Just diagnosed

[StarfishRae]

Sorry but this is a long story.

I have had seizures since I was about 16 years old. I have grand mals or tonic-clonic - not sure what they are called but I basically pass out, go rigid, shake and eyes roll and then feel awful afterwards. They used to happen but usually I'd not eaten much and drank alcohol the night before so I didn't tell anyone as I thought they would just say "eat more and drink less". My mum found out though and took me to the GP when I was about 18, he then referred me to the hospital for a CT scan. The CT Scan was clear and I was told it was probably just fainting episodes. So I sufferred for years of seizures here and there, granted, they were not that often but when they did happen they were horrible and frightening.

During my first pregnancy they got terribly worse. I was having about 2 per day or more for the first 4 months and about 4 per month after that. I felt awful and when I told my midwife she just said - it was just my fainting and it was all part of pregnancy so I put up with it. Luckily I had a beautiful daughter with no health problems (so far).

After a 2 year gap I endured another pregnancy and the seizures were just as bad or worse than they were in my first pregnancy. I didn't speak to anyone this time as I didn't want to sound too complaining if it was "normal" and all pregnant women go through it.

Anyway, my 2nd daughter was 10months old and we all went to pizzaria for dinner one night as a little family. Afterwards we went home and put kids to bed and had a fairly early night. that night I woke up and had a seizure and felt awful afterwards, I slept for a bit then woke up late morning and had another one. I wasn't pregnant, I had been eating very healthily the only alcohol I had was one small red wine, so it was totally out of the blue.

I decided it was time to get back to my GP and speak about this. When I explained everything from the beginning and told him what my seizures were like he said I should have been referred to a neurologist 9 years ago and my midwife should have done something about it during my preganancy as having seizures whilst pregnant is very dangerous to the baby due to lack of oxygen.

Anyway, I've seen the neurologist eventually and within 5mins she diagnosed me with epilepsy. Although I have to say - she didn't sound too convincing. I feel weird, nothing has been explained, I've just been put on medication and had my licence taken from me and I'm expected to get on with things like everything is ok.

I think I'm just looking for advice, support and to hear that other people have gone through something similar.

 

[Nakamova]

Hi StarfishRae, welcome to CWE!

Unfortunately it often takes a while for some folks before they get a diagnosis -- I'm sorry your journey was so long. Has the neurologist scheduled an EEG, just to get confirmation?

Since your seizures got worse during pregnancy, you may be sensitive to fluctuations in estrogen (a known seizure trigger). If the anti-seizure medication you've been prescribed doesn't do the trick, or has problematic side effects, you might want to ask about being treated with progesterone.

Best,
Nakamova

 

[StarfishRae]

Thanks for replying Nakamova. I guess it's partially my own fault that it took so long to diagnose since I hid it at the beginning and I'm a quiet person so I probably didn't give enough details when talking to GP's or Midwives etc.

I have to go for an MRI tomorrow and and EEG next week. I've heard that quite often these tests show nothing anyway.

I'm on Keppra at the moment and the main side effect I've noticed is sleepiness but apart from that coping with it ok. It's the idea of it all that I'm struggling with the most I think. I'm still trying to decide whether or not it really is epilepsy or if I have just had bad fainting fits all along.

 

[Nakamova]

The EEG and MRI may well come up negative. But if they do show abnormal brainwaves or some kind of structural anomaly, then you'll have some answers. In my case, there was nothing significant on the MRI, but the EEG very clearly showed brainwaves characteristic of epilepsy, and that was that.

"Going rigid and shaking" as you you describe it sounds more like a seizure rather than a fainting disorder. I know epilepsy can be a scary diagnosis, and I hope you don't have it -- but if you are having seizures it's important to control them. The more seizures you have, the more likely it is that your brain will get "in the habit" of seizing, and the easier it will be to have seizures in the future.

 

[StarfishRae]

Yeah I think you're right - it does sound more like epilepsy. I guess I should just keep taking the meds and get the seizures under control.

 

[nana1]

Welcome StarfishRae. I am on 3 meds, so be happy you only on 1 med. I have had seizures for over 50 years.

You going to need to write out question before you go to your next appointment. You have question about your health due to this ask the doctor.

 

[Krista2882]

Welcome, Starfish!
Yeah, It is weird to get diagnosed with something as major as epilepsy without knowing the cause. I think I heard that most people never find out the cause. A lot of people know their triggers, but not the root cause. Just make sure they give you all the important tests- EEG, MRI (to make sure there are no brain tumors or anything like that). It's good that you're on meds, now. They may have to be adjusted over time. I'm on Keppra too, along with Tegretol and Lamictal. My seizures are mostly under control now. Once your seizures are under control for a certain amount of time (it depends on your state's laws), you'll probably be able to get your license back.
I went undiagnosed for a really long time, too. I started getting seizures when I was 11 or 12. I didn't know what they were, but now I know they were simple-partial seizures. I would mention it to my parents once in a while, but they would just kind of brush it off as "anxiety" (because of the shaking, I guess). I don't think seizures even entered their minds. It never entered my mind, either. Finally, when I was about 14 or 15, I went to a pediatric neurologist. He actually diagnosed me with Epilepsy, but didn't do anything about it- no prescription for meds or anything! I didn't know anything about Epilepsy. I had no idea it was something I could take medication for and that it would get worse if I didn't. So anyway, it kept getting worse until one night I could barely sleep because I was getting so many intense simple-partial seizures, and then one generalized into a gran mal. That's when I went to my GP the next day and started on meds right away. I was 18 then. I've been on meds for 11 years now, and it took about 8 years of medication adjustments to get my seizures mostly under control.

 

[MuayThaiFighter]

When I was 16 I had weird episodes, usually drinking did play a part in weird eye rolling. I just ignored it and was constantly told nothing physical was happening. Later on things did get far worse. The original diagnosis was thrown out and now im on meds and I know it is very rough. Hard to tell people, hard to except. But I can relate how you feel and wish you the best. I am sure many other share that view as well. God bless.