New here and terrified

[Claire7]

Hi,

I have been reading this site for a while and thought I would post my story as I feel totally lost and scared.
I had my first seizure episode in 2008. i was almost 30 years old and 19 weeks pregnant with my 3rd child. I woke up and found myself lying on my front and felt uncomfortable with the pressure on my bump. I got up and went downstairs, sat on the sofa and that was the last thing I remembered until the paramedics arrived. My husband witnessed the incident and said I had a fit. my blood pressure was really low, I didn't have a headache after but I had bit my tongue slightly. ( i was also eating a biscuit at the time!)
I saw a neurologist 3 months later who said it sounded like convulsive syncope as I recovered very quickly and the fact that my blood pressure was low and the blood flow through the vagus nerve had appeared restricted at the time. (possibly due to me lying on my bump.

When I had my son a few weeks after this appointment, I ended up having an emergency c-section due to a massive placenta abruption. I lost 3 litres of blood and had pre-eclampsia. Luckily my son and I got through this ok!

Fast forward almost four years to July 2012. I had seizure (TC) probably about an hour or so after falling asleep. Again this was witnessed by my husband. Again I recovered quite quickly, did not have a headache or tiredness after the event although it was early hours of the morning. I had a very slight bite to the tongue. Taken to A&E by paramedics but kind of ignored once they realised I had a similar episode 4 years previously. They took some blood and gave me fluids as I had a very fast heartrate and then sent me home.
I saw the same neurologist about a month later who basically confirmed that it was a seizure due to my husbands description and told me not to drive for 6 months and keep my fingers crossed it doesn't happen again! I am having an eeg in a few weeks and supposed to have an MRI but not had appt through yet although neurologist expects these to be normal.

Prior to this seizure I had a stomach upset for the 5 days leading up to it and hadn't really been eating or drinking properly. I was really off my food. I had also started a new contraceptive pill that was giving me awful side effects and had just started a very heavy period the day before the seizure. I was very stressed due to family issues and had also started a new 2nd job that very same night.

Found out that my blood results taken in the hospital showed a slightly high white blood cell count and a low red cell count. No one told me this, I had to ask the GP.

I just feel so lost and confused. No one seems to be looking for a reason why this happened and I am just petrified what the future holds.

Any thoughts or advice would be very much appreciated. Sorry that my post is so long!

Thanks!

 

[huskymom]

Hi Claire7!

Welcome to the CWE site. I am glad that you finally joined in. I can't really help you with your issue other than to say stick with it! It can be frustrating and very hard sometimes to get a doc to follow through. Make sure you stay on them and get your tests done. You need the piece of mind if nothing else. I know that some birth control medication can cause seizures, but I don't know if that is the fact here. I hope you are able to get some results. Hope to see more of you here

 

[Fedup]

Do not worry or try I should say, some of the ladys on here will be able to help you better, sometimes the eeg and mri can come back normal, lost and confused is ok, it happenes to all of us. Stress can be a trigger so try not to get stressed - easer said than done, advice, well you would need to start keeping a diary so you can keep a record of everything that happens and the fact your husband is there to see it helps, write done what he sees. The blood results maybe a lack of a vitmain or if you work indoors a lack of natural light but its best to ask your doctor for advice.

 

[Claire7]

Thanks for your replies! It's hard to keep a diary as nothing to note has happened during the past 4 years until that episode 6 weeks ago. Im a real worrier and stress about everything on a daily basis but as far a seizure activity is concerned I have had nothing apart from these two.
I just feel so low at the moment as I just presumed that episode 4 years ago when I was pregnant was a one off and to go 4 years with nothing and then this has been a huge shock. Even the neurologist said that if that one 4 years ago was a seizure it would have been unusual to go 4 years with no problem at all. He said I may be one of these people that may have random seizures when the condition is right. Do you think this is possible?

 

[jyearta]

HI and welcome to CWE.

I have had seizure as a child, they were not bad and didn't happen that often until I was a teenage (Hormons) and when I got married and went on birth control bills...that is when they really got bad.

There are so many triggers, (not that you have all of them)
hormons, stress, lost of sleep, sickness, and more.

Are you any medications?

 

[Claire7]

Hi! No not on any medications. Neuro didn't think it was necessary. I am wondering if they are hormone related. First time I was pregnant and this time I had been on a new pill for 3 months. Had just stopped It for the 7 day break and was bleeding heavily.
I am wondering about medication though. I am absolutely terrified of it happening again. I have 3 children and this affects them too as I can no longer take/pick them up from school or to clubs etc. I have to rely on so many other people.
At the moment I know the driving restriction is only temporary but if it happens again then the restriction would be longer. Part of me feels like I want to consider medication to prevent further episodes for the sake I my children.

Thanks for reading my rants! It feels good to get things off my chest to people that understand!

 

[Cint]

They absolutely could be hormonal related. I started having seizures when I was menstruating and noticed they would come as part of my PMS. That was way back in the 70's and the medical community didn't want to address it, but now they recognize that hormones do play a role. The pill could do it, too.

Here is a website on this subject:
http://professionals.epilepsy.com/page/hormones.html

 

[Claire7]

Thanks for the info! The only thing I don't understand is the huge gap between my episodes. During the past 4 years I obviously had my baby, breast fed him for 10 months and have been on and off different contraceptive pills during that time and have been fine. What I don't understand is why now? Is it possible to have infrequent seizures with no medication! I'm just so confused!

 

[JaneC]

Hi Claire, my daughter was diagnosed just over four years ago after a couple of tonic-clinics in one day. She had another six months later, then absolutely nothing for three and a half years, so yes, there can be a long gap. We thought it might be down to puberty the first time. Now she has probs when she doesnt get enough sleep. She has recently started meds but that felt like a bit like leaping off a cliff. I'd have a good read up on them before diving in, personally x

 

[Nakamova]

Hi Claire --

Sometimes it can be a combination of triggers that bring on a seizure. So it may have been a hormonal imbalance along with low-blood sugar or electrolyte imbalance from your week of indigestion. You may also have had a low-grade infection that lowered your seizure threshold.

When I had my initial seizures, I was stressed and eating less-than-normal, but it wasn't remarkably different from anything I'd done before. Most likely a "perfect storm" of factors just pushed me over the edge.

 

[qtowngirl]

Nak's right on about the 'perfect storm.' A lot of issues going on at one time can be the ideal time for a seizure to brew. Sounds like you're under a lot of stress (a top seizure trigger, whether it's a full-blown convulsion or a simple partial), and in conjunction with your body still getting used to the pill, as well as not eating the way your body is used to for a week, it's a definate possibility, even likely I would say.
Pls don't worry about feeling lost and confused, many of us do even after a decade of seizures. Sometimes you just can't make yourself feel okay. That's why those in the same boat are the best to talk to, sure hope you stay on!
Oh and yeah, like Jane said, the bigger gaps, though not completely common, aren't rare either. I went 12 days shy of five years between the ages of 25 and 30. I understand your fear and frustration with it just showing up again out of the blue. SUCKS and makes you feel like hell. Only difference is I had been diagnosed a few months before turning 25, so already knew more seizures were a possibility.
Best of luck with your eeg and mri, glad to hear you're having them this soon. Please keep us posted!!

 

[Mrs Wirth]

My advise- Get your tubes tired and go off the pill.

My friend did that and had no more trouble. Tell your family your not to be stressed.

Goodluck

 

[Cint]

My advise- Get your tubes tired and go off the pill.

My friend did that and had no more trouble. Tell your family your not to be stressed.

onder: Hmmm....... Lucky friend. I tried that, too, didn't help.

My advice is to hear what Nakamova & qtowngirl are saying as it could be a hormonal or an electrolyte imbalance, low blood sugar, or a low infection. All can trigger seizures. Been there, done that.......

 

[acpollard2010]

the girls i believe maybe right i met my best friend on here and hers are always around lady time

 

[jyearta]

I cann't add to the great advise you rec'ed on the previous post.

I just want you to know that your fears are unstandable, we have all been there.

I hope you see your Dr. soon and it would be good for you and your Dr. if you keep a diary for Seizures, foods, medic. that has been added, loss of sleep, stress anything and everything.

When I took Vit. B12 over the counter and had seizures, I told my Dr. and she said that could NOT BE. So I stopped the Vit. the seizure stopped, I started the vit. back in 7 to 8 days and the seizures came back. I'm saying all this to say that sometimes WE have to try things to see if that is in fact what is causing the seizures.

 

[Claire7]

Hi!

Thanks for all your great advice - its been reassuring to read your comments. The more I think about it, the more I feel that it was hormonal/electrolyte imbalance. I tried to find out what blood tests they did in A&E and what the results were but doctors and hospital are not being too helpful! The only thing I found out was that my white blood cell count was slightly high and my red blood cell count was low indicating anemia. No one told me this - I had to ask!!!! I'm not even sure if they would have tested for an electrolyte imbalance at the time.

jyearta - really interesting to read about your vitamin issue. As I had an upset stomach and off my food in the 5 days leading up to the seizure, I bought some multi vitamins and pro-biotics which I had started to take 3 days before. I was also taking antacids as well. I have asked my doctor if I can be tested for food intolerences as well. I suffer a lot with bloating and tummy cramps which I have just ignored in the past. Now after doing a lot of reading up, i'm wondering if this could be a contributing factor???
Doctor is not too keen on testing me for this. I feel that they just want to me to accept that it has happened and keep my fingers crossed it doesn't happen again!

 

[qtowngirl]

Hi Claire,
Tell your doc that's too damn bad, you have seizures and you deserve answers. This isn't a friggin' head cold! And if he's a smart doc he would have already been on it - one of the first tests when seizures come out of the blue is for Celiac disease, an intolerance to gluten. Epilepsy and Celiac are fairly common, and the bloodwork to determine this should have been done right away. Esp. when you say bloating and tummy cramps, needs to be investigated for sure. Have a read:

www.epilepsytalk.com/2011/02/24/epilepsy-and-celiac-disease

 

[Mrs Wirth]

Hi Clair

I was interested in your thoughts re testing. My friends daughter had likewise. Natasha would be almost 40 now.

Dont let the Drs fog you off I think your possibly onto something. If you must go to another & a third or even 4th Dr until you find somebody to listen.
Not real comfortable with the vitamin tablets hon. They can cause tummy cramps and all sorts of problems too.

Be interested in what type of water your drinking?

Try if you can to just eat health food including veggies and fruit - rain water . If you can shower and wash your hair in pure water too- all the better.

Then plenty of rest - Sleep as much as possible.

Seriously, trust your own instincts re the Dr but think about leaving off all the vitamins for at least two months and see if things improve hon.

 

[Mrs Wirth]

Gtowngirl

I hope I am pressing the correct buttons in here,. This site is very different to anything i have used prior. I just wanted to say your spot on about the Dr and yes isnt wheat a major player in that. If Clairs eating bread made of wheat that can effect her too.

Anyway love the way you view the Dr- Priceless

Maybe if you suffer from this it would pay to go to a Dr who does not only work with seizures.

Maybe they get a little complacent . Have you see the work done in USA

 

[qtowngirl]

Welcome to the site Mrs Wirth,
If you're referring to me with the Celiac, I was tested back when I was diagnosed and had my first bloodwork done. It was one of the first things my doc suggested (don't stop until you find one you LOVE, it makes a lot of difference when they know what they're doing and will just sit and talk, covering all the bases).
The only 'work' I've seen/read about in the states is through neurology journals and articles. I get that there are bigger cities and great technology in some parts down there however we do what we can up here as far as what employment will cover.
My biggest issue right now is possible surgery and I do know that as far as Canada goes I'll be in one of the best hospitals I can. After 10 years of this B.S. I've learned that it's enough of a struggle, just do what you can do.

Claire: sounds to me like your doc is being a bit contradicting. Doesn't think you require meds yet won't let you drive? I think many on here would agree that that's fishy. If he thinks you're a risk enough that you shouldn't be on the road then why the hell is he not trying to relieve the possibility of more seizures? That's f'd up and no kidding you're confused. It's like 'yeah, I'm going to restrict you but not help the reason why.'
Any chance you can get a better doctor?