New here and suspected epilepsy

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Nice!Good luck with it all :-) What is The Uni like there? I am possibly going to do a postgrad and that was one uni that had a course I may do.

Ah that's good that your bloods were clear and the neuro appt is soon! I waited 3 months for mine. I felt really drained for a good few weeks and even went for a blood test to check if I was anaemic or anything as I felt so abnormally tired. I've learned from this site that being tired is perfectly normal.

In regards to the eeg I had a look at a youtube video that showed what happens during the procedure, so that may be worth a look just so you know what you will experience. It's not too bad at all!

:-)
 
The uni is good! I actually had a meeting with my personal tutor about all this medical stuff today and they're very supportive and understanding. In fact, he's been great the whole year with a few different things. I can't say I love Bristol or being here, I've had a few bad experiences here, namely a car crash the second week I was here and moving from living with a bi*** in private rented, to halls accommodation (no head trauma in the accident before anyone asks, just whiplash). But throughout all that the uni has been so kind to me and helpful. And I really like the course too.

Thanks, I'll look at some youtube videos.
 
Gosh! You have been through some crap :(!

It's really great that your tutor has been really supportive, so that's a positive i guess :)

Let us know how your appt goes- good luck! :)
 
Well, today was my meeting at the neurology place, and it went okay.

I'm being sent for a MRI and EEG within the next 6 weeks, and that was all really. We talked a lot, but actually very little about the possible seizure. He thinks I may have parasomnia (I sleep talk-proper sitting up and really animated, and am generally a restless sleeper etc) and it turns out I have a very severe vitamin d deficiency. I was also convinced to finally do a pregnancy test just to rule it out 100%. I was already 99.9% sure I wasn't and the test confirmed I'm not. (woohoo).
 
Welcome Albie. I agree with Brandi that it sounds like complex partial seizures. I am new to all this too. It really can be hard to get your head around. I always thought epilepsy was only tonic clonic seizures or petit mal until I was diagnosed myself. I have complex partial. Strange smells, foggy head, panic attacks and mini headspins. Don't be too surprised if an eeg doesn't show anything. Sometimes it doesn't. Good luck. It sounds as thought you are entitled to be a part of this forum just as much as anyone else.
 
I had my MRI last weds, it was horrible. So noisy and scary. :(
No results yet and no EEG yet. I think I had my second seizure on the 22nd march tho, lasted about 30 seconds I think (also not witnessed). I felt fine before, no warnings and after I just felt disorientated and confused, no memory of what happened or anything I did.

If I haven't gotten a date for the EEG by Weds I'm going to call the neurology place and chase them up on it, see if they have any news on the MRI and let them know about the second seizure. Also will hopefully have another doctor's appointment this week and let them know.
 
Hi guys, just wanted to keep you in the loop as I really appreciate all of the support.

I got a strange letter from my dr a few days ago, which she had received from the neurologist and forwarded to me. It basically went over everything we had discussed, with some added medical notes. It noted that he thought it was probably a fainting episode as it was unwitnessed and only occurred once (when I saw him, it's been twice now) but that he wanted me to have an MRI and EEG. I have, of course, already had the MRI now and am due to have the EEG on the 30th of April. So, I called the neurologist's receptionist (he was off all last week, but she took a msg for him) to let him know about the second possible seizure and also visited my GP to inform her, as I hadn't done so yet. My GP was very supportive again and is also writing me a letter so I can leave my uni accommodation early and go home (uni already agreed I can write my dissertation from there).

So that is all for now.
 
Hey!!, please dont ever feel stupid, in we are all here together as one, if you dont ask you never know, had my first in december, still yet too be 100% diagnosed, its a long hard road, but we will sure help you. Seizures are scary very scary, so please come in join in, and dont be scared!! good luck for your neuro appointment! :)
 
Update:

Neurologist called on Thurs, he finally got my message about second seizure. MRI came back clean. He wants to see me after EEG (3rd) and then wants to schedule a sleep-deprived MRI and talk about meds. It's now four weeks since my second seizure, the first two were two weeks apart.
 
Sounds like he's doing all the right things.
 
Hey,

I'm new to this site and wasn't sure how to make a new thread but I thought I'd ask something here because this thread seems relevant.

I'm getting an EEG in a few months as my doctor suspects I have epilepsy, but right now I guess I just need some answers/to see if anyone experiences something similar.
If I get really stressed with something (usually emotionally) I go into these weird states for a while. For example, after a stressful phone call a while ago I sat on the couch afterwards as I felt very lightheaded. I started staring and wasn't able to shake myself out of it. I couldn't move my body and couldn't feel my friend touching me. I felt like I wasn't really in my body, like I was floating above, and I couldn't understand what anyone was saying to me. I started to feel very panicked, but had a lot of trouble expressing it. I started to come to and I just burst into tears and was terrified. I felt so exhausted and nauseated for a while after. This happened again last night but for longer, and it was a bit different. I felt really disconnected from my body again and everything just looked really weird. Like I couldn't focus on anything and things would just go out of my vision. Then I heard this voice call out my name, in a long and deep voice. A minute or so after that I was very scared, and started crying in fear, and still couldn't move my body. When I felt more in control I got up and walked around, feeling very exhausted and vomited, then my body was aching and began to shake for about half an hour.

I'm just very confused and I'm not sure what to do/think. I just really want answers and to fix whatever is happening.
 
Hi hayley156,welcome! You can make a new thread introducing yourself in "The Foyer" forum (see http://www.coping-with-epilepsy.com/index.php?p=start), but it's not absolutely necessary.

What you describe could be symptoms of simple partial and complex partial seizures. Those can feature dizziness, out of body sensations, visual distortions, cognitive issues, aural hallucinations, nausea and fear.

I hope you can get some answers soon. Any chance you can see a neurologist sooner rather than later? In the meantime, it can be helpful if you make a note of every time the symptoms occur. Also write down anything you can remember from your past health history -- when the symptoms started, if they've changed in any way, if you've had any other health issues (recent or from your past), etc.

Keeping a detailed health diary can help in identifying patterns or triggers. It looks like you've identified one trigger -- stress -- and there may be others. The #1 trigger is fatigue, but other things can play a role: dietary imbalances, food sensitivities, low blood sugar, dehydration, hormone fluctuations, illness/infection, flashing or fluorescent lights, etc.

Since you know stress is a trigger, do what you can to minimize it in your life. It can help to be proactive -- don't wait for stress to arrive. Take 5 minutes a few times each day just to relax and focus on your breathing (it can help to breath from the diaphragm, with normal inhales and longer exhales).

best,
Nakamova
 
Sounds like a complex partial as Brandi says. I did pretty much the same thing two days ago at the airport toilets (of all places). Line up at the handbasins and I decided to go into 'la la' land for what must have been about a minute. Funny thing is not ONE person asked if I was ok. They just used the handbasins around me and left me to it. Probably thought I was on drugs. Maybe I should wear a teeshirt saying 'I've got records to prove that my brain isn't working properly, what's your excuse (ha)'
 
No Sandie.... "Hide your spoons, I'm comin over to visit!" hahaha! I can laugh at you because this weekend I'm going back to the thrift store to buy forks :banana:
 
My teaspoon supply is about 1/2 of what it used to be. It would be interesting if anyone on this forum has a thing for knives (ha ha).
 
Hahahaha! What we could do is buy dinnerware sets in bulk and go in on them 3-ways and really save that way. See, I'm such a smart shopper! :clap:
I wonder what we do with them?? I've searched high and low, to no avail. I must throw them away when I'm in a zone or in one of my middle of the night trances. lol Maybe my brain thinks they are responsible for the size of my booty! heehee!
 
I throw mine in the garbage. My husband has seen me do it. I don't know I'm doing it but I have learnt to check the garbage before I take it out of the kitchen. I think MY brain thinks I drink too much coffee...one of my downfalls, I am afraid. I like your thinking on the dinnerware. Perhaps cutlery sets for epileptics with extra spoons, forks, or knives depending on your preference. You realize we are both totally mad, Brandi. I love it. Very refreshing. Take care my friend. Hope all is well with you.
 
Insist on a 24hr EEG. Twice I've had 20min ones come back clear. As a result I drove my car into a tree and second time fitted in shower. Good luck xx
 
Just had a letter today from my neurologist confirming that they suspect complex partial seizures but it remains ambiguous because they were unwitnessed. He hopes the EEG will shed more light, and if not I'll have the sleep-deprived EEG.

Stressful as the EEG is on Friday morning but my appointment with the neruologist is not until 4th June and by that time I will have moved back to Ireland from England where I'm currently studying.
 
You must log in or register to reply here.
Back
Top Bottom