HealingWell
Search Close Search
☰

Pseudo seizures

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/3/2023 4:12 PM (GMT 0)
So, I am now having pseudo seizures due to sensory overload. Sound (biggest one), smell, light, touch and more are affecting my nervous system and causing aggravation and these pseudo seizures. I've never had these before (the seizures). My nervous system is so taxed. Neuro saw the seizures and said the movements are not typical of seizures and said they are pseudo. I am fully aware of what is happening and can respond sometimes. I also have memory of the seizure. The sensory overload is really affecting me and I can't find anyone to treat it. Nor can I find a treatment that helps. Tried a lot. Don't know if it's Lyme or something else.

Would appreciate your input. I am helpless and suffering a great deal.

Thanks!
Posted 11/3/2023 4:51 PM (GMT 0)
sorry to hear this

yes my guess Lyme or perhaps more likely Bartonella

bartonella is known to cause over excitation of the nerve cells in the brain.

Dr J talks about the brain and neurologic effects of Lyme and co in his videos i think he treats with anti-spasmodic anti-seizure drugs - but there is more info in the videos of his presentations - one i saw was at AONM so perhaps look on their site or search by his name, the word "presentation", and "AONM"

Dr B the bart specialist also talks about white matter dysfunction / limbic system dysregulation in bartonella patients as a key feature its in the understanding bartonella video put out with Ed Breitschwerdt and Galaxy

https://www.youtube.com/watch?v=njywmmpjiku

i hope its of some help
Posted 11/3/2023 5:36 PM (GMT 0)
Would you mind describing these pseudo-seizures in a bit more detail? I'm curious.

I have been reading about misophonia extensively for a friend whose child is severely disabled by it. Sounds, movements, light, and sensations can all trigger it for her (not just chewing sounds, like most people think of when they think of misophonia triggers). Her biggest triggers come from voices and from her mother, including the way her mother breathes, moves her head, moves her right arm, and the way her hair moves. She reacts with stomping, jerking her head back and forth, balling up her fists and/or clawing, and roaring. She will fall out of a chair while doing this at times, and can't help it, although sometimes she can moderate the intensity of the reaction voluntarily (like if she's hoping not to be embarrassed in front of friends). She feels distressed when it's happening, and is tired afterward, but remembers the episodes. Sometimes this happens dozen of times per day, and it worsens with overall sensory load and stress.

What happens to you?

I'm wondering if this friend has tick-borne illness, of course, and also wondering you would benefit from misophonia treatments that target the nervous system reactivity.
Posted 11/3/2023 7:05 PM (GMT 0)
sunfun which supplements are you taking? I had these and realized it was caused by too much folate supplementation. When I quit taking it the seizures went away.
Posted 11/4/2023 2:59 PM (GMT 0)
Is there mold?
Posted 11/4/2023 5:14 PM (GMT 0)
Thanks Garzie, I was hoping they would give me anti seizure medication or something in the hospital but nothing. Psych ignored me too. The neurologist said its not neurological and its something psych related.

Sara: I am in distress when it happens, major aggravation and get very exhausted after its over also. It all feels very taxing on me physically because I'm already weak due to CFS. So the movements are exhausting and take a lot out of me. What happens is lots of shaking in the body. Flailing arms, hyperventilating, head shakes back and forth (like I'm saying "no-no"). It's like I've lost complete control of my body. Fight or flight mode. Smell and sound are the biggest triggers though when I was in the hospital I couldn't even lie down on my bed because it was electric bed and I couldn't bear it (sensitivity to electronics too). I noticed that when the dr flashed a light in my eyes it immediately triggered the seizure. So light sensitivity is an issue too. I don't know where to find out about misphonia treatments. Tbh, I think i need something more than that. Previously, homeopathy and LDN did wonders for it. My brain was so calm but symptoms came back. I feel like I need to take something that will calm the nervous system down, something that can target the brain directly. I did DNRS a few years ago, didnt help but I didnt have the seizures then, just hypersensitivity to sound. It would make me weaker.

Rainy: Only iron infusions. I am on TPN so I get multivitamins in that. Not sure if folate is the issue.

Walking by faith: I just moved a few months ago into a basement. Nothing visible in terms of mold. I did the mold test on myself a while back (before I moved here). Even posted the results here I think. Nothing major. The seizures started when I was admitted to the hospital, there was a major sensory overload there. At home I didn't have this problem.
Posted 11/6/2023 12:32 PM (GMT 0)
hi sunfun

i think you need to find a different neurologist - as these are clear neurological symptoms - and if he is saying they are purely phycological - i think it means he / she does not understand the mechanism and is therefore unwilling to treat you with anything.

in the meantime you might get some partial relief from things that calm the excitory neurotransmitters - eg. l - theanine, pasque flower tincture

i would not expect these to be a miracle cure - as if infection or other ongoing inflammatory process is the driver - which it typically is - then this needs to be addressed in order to make major strides - but they can moderate symptoms enough to help stabilise you and make life more bearable

i think DNRS or other mind body technique that calm the CNS can help also - even though the driver might be biological - its often a case of pulling on many small levers to help get things going in the same direction. time in nature can also be very calming, meditation too works well for some people.

LDN could help - but be aware that there is often a uptick in symptoms before the benefits are felt with ldn - so i would go carefully there - or perhaps use this once things are a little more stable - and go v carefully - starting at a lower dose than before - and increasing only v gradually
Posted 11/6/2023 1:48 PM (GMT 0)
Hyperacusis was one of my worst symptoms early on in my illness. At that point, I found acupuncture really helpful. Craniosacral therapy also can be very regulating for the nervous system. I mention these first because honestly I really enjoy seeing healing practitioners. They seem to connect with my body much better than physicians, and often point me in more productive directions.

I remember you tried DNRS, and I'm sorry to hear it didn't work out. How about other practices that regulate the nervous system, like tapping, vagus nerve exercises, guided visualizations, mindfulness, breathwork, playing an instrument or singing, and yoga?

Hospital settings leave my system absolutely frazzled. I definitely understand feeling an uptick in sensory and neurological symptoms after any hospital experience!

Did these symptoms begin or considerably worsen when you moved into a basement? I searched for mold testing results, but I only found your urine test results, indicating what your system was processing out actively at the time. If your basement home is exacerbating your illness (which fits with your symptoms) then it might be a good idea to do an ERMI test on the space. Some of the most toxic molds grow in finished basement spaces. Stachybotrys loves drywall. My mold inspector instructed us never to buy a home with any finished basement space because anything below-grade is subject to constant dew point condensation, and any porous materials (especially drywall and manufactured wood composites) will grow harmful molds. I know this is a really uncomfortable suggestion, but I would relocate if at all possible, or at least do an ERMI test ASAP.
✚ New Topic ✚ Reply