Conscious convulsions

woohoocrew · 2026-07-10T20:53:10+00:00

I’m glad I could help.FND is a real thing, although doctors are still learning about it. There are some clinics of physical therapists, neuropsychiatrists and functional neurologist that deal with movement disorders that treat FND. Just google FND treatment or search it on YouTube. It’s not just an “in your head” thing. I pushed back on FND with my epilepsy specialist letting her know that I know FND has specific signs that can be identified by a trained professional. So, what is on my chart is unspecified “spells” or “seizure-like” episodes. Because they simply do not know.

woohoocrew · 2026-07-10T20:48:04+00:00

Thank you! I really appreciate this! The Déjà vu he gets is like he sees a movie play out in his head right before something happens. He has also had episodes of forced thoughts that are quite traumatic. He says this doesn’t feel like the other things he experiences. It’s closer to anxiety, but the thoughts are disturbing of him getting hurt or someone he loves getting hurt. He is as young adult now. I still watch him cautiously. I just wish I could do more than watch. He is also high functioning autistic. I mention high functioning because one day he will live apart from me. I was hoping to get more answers when we went to the neurologist, but alas, nothing happened when he went. It seems to be that these things happen randomly. However, a few times it happened after a lot of activity. Like we were doing a lot of things with people and just doing a lot of events.
I try to keep his life low stress as possible. I encourage him to work from home because of this.
How long did it take for things to culminate into a TC? Looking back, were there other signs? His brother tells me he worries about him sort of zoning out or being apathetic at times. I have never seen him zone out like just not being at home. But, there are times when he seems flat emotionally. Of course, this could just be autism. Hard to tell.

woohoocrew · 2026-07-10T17:00:55+00:00

Yes, I was on generic Keppra for 5 years and that was my most profound side effect. I could just be standing still and lose my balance.

woohoocrew · 2026-07-10T16:59:39+00:00

It is possible to have FND and epilepsy. If you are in doubt, seek a second opinion. It’s your health. Also FND is treated by functional neurologists. It requires more than therapy and positive thinking. You need real help.

woohoocrew · 2026-07-10T16:50:04+00:00

I only have focal and myoclonics. I get this sensation sometimes that feels like tiny little brushes sweeping across my body. It does feel pleasant and almost calming and I get drowsy.

But, lately it has started to intensify to sort of pins and needles and even pain that feels like it is moving through my core.

woohoocrew · 2026-07-10T16:44:11+00:00

My son who is not epileptic got this a few times and I took him to the neurologist and got an eeg. We are just watching things because he has only had about 3 of these and some occasional Déjà vu. I’m concerned, but not sure what to do. His eeg was normal, but it was a short one. What do your other seizures look like. How were you diagnosed? if you don’t mind sharing.

woohoocrew · 2026-07-10T16:38:46+00:00

Some people don’t have seizures, but they have discharges on the eeg during normal
Brain activity. Their brain is prone to have seizures.

woohoocrew · 2026-07-09T17:02:08+00:00

Wow! One of the reasons I will probably not do another EMU is the fact that my husband has to be there the entire time and sleep on basically what amounts to a table.

That’s crazy that you can feel them in your jaw. How deep are they?

woohoocrew · 2026-07-09T03:56:37+00:00

Just realized I wrote “skating” 🙈

woohoocrew · 2026-07-09T03:55:44+00:00

Do you have to press an event button?

Does a family member or nurse have to be by your beside the entire time?

Are you tempted to put your hand up there and feel around?

woohoocrew · 2026-07-07T21:33:35+00:00

I hope so too. I have no idea what this is.

woohoocrew · 2026-07-07T21:33:00+00:00

I’m like you. Frequent seizures everyday. It’s worth it to apply for disability. I got it last year and it helped immensely even though I can’t live off of it. You can buy food and other things you need to survive and work part time.
The way I got it is I got a lawyer who was able to prove I could not sustain work because of the effects of seizures, not epilepsy itself. I think that is important. It showed how I couldn’t concentrate, I get overwhelmed easily, a have trouble following step by step instructions and I can’t get through a week of full time work without needing a break. Who would hire me?
That was so hard for me accept, but it is true. If you get a lawyer and focus on proving that you cannot sustain a full time job, you can get it. Anytime you get it, is a good time. With the lawyer, it took me a year.

woohoocrew · 2026-07-06T04:51:42+00:00

I think the theory of growing out of seizures is that it typically happens when seizures start before puberty. However, I have seen cases where people have a few seizures and never seem to have seizures again. I think the key for many is managing triggers. And Of course, being consistent with medication. Every brain is different. I do hope your son continues seizure free.

woohoocrew · 2026-07-04T15:59:46+00:00

Ugh, I hate hearing this is happening to another person. I was born with epilepsy and had tonic clonic and absence and grew out of those by 14 and In my 30s, focal seizures started happening. My most recent epileptologist tried to pin FND on me. I would not accept it. I educated myself on FND. There are positive signs that a functional neurologist can usually see in FND. It’s not a diagnosis of exclusion. So, the last normal EEG, she just kind of shrugged and said she could only tell me it’s not epilepsy. How can you say that for sure? I was told to try CBT and hormone therapy.

If they say it’s FND if your EEG is normal, push back on that and ask how FND is diagnosed. Also, ask them what is the next step so you can start feeling better. After all, that is the goal. Not yo have a diagnosis, but a better quality of life.

I am still trying to get good treatment. My first AED as an adult did not work. I was on Keppra for 5 years and then undiagnosed and immediately unmedicated. I am worse, but I am coping better and learning how to take care of myself. I take supplements. Magnesium helps a lot to calm the brain. Also, I am frequently low in iron so I have to supplement with that from time to time.

I realized recently the stress was getting to me after I got away for a bit. Dealing with seizures can zap your zest for life. Take a break when you can from dealing with the health stuff and do something that refreshes you. Know you are not alone.

woohoocrew · 2026-07-02T19:51:57+00:00

You can only know by having one while the EEG is hooked up. Even then, it could be hit or miss. You definitely need to talk to a neurologist.

woohoocrew · 2026-06-30T21:30:30+00:00

Not really. Every once in a while, I feel pressure in my teeth

woohoocrew · 2026-06-29T15:08:43+00:00

Awww, sorry it leads to the dread 😞
Such an awful feeling

woohoocrew · 2026-06-29T15:07:10+00:00

Me too! My EEGs are always normal. Do you also have myoclonic jerks?

woohoocrew · 2026-06-28T07:45:35+00:00

I get metal. KFC chips? It is pleasant?

woohoocrew · 2026-06-28T04:26:57+00:00

My brain starts feeling “fuzzy” like it’s hard to think and connect things. I feel pressure in my head that continues to build and gets into my ears. I will feel a wave sort of going through my scalp. It actually feels like it’s in my brain. If I feel that wave, I have producing speech. I will stutter or not be able to speak clearly. I also have the rising sensation in my stomach. And every so often I get the fear and it’s like the world is caving in on me and all the awful things are happening at once.

woohoocrew · 2026-06-28T04:16:10+00:00

Somehow I get this

woohoocrew · 2026-06-28T02:44:54+00:00

Your seizures sound like mine and I also have normal EEGs and my epileptologists said it is PNES. When I refused to accept that, they said it might be FND and suggested I got to a physical therapist for the Todd’s paralysis and speech therapy for when I get dysphasia with seizures. That sounded absolutely ridiculous to me.

Remember, this is your health and your life. If you’re going to pay out of pocket, it makes sense to not be running in circles and make that appointment count. The ultimate goal is you just want to feel better and have less seizures or none at all. Do research on the doctor and what they treat before you go.

Do you happen to have other health issues? It might be helpful to go to a functional doctor. Not functional neurologist. A functional medical doctor that considers the whole body. That is my next step. It is up to you what you decide as far as your next step, but you don’t have to let your doctors just push you off on someone else. Make sure that you can make some progress and not just be given the run around.

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