Anyone else relate?

[Megle]

I have been diagnosed with PNES as of December 2024 and I have between 6-12 seizures a day and they last between 20 minutes to almost two hours each. I have been averaging 8 a day for the last month and they have been lasting about 45 minutes each. This morning I had my longest one ever and it lasted an hour and 50 minutes. Does anyone else have them last this long? For the last two weeks I can feel my joints pop and feel muscles tearing as the seizures happen. This morning it felt like my thumb completely dislocated from its normal position. Anyone else struggle with anything similar to this?

[ginganinja]

Hi Megle

I have been successfully treating my Acquired Brain Injury and FND including seizures since 2016 with medical cannabis oil and flower on prescription. Look for balanced 1:1 ratio of THC:CBD full spectrum oil and flower.

Everything else I tried from the Neurologist either didn’t work or gave me more medical issues than I had before starting the treatments.

[Lady4]

Hi Megle

What type of PNES seizure are they? Can a loved one tell when your going into a seizure and what do you experience?

I found this on a research paper, called "Psychogenic Nonepileptic Seizures" last Feb 24:

"Enhancing Healthcare Team Outcomes

PNES are paroxysmal events resembling epileptic seizures but without abnormal electrical activity in the brain. Recognizing PNES requires clinicians to differentiate between physiological and psychological origins. Diagnosing PNES involves video-EEG monitoring and psychological evaluation. Clinicians must approach patients empathetically, acknowledging the psychosocial aspects contributing to PNES. Management encompasses psychological interventions, such as cognitive-behavioral therapy, addressing underlying stressors. Patient education and collaboration with mental health professionals are crucial. This summary emphasizes the importance of a holistic approach, combining neurological and psychological perspectives, to effectively diagnose, treat, and support individuals with PNES.

It also mentioned if patients had experience trauma this should be treated separately."

[Shimmyaway]

In a reply to your previous post I mentioned that 2 contributors on this forum found that cutting out sugar significantly reduced the seizures ..have you tried that? Personally I have no experience of seizures.

If you get seizures mainly when lying down and horizontal, had you ever thought it might have something to do with digestive movements somehow triggering them .. just a thought .. I have found that a primarily plant based diet has reduced my shaking which always increases in the horizontal position.

Really hope you get some improvement and soon.