seizure help

[Megle]

Hi I’m new on here. I was glad to find a support group for this. I started having multiple seizures a day for around 40 minutes each in December and they have only gotten more frequent since. Does anyone have any tips on how to minimize them? I have tendinitis in both wrist and my shoulders now from the seizures and also carpal tunnel and it has only been a little over 3 months since they started so I’m a little worried about what is going to happen if they continue long term. Thanks so much! I’m sad to see so many people going through similar issues.

[Panther5000]

I am glad to see more people from the US joining. I hope there is someone on here that can help with your seizures. I personally don't have them. I have heard that a combo of Neuro PT and CBT therapy can help if they are caused by FND. Did you get no help from the doctor that diagnosed you? Is your seizures FND?

[Megle in reply to Panther5000]

I was diagnosed with psychogenic non epileptic seizures (PNES). I am in PT, OT, and talk therapy. The doctors that diagnosed me told me to work closely with my psychiatrist but I’m not having the best luck or getting any help from him unfortunately.

[Panther5000 in reply to Megle]

Psychiatrist don't help with anything but medication. You need a psychologist that works with patients with PNES. I would go back to diagnosing doctors and ask for a psychologist that can help.

[Lady4]

Hi Megle and welcome.

With seizures there are several types, do you know what type they are?

Also sometimes with seizures you can feel (read your internal body signs - interoception) that one might be imminent and have a little gap to regulate yourself before. This can be done by implementing a simple sensory strategy or using an external focus/grounding activity. Worse case scenario get to a safe space, lower yourself to the floor (if you can't reach a chair/bed) and let it wave over you.

Also have a seizure plan for others and wear a lanyard when in public (if you have them away from home) advising others (you can get them off Etsy or even make your own).

You could also keep a diary of when they occur, there might be a certain time of the day or even an environment that triggers them. Some environments are hard to avoid, but you can regulate yourself before with breathing exercises or just pace yourself, mindfulness etc before. Whatever works for you, so you are in that calm neutral state before entering what could be potentially stressful environment.

[Megle in reply to Lady4]

I was diagnosed with psychogenic non epileptic seizures. I have most of my seizures when I’m laying down. I have most at night time like right before I go to bed and all throughout the night. I wake up having them.

[Shimmyaway]

One contributor on here found that cutting out sugar stopped her seizures, and advised another accordingly ..hers stopped too...so worth a try. For your fascia problems, there is quite a lot you can do for yourself .. I am severely affected by this . Find a physio who specialises in fascia... .many, esp in the US should be trained in 'Anatomy Trains' (Tom Myers). Online look out for Deanna Hansen and Quinn ?? who both have many practical exercises for different parts of the body, which they call 'blocking' . You can feel the difference after the exercises.

Happy results day

[Lady4]

I was listening to the FND Awareness Day 2024 Q&A with Jon Stone and he mentioned conditions that some have with FND and Carpal Tunnel was mentioned. My friend had CRPS with this but I wondered if it had any connection with any other FND symptoms. Also someone who had seizures the same time every evening, wondered why and it seems that this could be connected to prediction.

To me prediction error comes to mind, expected them (as may they have been regular for a few days) and possibly the brain getting lazy and not taking in sensory inputs.

His general advice was to focus on the external environment, talking to someone, listening to your favourite song, playing a game - Sensory Grounding - can you push against it.

[Megle in reply to Lady4]

Can you explain what you mean by prediction error?

[Lady4 in reply to Megle]

Hi, pretty sure I wrote a post on it, scroll back through my posts (2 mths ago)*

Basically our brain predicts what our action/response is going to be before we even consciously think about it (eg autonomous walking) but it has millions (if not more) info to sift through to get an match. Although it should check the sensory inputs, it can get stuck in a pattern when things go wrong and become lazy and not correct the prediction based on the actual inputs.

Its often thought to occur in pain, anxiety and depression. Getting stuck in the prediction loop.

* Can you explain the role of predictive brain processing in FND?

[Lady4]

This is the slide I was referring to above.

Includes a coloured photo.