Confused & worried about seizures

[confused]

Hi
I'm sorry for jumping straight in here but i'm not sure where else to ask. I had my first grand mal/tonic clonic seizure out of the blue a couple of years ago and had another a couple of weeks later. In between and since I've had countless of what I now understand to be simple partial seizures - at least one per day. I had probably every test there is back then but they found nothing - mri clean, eeg, ecg, bloods etc etc. All that was odd was the actual seizures and some weakness in one side.
I'm female in my twenties, healthy except for this and was not given any more checks or treatment but still have simple partials sometimes which often feel like they're building up to a grand mal.
I'm confused as to how they can have found nothing at all with all these seizures. The neurologist i saw suggested they were psychological but that really doesn't fit at all.
I'm also worried about having another grand mal seizure - is this likely?
Does anyone have a similar experience or any advice for me?
Thank you.

 

[Silat]

I have primarily simple partials, they will sometimes spread into complex partials, and those sometimes (rarely) spread into grand-mal seizures.

The problem with tests is, they're not 100% accurate. EEG's, which are the main diagnostic test they use, are not nearly 100% accurate, and have difficulties picking up seizures which occur deep in the brain.

I went 6 years without a proper diagnosis, so I understand how frustrating it can be... Sometimes people get diagnosed right off the bat, others take years to get a diagnosis, it really varies on each situation. :?

It's possible that you may have another Tonic Clonic (grand mal) seizure in the future, if your seizures spread in the way mine and others spread.

My advice is to talk to your neurologist about treatment to get them under control first, then worry about a diagnosis. The fear of the unknown is scary, but having uncontrolled seizures is worse, especially in the long run... If you're not happy with your neurologist or feel they're incorrect, you can always get a second opinion from another neurologist.

Also, I'd strongly suggest keeping a journal of your seizures. Having a journal can be extremely helpful in getting a diagnosis and for keeping track of their frequency. You can also, if you're detailed, use it to establish potential triggers for your seizures.

If you have the time, reading around the forum can be very helpful as well. Try these threads:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

Last, but certainly not least.... Welcome to CWE!!

 

[julie wishes]

All the best advice I've received came from all the knowledgeable CWE members here. So welcome and feel free to look around at some off the older posts. There is tons of great info here. Best advice going is journal. Keep track of all seizure activity and any unusual diet or life changes. Increased stress, lack of sleep, flashing lights, some computer / TV screens, some diet choices, etc can cause an increase in seizure activity. So become as educated as possible about seizures and anything involving seizures, because it helps you deal with this problem much better.

I don't want to give the wrong advice, so I will let the others answer some of your more specific questions. Im glad you found CWE. I hope you find it very helpful and informative.

 

[confused]

Thank you thank you thank you for your responses!
This does all affect me a lot more than i'm ever willing to say. The tonic clonics were both in a similar environment while doing the same activity, high impact excercise, something i've been afraid to do since. i don;t remember anything from them - i don;t know if that's normal or weird - i remember the last thing i remember doing beforehand and then coming to and having no idea why i was in an ambulance/on the floor with fifty people staring at me.
i didn't realise until now that the "auras" i was experiencing are a form of seizure - is that right?? i also didn't realise half of what i was experiencing was also seizure. i mentioned everything to my dr and the neuro but he didn't believe me i think.
i don't have insurance to see a dr now and i don't see why things should show up now that didn't before. i just want to get rid of the fear and have that part of my life back.

 

[Silat]

High impact exercise can be a major trigger for some, and it sounds like that's your case. It could also have been a decrease in your electrolytes from sweating which caused you to have a seizure. Low levels of vitamins/minerals can be a major trigger for some, and for others it's the underlying cause of their seizures.

Auras are simple-partials which then spread to cause a fully convulsive seizure.

i mentioned everything to my dr and the neurologist but he didn't believe me i think.

That seems to be a common occurance... especially lately. It might be that I'm just noticing it more, but it seems like that's happening to a lot of people. :?

As far as fear goes, it can be paralyzing at times. How it is dealt with is different for each person, but I think the key lies in your view of them. Perspective is everything.

 

[Nakamova]

Hi confused --

As mentioned above, it's quite possible that you are having seizures that aren't being picked up on an EEG. Your neurologist may not have been experienced enough to make an epilepsy diagnosis based on your symptoms alone.

Since you can't see a doctor at this time, you should focus on being proactive with your general health, and finding ways to keep your stress levels low. There's good info here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ In addition, I recommend that you keep a journal tracking your symptoms. It may be handy if and when you get see a neurologist in the future, and it can also help you to identify any triggers or patterns. Fatigue is the #1 trigger, but they can also be related to food sensitivities (caffeine, aspartame, MSG, gluten, etc.), metabolic issues (low blood sugar, electrolyte imbalance), hormone fluctuations (estrogen/progesterone, thyroid), illness/infection/injury, as well as environmental and emotional stressors.

Some people have had success in treating their seizures using a dietary approach such as the Modified Atkins Diet. More info here: http://www.atkinsforseizures.com/

It's normal to feel anxious about the possibility of having another tonic-clonic, but you shouldn't let that fear paralyze and prevent you from enjoying life. It may help with your anziety (and with your simple partials) if you can take a few minutes several times a day to meditate. It needn't be anything more than closing your eyes and focusing on your breathing for 5 minutes or so. You'll find that having built-in breaks can help lower your stress levels and help you cope.

Best,
Nakamova

 

[confused]

Thank you for your excellent advice, i will read those links more thoroughly when i have a moment.
Weirdly i'm really glad that you say that the cause is quite common, Silat - up until now I thought I must be the only one. In the EEG they did all the flashing lights business but that did nothing for me. When I told the neurologist what I had been doing before both tonic clonics, he insisted I must have been drinking (I hadn't drunk any alcohol at all on either occasion) or I was stressed (I was actually very relaxed and having a good time). I also was not dehydrated.

I guess what I'm scared or worried about is that before I lived with friends who, unfortunately, had all seen my seizures and was around friends who had all the time. Now I don't and I'm afraid of having a seizure around people who I can't bring to tell about any of it. Previously i've both times been unconscious until the paramedics arrive so had no say in whether they were called. i'm worried about it particularly due to lack of insurance which i also can't bring myself to tell anyone about. Sorry. I feel gross for saying this but I haven't properly excercised for two years because I'm scared of getting my heart rate up and having another seizure. Maybe it's time to try?
I'll look into the proactive health thing though.

This is seriously adorable>> :banana:

 

[Nakamova]

When I told the neurologist what I had been doing before both tonic clonics, he insisted I must have been drinking (I hadn't drunk any alcohol at all on either occasion) or I was stressed (I was actually very relaxed and having a good time). I also was not dehydrated.

Sounds like a bad neurologist -- definitely find another when you get insurance.

I hope you can get over the fear of having a seizure in public, either around strangers, or around friends who don't know your history. You might consider carrying a card in your wallet with your emergency contact info. It can also explains that you don't want to go to the ER in the event of a seizure. If someone calls the paramedics, I don't think it matters whether or not you have insurance, you don't get charged. But if you ride in the ambulance and go to the ER, then the bills kick in.

But truly, don't be embarrassed about not having health insurance, or about having epilepsy -- you're hardly alone in either of those boats. I've had quite a few tonic-clonic seizures, and it just doesn't faze me at this point. My friends have stuck by me, I haven't been stigmatized, life goes on...

If you do start exercising, take it slow and pay attention to how you feel. Even if you are feeling great, don't push yourself, and make sure to hydrate and eat properly.

 

[qtowngirl]

Welcome Confused, and know you definately came to the right place. I think pretty much everyone feels that once they've poked around a bit; there is so much support here and would be hard to find someone who isn't walking or hasn't walked in your shoes.
Everyone's right though, try not to worry about having another T.C. As Nak said, fatigue is the number one cause, and stress is second. Keeping yourself in a worried state could actually bring one on, whether it's just a partial or it goes all the way. Sounds like you haven't got an epilepsy diagnosis, but it's good to treat the situation as if you have until you find a good neuro (as Silat said it's very common - I'm on my second one and many people have had to go through four or five until they're satisfied).
Don't over-stress, sleep sleep sleep, avoid processed foods, take proper vitamins, and if you can (it's hard for some, I'll admit me too), try not to drink too much. As fatigue and stress are the top two triggers, alcohol is the third. Overall doctors have a tendency to give them to you in a different order, but that's the top three nonetheless.
Yep, looks like exercise is likely your trigger at this point, but that doesn't mean you have to avoid it altogether. Just get back into it nice and slow and make sure not to overdo it. Nak's advice re: a bit of meditation every day is great as well.
And yep, simple partials are seizures. Some people hate em, some love em, just depends on the experience it gives you (pleasurable hallucinations or intense fear or...).
I am also female and had my first grand mal in my 20's, it's life-changing for sure. But, and please take this to heart, from both me and Nak, you do go on. It's a great way to learn who your true friends are, they stick by you at every turn or they turn away. And then you know who's worth sticking with, the rest can go to hell.
Come here whenever you want to know something, vent about something, laugh, cry, or whatever. As far as I'm concerned it's the best site ever for us in this crappy boat. Take care and hope to see you around

 

[jyearta]

I exercise 10 min. at a time. One day I might exercise 3 diff. times of the day. Something as simple as sitting a kitchen chair, then stand up and repeat.

How this could be to much for you, I don't know.

 

[confused]

Thank you for your advice.. onder:
I have been doing some exercise since and am getting palpitations and auras when I do. I'm not in bad shape - I don't understand. I heard exercise helped against seizures and obviously it's good for you... but it's not that nice feeling you're going to collapse doing light exercise, know what I mean?