help!

[dawn]

Ive been having seizures for 9 years and have been on tegratol same length of time.. Ive had EEG and a video telemetry test for 48 hrs and a few other tests.. Nothing showed up on test result.
I had a really bad seizure a few months ago and after i came out of it i noticed my had couldnt grip and fingers would twitch. When i tried to use it, it would uncontrollably shake..My new speciallist has wrote to me saying i have symptoms of a non organic basis in my hand. I wondered if anyone on this forum understands what this is as i have no idea. To top it of my specialist goes on to say i have just funny turns and she doesnt think its epilepsy, yet ive had other parts of the hospital (A&E, pathology, maternity,last specialist) say i have had seizures.
I'm so confused now and chest fallen.. After all this time being on pills that i might not need and that my seizures dont have a name or cause.

 

[Nakamova]

Hi Dawn, welcome to CWE!

The "non-organic basis" is just a fancy way of saying that there's no obvious cause. Your specialist could be hinting that she thinks it's "all in your head". You might want to press her for a clearer explanation. After all you're paying her!

And since there's some disagreement over whether you're having seizures or not, I would say it's time for a second or third or even fourth opinion. Keep in mind that a negative EEG doesn't rule out epilepsy -- many people with confirmed epilepsy never have anything show up on an EEG or MRI. One of the main ways to confirm a diagnosis of epilepsy is by what you are actually experiencing, and by whether or not AED meds reduce or control your seizures, or seizure-like symptoms. Aside from the bad seizure a few months ago, has the Tegretol made a difference? If so, then it seems likely that you do have some sort of seizure disorder.

It's a good idea to keep a detailed seizure journal -- describe what happens, when, and how often. the more information you can provide a doctor, the better. It can also help to track things like hormones, diet, fatigue, metabolism, stress, allergies -- anything that might potentially be a seizure trigger. Some people have been able to reduce their seizures by using special diets, or by avoiding known triggers like fluorescent lighting. You mentioned that you'd been seen by a maternity specialist -- often pregnancy/childbirth can trigger seizures, and in general, fluctuating hormone levels can be a trigger.

Best,
Nakamova

 

[dawn]

reply

yes tegratol has helped decrease the really bad seizures where i go into unconsciousness but im still having quite a few seizures.

My specialist reckonmended my partner to keep a diary on my seizures writing down times dates and what happens and any warnings. Which he has been doing and i have been trying not to hide away and have my seizures.

I have been considering going to a different specialist at a london hospital for another opinion but im not sure how to go about it.

 

[BuckeyeFan]

:cheers:

Welcome to CWE. Our little home away from home.

I have had E for 28 years. Most of my early EEGs came back abnormal. However, more recent ones were not always abnormal. My MRIs are clear.

My E is ideopathic, meaning it has no known cause. Over half of epilepsy cases are ideopathic. Maybe, non-organic is the same term in the UK. It doesn't mean you do not have E, just the cause is not know. Bottom line is you are passing out from something that REALLY sounds like a seizure. If a medication controls it, who cares what they call it.

Good luck.

:cheers:

 

[dawn]

reply:

unfortunately with out a name for the seizures it makes it differcult to get DLA (Disability Living Allowance benefit).

 

[Nakamova]

All the more reason to see a different doctor, ideally an epileptologist who can help confirm the diagnosis.

 

[dawn]

I'll get to docs and see if they will refer me to a better hospital and keep you posted.
As for a epileptologist ive never heard of it before, ive always seen specialist in the neurology department but will look it up.
Thanks for help xx

 

[tam bam]

Hi and welcome Dawn.

I agree with Nakamova and it may be time for you to see an epileptologist. I am in the same boat that my neuro doesn't understand a lot of the things that my seizures bring on either. I was diagnosed with epilepsy in Novemeber of last year and up until then no one would be believe me. I have some pretty crazy things that happen with my seizures. I have odd movements in particular body parts with my seizures as well and all the neurologists that I have told don't seem to understand. In fact they seem to be baffled so I opted to see an epileptologtist next month about my particular seizures at a research hospital. I asked my current neuro for the referral and he was happy to give me the referral. Will your neuro give you a referral if you ask? Do you have a general doctor you can ask for a referral?

I believe you, Dawn, that you may be experiencing seizures that are just not the typical seizures like me. Doctors need to realize that not all seizures are the same and when they are not they need to refer us on to Epileptologist. At least that is my humble opinion from my experience with seizures.

tam bam

 

[BuckeyeFan]

unfortunately with out a name for the seizures it makes it differcult to get DLA (Disability Living Allowance benefit).

That really sucks! When I first had mine, the doctor called it a seizure disorder, not epilepsy. However, I don't think it ever impacted my insurance coverage. Luckily I am able to work steady and have insurance.

Disablity for E is hard to attain here in the states as well. You have to have tons of evidence of uncontrolled seizures.

 

[BuckeyeFan]

I'll get to docs and see if they will refer me to a better hospital and keep you posted.
As for a epileptologist ive never heard of it before, ive always seen specialist in the neurology department but will look it up.
Thanks for help xx

Yes, this is where the difficult cases need to go. They are so much more focused. Sort of like going to an orthopdic surgeon versus a general surgeon.