Newbie & Petrified.

[aggy84]

Hi all.

I'm 27 from the Uk and have just been told I'm having complex partial seizures. I wasn't sure as I'm still conscious? I thought for the last 6 years I was having panic attacks. Apparently not!
I'm absolutely petrified, as I was merely told by the neurologist not to drive and they will refer me for an emergency appointment with the MRI people. I'm absolutely scared silly, I feel more a lone than i did before I knew (I've been struggling for years not understanding what was wrong with me - doctors gave me GAD and panic attack print outs and brushed me off).
This whole thing gets me so upset, because I don't know why they happen, they confuse me so much and scare me silly. I'm left feeling low afterwards, confused and drained.
Will I ever stop them from happening? I'm so upset that I may not be able to drive... I only passed my test two years ago and so it's totally thrown me.
Any advice would be extremely appreciated. I'm so scared I cant even begin, and not only that I feel so alone.

Kind Regards
xx

 

[Nakamova]

Hi aggy84, welcome to CWE!

Hugs to you -- I know the early stages of a seizure disorder diagnosis can be especially scary, confusing, frustrating, etc.

With complex seizures there's impaired consciousness/awareness, rather than full loss of consciousness. It's a bit like daydreaming or sleepwalking -- you might say or do things that you can't remember. Usually they last less than 2 minutes, but because of the impaired ability to respond, they can be risky for driving. Some people get warning auras beforehand. Is that the case for you? (Auras can be odd sensations -- physical, physiological, psychological -- like an unusual smell, feelings of nausea or fear, or a sense of deja vu).

The MRI is just to rule out any structural causes for your symptoms. (Mine didn't show anything useful, though my EEG did). Then it's most likely that you'll discuss medication options with your neurologist. Meds are the default treatment for most seizure disorders. It can also help if you can get a sense of what triggers your symptoms. keeping a seizure diary can help -- you note down when your symptoms occur, and then look for patterns. They might be occurring at a particular time of day/month, or in response to things like fatigue, low blood sugar, food sensitivities/nutritional issues, hormones, flashing lights, stress, etc.

You're not alone. CWE members have "been there" and can offer tons of advice and support. Please feel free to post any questions and explore the forums here.

Best,
Nakamova

 

[aggy84]

Thank you so much for getting back to me.

Yeah can feel when I'm having one come on. But the lines are blurry because I do think about them, which I thought encouraged me to have them?

I get doom feeling sweep over me, de javu, i swallow a lot, and if i try to talk i make no sense... its sort of like im frozen in a daze. When I had my first, I was convinced I needed to try and remember whatever it was that I kept thinking about during these episodes... so got myself totally stressed from them. Every time I'd have one I'd think "Write it down next time!" or "tell someone youre having one" but i physically cant. My boyfriend was with me last time and called him Dad (so smooth- good job he loves me!) Lasts 2 mins max then im fine. They scare me so much. I do beat myself up about them because I dont understand why Im having them and dont really remember much just the situation... I used to be so happy until these came on 6 years ago. I suffer from migraines and also have PCOS. I was a late starter with periods so my hormone levels arent fantastic, doctors put me on the pill to sort that out but it made me gain wait and made my attacks worse...so came off it.

I've been back and forth to the doctor and they have all brushed it off as just anxiety/panic attacks. So I assumed I was just having those and nothing else. I have been sent to hypnotherapists, and counsellors who all thought I was depressed.... instead I was so confused and alone. Its only been since my current GP said for me to go to the neurologist for 'peace of mind' that anyone has taken me seriously. I know the lines of panic/anxiety attacks and seizures are very fine. He tried to put me on medication there and then. He did some reflex tests? and then looked into my eyes with a torch? Did he establish something from those tests to confirm I was experiencing complex partial seizures?

Will I always have these scary seizures? Can I ever make them stop? I've suffered for so long on my own... through some of my meant to be best years! xx

 

[Nakamova]

Thinking about seizures doesn't necessarily encourage them, unless thinking about them causes stress, and stress is a particular trigger for you. There are a few folks who can sometimes "derail" a seizure if they feel one coming on (but I don't think it's easy to do).

Complex partials are tricky to diagnosis, and unfortunately it can take a while to get there. Many folks, like you, are misdiagnosed with and treated for psychiatric disorders instead. But what you describe sounds more like seizures to me. I don't think anything your neurologist did necessarily pointed to complex seizures -- the eye and reflex exams were to rule out other neurological issues. Unless you had a seizure in front of him, it was most likely your description of symptoms and your history that rang a bell. Migraines and PCOS also have a high correlation with seizure disorders.

Once you are diagnosed, it can just be a matter of finding the right med and dosage to control them. Sometimes the very first med you try is the winner, sometimes it can take a bit of trial and error. Meds can have side effects so there can also be a process of finding the med with the fewest side effects and best seizure control. Everyone's situation is different, but there's a good chance your seizures will be partially or fully controlled.

Some CWE members have found that special diets such as the Modified Atkins Diet have helped with seizure control. Certain food allergies or sensitivities (to things like gluten, or corn) or additives like MSG/Aspartame can trigger some folks, so it can help to take a close look at what you are eating or drinking to see if there are clues there. Another alternative approach is Neurofeedback. You can read more about these things here: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments and here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

This is also a great place to start:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[jyearta]

Hi Aggy84, Welcome to CWE.

This forum has helped me so much. Everyone is so kind to share their experiences be it with their seizure or medication or Dr.---it a big help.

I have simple partials serizures and I do have the deja vu that Nakamova mentioned in his post.

It has always taken 2 diff. medic. to get my seizures under control.

I praying you will get the dr. you are needing. Just know that you are not alone.

 

[aggy84]

Thank u for all your help.

I feel its almost worse developing epilepsy at an older age... you seem to be more aware of things and because its something you cant fix, or explain it makes u feel like you're going nuts.

I dont drink caffiene, and hardly drink. I exercise but ive had seizures whilst running long races... is that normal?

I also tend to get my seizures in the morning when i first wake up. If i have one I worry about having another because they scare me so much. Could my worry encourage another?

 

[Cint]

Hi aggy,

I've experienced seizures of different types for over 30 years now. They first started when I was just 22 years of age. And for me, they started around that time of month and usually when I would first wake in the morning, so for some, they can change over the years. I've had seizures while walking, working out, in my sleep, in the shower, wherever,whenever. And stress and worry can lower the seizure threshold.

Hang in there. Take a deep breath and relax.

 

[LJ-Bain]

Seizure come dressed in many different outfits and they can be difficult to diagnose.
I'm so glad that you are getting an MRI and that they finally trying to figure things out instead just brushing them off.
The no driving thing is a shock to the system...especially because you have been dealing with your "episodes" for years. And it's like, what? Now you want to take away my drivers and not before?
I hope that they do stop from happening. If they are seizures you may be put on medication and they may decrease to the point of not happening. Here's hoping!
It is scary.
Stress can make them occur more frequently. My seizures often happen right upon waking as well. I'm glad you're so fit! It is possible to have a seizure while running when its a simple focal seizure, with a quick bounceback. It sounds like you take great care of yourself and that is still going to be a part of your life that will help!
I hope you get the answers you need soon.

 

[Soniag]

hi aggy84, i also suffer from complex partial seizures while i'm still conscious. i had to give up my driving licence shortly after passing my test, so i know how your feeling. i've had many mri scans and an eeg so if you want to know anything about them then just ask. i'm taking medication and my seizures are becoming more stable now but am still worried about having more seizures, so you should know your not alone there!

 

[epileric]

I was born with complex partial seizures (as well as other types). I'd always thought I was completely conscious during them until I had one in my mid 40's while walking on the sidewalk coming towards a bus-stop when I blinked and the bus stop was a few feet behind me.

It was easy to forget since it's easy to stay in denial about how the seizures effected me but when I had one a year few years after that and came out if it in the middle of an intersection it sort of sunk in.

 

[aggy84]

I feel like crying... for years the NHS have said I was just having panic attacks... I feel like i've suffered through what are meant to be the best years of my life. I can't believe I'm meeting people who have experienced what I have!
The seizures scare me so much and leave me feeling terribly drained and low afterwards. Partly I guess because I didn't understand or hardly remember the exact details. I remember them happening but none of the details... and just the sheer fear and doom they create.
I know I'm a tough cookie... as well i've got this far along with not knowing exactly what was happening... but it has really got me down. I stress loads when I first wake up as thats when i usually have them, and if i forget about them they come out of know where. So I tend to be a bit edgy. Do you think this will change once I'm on meds?
Hi Cint! Have u managed yours well over the years? I get dejavu sweep over me, but dont remember details afterwards, horrendous taste in my mouth, I often get headachey afterwards and i'm left feeling very weak.
Hi Sonia... yes please! I was told my MRI would be asap... but this is the NHS so goodness know how long I will need to wait. Any info would be fabulous please.
I've cut out caffiene now, I do have decaf sometimes... is that okay still? I hardly drink. I eat as fresh as possible. I run, swim and do aerobics. I do have a naturally high heart rate and wasn't sure that if when I was doing my half marathon and had a seizure half way around it was due to that? Or dehydration? Its happened at two of my half marathons now... which obviously creates fear for me doing another one. I felt so weak afterwards.

Thank you so much for welcoming me. If I could i'd hug you all right now. I cant tell you how on my own i've been with all of this. xx

 

[epileric]

The seizures scare me so much and leave me feeling terribly drained and low afterwards. Partly I guess because I didn't understand or hardly remember the exact details. I remember them happening but none of the details... and just the sheer fear and doom they create.

I don't know if this is any comfort but I've had them all my life, know what they are & understand them pretty well yet I'm still extremely drained-physically & mentally as well as confused after my seizures. starting a few years back I've started to remember things that happened during the seizure but usually not for at least a week afterwards.

I've cut out caffiene now, I do have decaf sometimes... is that okay still? I hardly drink. I eat as fresh as possible. I run, swim and do aerobics. I do have a naturally high heart rate and wasn't sure that if when I was doing my half marathon and had a seizure half way around it was due to that? Or dehydration? Its happened at two of my half marathons now... which obviously creates fear for me doing another one. I felt so weak afterwards.

One thing that might trigger a seizure is hyperventilating. I remember in high-school I was a bit humiliated because my seizures always happened while running the track so my parents insisted I give a not to the teacher saying I didn't have to do the running if I didn't want.

A few years back I worked out in the gym 3 then 4 times a week. At first I felt more likely to have small seizures while working out but as I kept up my routine they not only stopped when working out but dropped in severity & frequency the rest of the time. If I were you I'd keep running but be aware of when you're pushing your boundaries too far. I'm not saying not to challenge yourself but watch & see if it correlates when you have your seizures.

Stress is a common trigger for epilepsy be it emotional or physical so be aware of it. When working out I found I also dealt with stress much better.

 

[aggy84]

Thank you! Yeah you're so right with the running. It was at about 9 miles I'd have a seizure. So maybe I should stick to 10k and build up. I love being active I pride myself on trying to keep fit. I've had a few obsticles over the past few years one major hiccup was I tore my ACL in a ski accident and had two major knee operations. I couldnt exercise so put on a lot of weight which was awful... keeping active has made me lose weight and feel good (apart from random seizures). I'd hate to not be able to.
Yeah I work in events management so my life is fast pased and stressy... I'm a bit buggered there I've started doing yoga but you're very right I need to learn what my triggers are and how to deal with them. I think me just getting the answers ive been after for years will help. If I am diagnosed with epilepsy after my MRI scan I'm going to complain about the lack of help and support xx

 

[epileric]

Glad to be of service aggy84.

Do be aware though that an MRI just shows any visible abnormalities in the brain (sort of like an X-ray) and many people still have seizures despite no visible cause like I did. I was 39 years old before they finally found a lesion on my brain.

I think an EEG that measures your brain waves would be more likely to Define whether you have epilepsy or not & even then it can also come up negative when you do have seizures.


If you can't run can you use any cardio machines at an acceptable level without doing harm? I cringed when I read that you'd torn your ACL.

As for the bad service, I know that's common with epilepsy since it's never an emergency unless you're having a convulsion that won't stop. Also the first time you get to see a neurologist is the longest, after that it's as needed (at least in Canada).

 

[Cint]

Do you think this will change once I'm on meds?
Hi Cint! Have u managed yours well over the years? I get dejavu sweep over me, but dont remember details afterwards, horrendous taste in my mouth, I often get headachey afterwards and i'm left feeling very weak.

Thank you so much for welcoming me. If I could i'd hug you all right now. I cant tell you how on my own i've been with all of this. xx

{{{HUGS}}} to you. For the majority of people, meds DO control seizures, so hopefully once your dr. gets you on the right medication, all this deju vu and other stuff will be under control. Unfortunately for me, I am in that 20-25% that has refractory epilepsy, have tried many medications, brain surgery and the VNS, to no avail. I still have some seizures once in a while, but not as bad as they once were. And I still have migraines.

 

[jyearta]

I cannot begin to know how someone must feel when diagnose later in life. But trying to find something good about that, is that you have NOT been on medic. all these years.

This sounded better --in my head--but when I put it in written it doesn't sound to good. I do hope you know what I'm tryig to say.

 

[aggy84]

I tend to have mine first thing in the morning/when I'm half asleep... do u all have certain times?
I had one this morning but could that purely be panic/worry about having one?
This is all so bizzare I cant even begin.

Thank you everyone for making me feel so welcome and less insaine than I did! xx

 

[jyearta]

I've notice that when I start waking up from a nap, I have a LITTLE feeling that I could have a seizure.
A seizure does not come on, just that feeling.

 

[Nakamova]

I tend to have mine first thing in the morning/when I'm half asleep.

That's a very common time to have seizures (when the brain isn't quite asleep or quite awake). At those moments, the brain is producing a certain frequency of brainwave that's conducive to seizures.

 

[aggy84]

Thanks for all the feedback.

I was just on the phone to a friend and whilst she was talking the dejavu came over me, along with utter fear. She continued to talk and asked me questions... I couldn't talk. I couldn't even think of words. I was so scared. She said when I started talking again was I okay, she said she noticed something wasnt right. I'd had one of those funny things (aka seizures) but I dont remember it. Only the feeling attached. I have not a clue what my friend said on the phone....
Is this dementia?! or a seizure or what is it? xx