore. I need a doctor that actually cares. I remember moving to a new area and found a neurologist that took our insurance. I went into his office, he had a heavy Indian accent and I don't usually have issues understanding accents, but I could barely understand him. My husband was with me in the doctor's office and the neurologist looked him square in the eye and said, "Does she stare?" and my husband said, "Um...yeah? But...?" Didn't know what he was getting at. That neurologist automatically took me from Keppra 500mg twice per day to 750mg twice per day, no other questions asked...I was in a rush to leave and didn't come back. Like, seriously, "Does she stare?" What on earth?! Like?! My husband has had friends with seizures, but he didn't know what the neurologist was getting at with it because he didn't explain what type of stare. I hadn't had any seizure problems at all since my previous visit before we moved as well. Never felt bad not going to that neurologist again.

I can't remember if it's an HMO or PPO type plan, but one of those types allows you to skip the primary doctor for referals and go straight ot a specialist, but they're often more pricey for premiums/co-pays, unfortunately. It's so nice to be able to go straight to a specialist, though, especially when you have a feeling is wrong. Wish I could even afford it >_<

Anyway, I will say this:

Just because a person doesn't look like they're having a seizure doesn't mean they aren't having a seizure. Seizures don't always have convulsions. Some are cleverly hidden and I've heard some referred to as micro-seizures because they're so small that a person is unaware they've had one, but feel the fatigue after. Not all seizures are ever the same. Simply because someone has one thing happening to them during a complex partial doesn't mean it's going to be the same for someone else that experiences a complex partial. Many different seizures types, many different symptoms, and not everyone has the same symptoms even if they are diagnosed with the same types of seizures as someone else. It's a strange thing, but a common misconception.

It's not uncommon for those with seizures to have undiagnosed heart problems. For some people heart problems go hand in hand with seizures.

I do hope that if your neurologist has come to this conclusion that they've been able to do the appropriate EEG and possibly MRI scans to help confirm or deny suspicions they may have regarding your diagnosis.
 
Thankyou. Great info.

I'm in Australia, so while we get a rebate on GP visits, anything else is out of pocket and specialists are quite expensive and take 6 - 12 months just to get a first appointment(then they want to make another appointment in 5 months to discuss, then another.. just to talk about how things have been going without any real outcome). Also finding a different GP is really hard, we have a shortage and most won't take on new clients, not to mention they are very hard to get to as our city is built around private car use and I obviously am not allowed to drive (yet). Our public transport system here is abysmal. The only income I have is my small inheritance that was supposed to be for a house deposit, it is quickly running out and I'm worried about being able to pay rent. I really do want to see more specialists such as cardio etc, but I simply cannot afford to.

Since making sure I've been eating and sleeping, I haven't had any issues at all. no dizziness, no grey veil, nothing like when I was pushing my body past its breaking point. As far as I was aware, Epilepsy won't just disappear like that when you consciously look after yourself.

The only thing the first Neuro used in his diagnosis was one small spike in the EEG (about the same time as I suddenly remembered a bill I had forgotten to pay) and had no issue with the flashing light at all.
My new Neuro seems more understanding, but with 4 - 6 months between appointments, nothing gets sorted quickly, I'm just expected to survive for long periods while I wait. They assume that everyone has others to support them mentally and financially. I suppose I'm just frustrated that I have to jump through hoops for the smallest things and I'm running out of the necessary funds to chase up these medical issues.

I also find it odd that there seems to be little to no info on people who have been misdiagnosed (the statistic say it is around 1 in 5). Not that I truly believe that I have been, it would just be good to get their points of view to be able to compare, such as I've been doing with people that do have Epilepsy.
Yes, I'm one of those annoying information-hungry people. lol I just want to know instead of just being told maybe.

Anyhow, I really appreciate the effort you have put into your answers. And I like that you seek homeopathy, natural remedies tend to have far fewer side effects than man-made one-size-fits-all drugs. You clearly know quite a lot and I will add all that to the knowledge I am garnering.

Thanks again :)
 
Thankyou. Great info.

I'm in Australia, so while we get a rebate on GP visits, anything else is out of pocket and specialists are quite expensive and take 6 - 12 months just to get a first appointment(then they want to make another appointment in 5 months to discuss, then another.. just to talk about how things have been going without any real outcome). Also finding a different GP is really hard, we have a shortage and most won't take on new clients, not to mention they are very hard to get to as our city is built around private car use and I obviously am not allowed to drive (yet). Our public transport system here is abysmal. The only income I have is my small inheritance that was supposed to be for a house deposit, it is quickly running out and I'm worried about being able to pay rent. I really do want to see more specialists such as cardio etc, but I simply cannot afford to.

Since making sure I've been eating and sleeping, I haven't had any issues at all. no dizziness, no grey veil, nothing like when I was pushing my body past its breaking point. As far as I was aware, Epilepsy won't just disappear like that when you consciously look after yourself.

The only thing the first Neuro used in his diagnosis was one small spike in the EEG (about the same time as I suddenly remembered a bill I had forgotten to pay) and had no issue with the flashing light at all.
My new Neuro seems more understanding, but with 4 - 6 months between appointments, nothing gets sorted quickly, I'm just expected to survive for long periods while I wait. They assume that everyone has others to support them mentally and financially. I suppose I'm just frustrated that I have to jump through hoops for the smallest things and I'm running out of the necessary funds to chase up these medical issues.

I also find it odd that there seems to be little to no info on people who have been misdiagnosed (the statistic say it is around 1 in 5). Not that I truly believe that I have been, it would just be good to get their points of view to be able to compare, such as I've been doing with people that do have Epilepsy.
Yes, I'm one of those annoying information-hungry people. lol I just want to know instead of just being told maybe.

Anyhow, I really appreciate the effort you have put into your answers. And I like that you seek homeopathy, natural remedies tend to have far fewer side effects than man-made one-size-fits-all drugs. You clearly know quite a lot and I will add all that to the knowledge I am garnering.

Thanks again :)

Getting into see doctors isn't the easiest here, either. It feels like the good doctors have 4+ month long waits. Neurologists here have been like 6+ month waits for as long as I can remember.

Medical is not fun to afford for sure...it's difficult to get to medical appointments when you can't drive as it is. I'm not sure if you have this where you are, but I know here sometimes with some health insurances, you can schedule a ride to your appointment. I never felt comfortable with it, though, and had heard nightmares of people going to the big city with the transport and then their ride home never showing up...always scared me to death to think about something like that, but if it were local, it probably wouldn't be too bad.

I hope you are able to find something financially to help you out. It's never a fun situation...we're still trying to figure out how we're going to pay rent this month, too :(

I'm glad that you haven't had any issues at all. That's always peace of mind :)

I hope things keep getting better for you!
 
One thing you mentioned that I do have is being unable to communicate. Knowing answers but can't say anything and even in my mind the words are just 'there' but it is like the meaning isn't.
 
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