Do people take anti-seizure medication for FND seizures?

[seamuspg]

I am curious if people take anti-seizure meds for their FND seizures since they aren’t often classified as epilepsy. I was diagnosed with a temporal lobe epilepsy with partial focal seizures just over three years ago. The Doctor who gave me my recent FND diagnosis said that maybe that was what was causing the “pseudo” seizures. I have stayed on my anti-seizure medication (Lamictal) through all of this but I do notice during my flareups having more of these déjà vu / altered consciousness episodes and I’m wondering if I’m still seizing a little bit. I don’t see much on here in the way of treating the seizures, so I am just curious.

[Brokendeer]

Hi I have Motor FND, not Seizure FND - but I know some people who do.

I would be very careful about what is `organic' and Epilepsy and what is considered FND Seizures.

Epilepsy: I understand you need medication to reduce the frequency/severity of attacks.

FND Seizures: the medical profession agree you do NOT need Epilepsy medication because it does not work on the brain to change anything. Instead you are advised to undertake Cognitive Behavioural Therapy, Breathing exercises and stress management techniques. The combination of these are thought to reduce frequency and severity of FND Seizures without meds.

If you are unsure, an EEG monitoring session and medical professional observation of several of your seizures, should identify what type of seizure you have - there are obvious differences with FND Seizures.

Good luck, look for the calm in the Storm!

[LunaBrownFND]

I was diagnosed with TLE with totally clear EEG and MRIs. They diagnosed me off symptoms. I did try Lamotrigine but not for very long because it made me feel sick all the time and to be honest the auras and dejva vous seizures weren’t very often. I hadn’t had anything for 2 years then had a phase in Dec 2020 for about 3 weeks where it was most days and all night or a few nights then it went. If I was having them all the time then yes I would medicate because I couldn’t live with them solidly. In the case of FND then no the meds don’t do anything, they only control epileptic seizures. I have had 2 episodes since Sept that present as FND and defo not epilepsy so now I’m doubting the TLE but who knows! I’ve heard that TLE can be medically resistant sometimes and tricky to control with meds. We’re your brain scans etc abnormal?

[seamuspg in reply to LunaBrownFND]

Thanks for reply. I’ve had eegs where no seizures were detected ( nor did I experience any while hooked up) but they did show some abnormalities originating from temporal lobe.

[Wonkys]

I tried them for a few months. Not effective for me but no side effects I could detect.

[cocoferraro]

Hi Hon,After so many tests etc I was diagnosed with FND 8 years ago, I have been given PREGABALIN by my doc and am on the highest dose, also other meds too, but I understand that this med is given to people who have non epileptic seizures. I have been on it for 8 years and am sure that it is keeping me sane. I dont get lots of painful complications as I used to, and consider myself to be going steady. I still have loads of brain fog, back pain, balance issues and so on and so on... but am sure that if I did not take the PREGABALIN that I would be loads worse, perhaps even hospitalised. I have been to cognitive behavioural therapy, which helped some, but still need the meds. I think that everyone is difference and the doctors have to find the meds that suit you. Also I have an excellent GP-others dont, I have had all the tests and seen loads of brain docs, but with the help of my GP and the meds that she gave me I find that I am floating along quite nicely, I will never be the highly intelligent, self driven, unique person that I was, but have to GET what I am now.

Love to you xx

[seamuspg]

Thanks for your reply. Can you share how your symptoms present? Are they flare ups? Are they progressively worse? Do you have days where your brain feels normal?

[thinkin]

Hi,

Epilepsy and FND seizures are not mutually exclusive. One study found that 70% of epileptics that were intubated for being in status - ie. continuously fitting, were actually having FND seizures. So they are not totally exclusive.

I have had only one FND seizure a year before developing FND movement disorder. I stayed conscious, though I couldn't move with my jaw moving up and down. I think words like "pseudo seizures" is a persistent legacy from before more was known. There's nothing that is pseudo about them, but they are caused differently so medication for epilepsy won't work. There is a build up of glutamate - a neurotransmitter - in the brains of people with FND.

Glutamate is co-released with acetylcholine, so sometimes old fashioned tricyclic antidepressants can help as they suppress acetylcholine - but they can build up in some people and get cleared from the body to quickly in others. Histamine is a neurotransmitter that regulates the release of other neurotransmitters including acetylcholine, so stress, infection, injuries, allergies can make things worse.

People with gut issues also tend to have excess histamine. Asthmatics tend to have more histamine as we don't have enough sulfite oxidising enzyme so mast cells degranulate releasing histamine. Some people have problems making histamine, some people produce too much. It needs to be in a goldilocks zone. This may be why some people get worse during pregnancy and others go into remission as a placenta produces DAO an enzyme that breaks histamine outside cells down.

There never is a panacea for FND, but look into your whole health including what can be done nutritionally. Most people have to self experiment with methods that suit. CBT has helped many. The FND Hope websites can help with advice.

Hope you find your answers. If it helps, FND seizures do settle down, it's vary rare for them to last for the rest of your life. Even though it may feel like an eternity at this moment in time.

xx

[Shellymdb1369]

I seem to find that topimax has worked the best for me but I also have other things wrong with me. I also have iih and really bad sleep apnea.