Newbie saying hey ho

[dragonflysusie]

Hey guys, so where to start. I guess my first ëpisode" as i like to term them happened about 18 years ago. I was at a poker machine with my then husband and heard a loud windtunnel sound through my ears and felt what can only be described as an electrical charge at the base of my skull/back of neck. I then started seeing jagged electic lines ...like you get if you squish your eyes together too hard and open them quickly...or maybe that's just a me thing ....and then my vision went blurry and i was left feeling drained. That was the biggest one i have ever had. Since then, my episodes have been a lot more subtle....looking like i zone out or daydream and i have managed to laugh it off. Over the years i have had numerous tests, I have a family history of autoimmune diseases and neurological issues, mainly neurofibromatosis. I have EEG's, ECG's, heart monitors, halter heart monitors, blood tests...surprisingly ...no MRI and found nothing. One Dr went as far to tell me that it was just anxiety and that i wasn't that special for something more exotic.....i felt humiliated. Another told me that I had what was called "absentism"and that i would just need to learn to live with it and so I have been....until now. I find that now i am getting older, big 4. 0. next year.... that they are becoming more frequent in nature and really wear me out. I have been in a fog for the past week like one was coming...and bam....two big ones today that have left me feeling extremely weak, tired and sore joints and muscles. I have caught myself clencing my teeth alot too. I have recently tried to get on top of my health, eating healthier and exercising.......running in particular seems to bring on an episode really fierce, especially if my heart rate peaks up higher. I seem to be ok if i keep at a steady rate though.

I can feel my episodes coming on just briefly and have time to grab on to something or brace myself....the only way i can explain them is that i zone out. The lights are on but noone is home. I can hear everyone around me, albeit muffled, but i can't respond...the windtunnel noise is still present but not really loud...i get the electrical charge at the back of my neck and feel like i am going to pass out as my vision gets a little blurry. My children are starting to worry, and that upsets me. I need answers. I have a Dr's appointment tomorrow and have already seen her about a neurologists appointment....hopefully i won't just get fobbed off yet again.

A friend of mine told me today that her sister has petit mal seizures, and alot of her symptoms sound exactly like mine. Apparently her sister used to zone out on the tv all the time and not hear when people were speaking to her. That has always happened to me....i swear some people think i am rude because they can have a whole conversation next to me and i will be oblivious...same when i read and it has been that way since i was a child...i seem to only be able to focus on one things at a time and have bad memory recall. When i do realise they are speaking to me, i am disorientated...and not sure about the conversation, find it hard to pick up. Anyone else experience anything similar ?

So that's me in a nutshell....not sure if i have left anything out. Penny your thoughts people....Nice to have someone with common experiences to turn to .....Susan

 

[jemsister]

Hey, Susan, and welcome! I'm glad you are seeing a doctor, and I hope they will be able to get to the bottom of things very soon.

I have simple and complex partial seizures. Simple partial seizures can be somewhat like you described, where you get a weird feeling, sometimes you feel deja-vu or jamais vu, hear/see/smell things that aren't there, feel pain, things like that. My simple partials are usually painful, and everything sounds like it's coming out of a tin can. I also feel very dizzy and get that "pass out" feeling. Some people call them auras, like a warning sign, because they can develop into a different kind of seizure. But auras are also seizures themselves.

Here's a link about simple partial seizures: https://www.epilepsy.com/epilepsy/seizure_simplepartial

Have you ever lost consciousness during an episode? When my simple partial seizures develop into a complex partial seizure, that is when I lose consciousness. But I appear conscious to others.

 

[jemsister]

Just wanted to add that there are many different kinds of seizures. Here is some info about them. https://www.epilepsy.com/epilepsy/types_seizures

I hope your doctor can figure out what's going on! It may not be seizures, but it's certainly something. =/

 

[jyearta]

Hi and welcome to CWE.

I hope Your Dr. will be able to help you.

I can't say this is what you are having. I have absence seizures, I have temporal lobe E. of the right side.
my seiz. start out with déjà uv-everything seems, looks, sounds like it has happen before the exact same way. I am lucky, I know to get a safe place, I stare into space, I can hear what people are saying to me , I know where I'm at, but I can not respond.

I am on Dilantin and Clonazepam.

 

[dragonflysusie]

Gp seen

Thanks jemsister....links were informative. Went and saw my GP today, referral for Neurologist has been written. Have slept nearly all day and the foggy feeling is slowly starting to lift...feel a little brighter but sore joints and a massive headache now. My GP is convinced it's some form of partial seizure but as she assures me, not her field and the neurologist she is sending me to specialises in epilepsy. More blood tests to be had tomorrow and previous medical scans and tests are being forwarded to the neurologist so time is not wasted on tests that have already been performed. Lets hope i get some answers.

jyearta: you explained me to a 'T' ....i have noticed today whilst i am laying down resting that everynow and then my whole body twitches....asked my husband if it happens while i sleep and he said "yeah a bit"....makes me wonder wha't that's all about....lets just hope i am reading too much into it

Keep you posted...watch this space Susan

 

[scaredycat]

I can so relate to your story, dragonflysusie... I've had SO MANY tests and the only thing anyone has found is a few white matter lesions. One neuro thinks I have some sort of anxiety thing going on and another things it's migraines... so who knows. I have trouble describing what it is I am feeling when I feel funny, which has not helped anything.Anyway, maybe your neuro will prescribe a video eeg?? Might be more likely to catch something?? GOOD LUCK!

 

[jyearta]

My husband has not mentioned any twitches coming from me.

When my seizures where getting worse back in 2003-04 he said that when I was in a seizure my hands would more like a lobster clams.

KEEEEP. on these dr. for test, you need to get the meds. that is right for you.
If you are in fact having seizures your Bain can get in the habit of seizing.
Please understand that it is not my intention to scare you.

 

[jemsister]

Jyearta, my hubby says the same thing--that I always make "lobster claws" with my hands when I'm in a complex partial! I have never had any twitches with seizures either. Just the simple/complex partials, and the rare drop attacks.

 

[Nakamova]

Hi dragonflysusie, welcome to CWE!

The doc who said you had "absentism" was right in some ways -- it sound like you have experienced absence seizures among other symptoms. ("Absence seizure" is just the modern term for petit mal). But that same doc was very wrong in telling you to "live with it." I'm glad you're getting to see a specialist. The sooner you get your symptoms under control the better.

Best,
Nakamova

 

[dragonflysusie]

getting frustrated

Hey all, well still in that annoying foggy state on and off and still have that jaw clenching feeling too.....episodes keep happening as well as the stupid nerve twitching. I was hospitalised wednesday night and they were pretty bad....ecg showed nothing going on with my heart. but when the doctor tested my reflexes.....right sight felt like a whole jolt of electricity shot through me each time she hit my knee...whole body jerked. Was not a nice feeling.....as with hospitals....won't know anything until you see the neuro....definately have something nerve related going on with your body ......no der'....why didn't I think of that. GP has sent referral through...now just need to wait for an appointment....lets just hope i don't go nuts before then. Keep u updated.

jyearta....lobster hands, the only thing that i do similar is stretch my hands constantly not sure if that's the same thing.