Anyone do an epilepsy test? - Functional Neurol...

Functional Neurological Disorder - FND Hope
3,835 members2,080 posts

Anyone do an epilepsy test?

Jesdue
Jesdue

I'm being admitted to the hospital August 20th to be tested for epilepsy because I've started jerking a lot the past two weeks. But they think it's not epilepsy. The neurologist said there's two types of seizures, epileptic and non-epileptic. He thinks mine are non-epileptic and he said that meant it was caused by stress. I'm really tired of the neurologists insisting it's a psych issue especially because the psychiatrists keep saying it's not. I highly doubt I'll test positive for epilepsy because they don't think it is and they treat a lot of people with it so they would know. But I don't know where I'll turn if it isn't epilepsy. I know there's something physical causing my symptoms. Anyone else do an epilepsy test?

12 Replies
oldestnewest
HiddenThis reply has been deleted
Jesdue
Jesdue in reply to Hidden

The neurologist said she's never seen this before. What good is that?

Hi Jesdue I was treated for 17 months for anxiety and depression, I was in agony with sciatica which moved up my back, shoulder, neck, face and finally the spasms went into my head. My mother in law paid for me to see a private neurologist as my dr would not help me. He sent me 3 times to a psychiatrist but would not send me to a neurologist, the neurologist actually worked in nhs too and couldn’t understand why my dr would not accept I needed nuerology. It seems if a professional is determined that you have stress, anxiety or depression they will not listen or help other then buckets of anti depressants. One professional I see told me I had migraines, the fact that the spasms had moved up my body into my head was ignored even when my neck had twisted to the right and constantly jerking. 17 months off miss diagnosed was depressing others on here have gone years, constantly fobbed off with drugs that don’t help and diagnosis that are false. If you’ve had trauma in your life surely you would know same as if no trauma you can’t just make some up to suit a professional. On every appointment I had wether I was in a seizure or not I got asked same questions over and over. (Are your parents divorced, has anyone died, have you been abused etc.. ) hopefully now with more professionals realising about FND this will not keep happening. We can only hope.

Sorry 😐 lost my train of thought there, non epileptic seizures to me can be frightening until they are explained to you. I just got lost in my head and at first was so scared, 3 years on and having been told they do not cause damage unless you fall I am more used to them, am unsure if they ever go away as if you overdo it they come back. My first seizures were through pain, then noise, movement and fatigue. Now I still have them through fatigue and have to pace myself constantly. When in a seizure I can hear everything around me and understand what’s being said but cannot respond, just frozen waiting until I unfreeze to be able to respond. At first mine would last hours maybe days as on my own I wouldn’t know, my partner was at work all day. They are scary at first but like all FND symptoms when you know more about them you can accept them easier knowing it’s part of this life changing illness. Wishing you all the best on your FND journey.

There seems to be an established link between migraine and epilepsy, and migraneurs with non epileptic fits are prescribed the same drugs.

Hiya I had a test for it needless to say it wasn't epilepsy !! Did however send me off on one and I was kept in hospital for 4 days !!

It’s very confusing to have episodes, I’m not sure if I buy the whole stress or past trauma thing, I try to keep an open mind about it. But for me I’ve never seen the correlation.

I’ve had two eegs, one was abnormal and one was normal. Abnormal one was when I was having them daily and I was diagnosed with epilepsy and normal one was after being on the keto diet and THC/CBD oils and having a lot less seizures( note my neurologist didn’t approve of my methods).

I haven’t actually been diagnosed with PNES, the whole functional thing was a suggestion at my last neurologist appointment I felt like was a way for the neurologist to pass me off because most of my tests were off but still in the normal range. Anyways what I’m saying is that it’s hard for them to tell you things that you don’t think are true, then they tell you that its typical for patients not to accept functional disorder or non epileptic seizures! Ha!

So the EEG only takes that slice of time to determine what your brain waves are like, the only 100 percent to know it’s not epilepsy is to have a seizure while being hooked up. Also it’s not common but people can have both epilepsy and non epileptic attacks.

If they prescribe you seizure meds please be careful with them. I had really really terrible side effects from seizure meds.

Also the worst part of the eeg is staying up all night! So hang in there and good luck. Keep in mind that no matter what they say there are ways to manage seizures and if it’s functional, it’s Still a REAL seizure that you can’t control.

I'm so tired of being told it's a psych thing. I got a letter from a psychiatrist saying its not but nuero still insists it is.

Hi Jessie, your post that you have put above is exactly what my neurologist has said to me a couple of weeks ago. He thinks my involuntary movements are non epileptic attacks, as the way mine present themselves ( quite violent movements) only affects left arm/ hand. For example I could just be sitting there and my arm will kind of go up in the air. Like you and others have said. I personally feel that my attacks are not purely 100% stress related, I feel there is something else that is causing it especially now that I’m experiencing new symptoms and I think I’m getting warning signs just before I get these attacks. my attacks have reduced gradually from 20-24 per day to currently 14 a day . I also think that the medication is working which is called baclofen. When I saw my neurologist a few weeks back ( before my attacks and noticed these new symptoms) he actually said to me that if it’s all stress the baclofen won’t work or do anything 🤔 hence why I also feel it’s not 100% stress ! I know stress is a funny thing.

Lastly I also have an EEG test on the 28th August aswell, so we will see, let us know how you get on, on the 20th August.

I have had the electroencephalogram (EEG) epilepsy test, which came back normal. I remember your recent post, and I'm sorry that I didn't suggest treatments. I suggest that you buy the Kindle version of the book Functional Neurologic Disorders, volume 139 of the Handbook of Clinical Neurology, from Amazon.com. You can listen to the book or read it. It is worth the $220 cost. In section 4, it has several chapters of different treatments for FND. After that, I also suggest reading the book "Overcoming Functional Neurological Symptoms: A Five Areas Approach". On Amazon.com, there are several books about non-epileptic attacks. It's not necessarily stress that is causing your non-epileptic fits. Here's an interesting recent video about non-epileptic attack disorder (NEAD), a.k.a. dissociative seizures: youtu.be/F_UPieQpxbk

good luck with the test. i have been diagnosed with fnd but absolutely nothing helps the severe pain in my head and the numbness down the left side. it has been 4 years and we are no closer to knowing why? all the best xx

You may also like...