I've been diagnosed this year. I've siezures. I've had stares. I lost my ability to walk for 4 days. I stumble in words all the time. I get tics like tourette's and jerking movements all the time. I've been told by neurologists, you can get through this it isnt epilepsy and I cant do anything for u. I see a therapist and it helps but theres times and days where I'm told that maybe i dont want to get better. Excuse me? But if i am taking baths for safety then i dont see how i want to stay like this.
My symptoms change and I'm not sure if there anyone who can relate but please someone reply Cruz i dont know what to do here
Get a second opinion. Then a 3rd if you have to. Ensure that your questions are realistic for the person you are asking it of. Neurology is a huge science, and your neurologist may not be the right type of doctor that specializes in this. If it is, find another, and report that gaslighting behavior to the medical facility. Nobody will help you through this because they have not even tried to empathise what it is that you are going through. Their brains can't comprehend that all of this could be true. You have to accept your reality and literally breath your way through each and every event. Keep up with a doctor, mind your nutrition, and just be kind to yourself. I have a lot of this myself. I have days my husband has to spot me in the shower because we don't have a bathtub. I was diagnosed 10 months ago. I've had it all my life. I developed it as a baby after being abused and tortured by my mother. My brain actually rewired itself to teach a baby to stop crying. I know this isn't going to be cured. Its always been with me, and as I age its just progressing. BUT, I know there is something that can be done. For at least part of this. The condition as a whole can't be managed but if you take it in parts its a much more manageable task. Ponder on yourself. Think of a specific something that you find particularly disruptive, and make that the thing you wish to change. Then ensure the doctor you are seeing specializes in that exact end. If you don't like the way the doctor treats you, go find another one. Don't trust yourself to anyone who doesn't respect your ability to know what you are going through. You are not alone.
I am so sorry anyone has told you that you don't want to get better. That is a horrible and callous thing to say. And I would switch providers if anyone told that to me. I've been on this journey for about 6 months. I get those weird "blank stare" fits too.
There's a few things that have helped me though.
For me, I found out a vitamin deficiency is what kicked off my FND. I was really low in B12 and my Vitamin D was almost non-existent. As I worked with my PCP to get these levels evened out, I started to get massive improvements. I mention this because while my neurologist found the Vitamin B12 deficiency, no one found the Vitamin D until about 2 months ago. The vitamin D has made the biggest difference, so if those haven't been checked, please get them checked.
I started seeing an OT. That helped more than anything else. She helped me with my cognitive stuff, and gave me techniques to use to get through this. Even though it's not epilepsy, a lot of the stuff that she taught me were techniques that were used for kids with epilepsy. And it helped a lot. If you can't get to an OT, maybe you can look up those kinds of techniques.
I started listening to binaural beats when I'm doing anything that needs focus. I have a track that I downloaded from you tube and I play it with music over the top. It helps me brain "re sync" when I have those fits during the day and I'm working.
The other thing that really helped was doing a guided meditation. Everyday. Ok, I know how hokey and hippy that sounds. But through that meditation, I learned how to "reset" my brain faster when a catatonic episode happens. It took about a week before I saw any real difference. But it DID help. A lot.
I work in IT. So I started thinking about my brain like a computer that didn't get a software update. It's not my fault. It's just what happened. And now I'm installing "patches" to fix the issue.
And also, medical marijuana and CBD has been extremely helpful. Honestly, probably more than anything else. With the right amount of CBD, I don't feel a "high" from the THC at all. So I can function during the day.
I know how frustrating this journey can be. But you will get better. We're all supporting you.
I can relate to this, I also have been told that maybe “I just don’t want to get better”, it’s just insane!! I also struggle with some of the similar symptoms including loosing the ability to walk at times, staring spells, and seizures. It all really sucks. I’m glad that you have a therapist, as I know how hard it can be. I’m going to my first therapy session soon to deal with all of this. Keep fighting! Wishing you the best!
thank you i am going to try cbd oil, hopefully t works, because i worry about being under the hood of a car or something and get hurt
You lost your ability to walk and they told you that maybe you don't want to get better?!! Shame on them. I would be pissed off if I were told that. You took that comment pretty well it seems...better than I would have. I too have time when I can't walk (the majority of the time), tics like Tourette's, jerks, echolalia, palilalia, functional chronic pain, and more. Buy books on FND if you can. Watch as many videos on the fndhope.org website as possible. Your brain may have anxiety about the FND itself.... I don't know how it works.
hi yes I can relate
and I know how you feel, but must hold on to the positives.to survive this more feel crap and go down you crying good helps suppressed emotions, I could even lift wood up yesterday and trolley co ordinated side ways but I made my selklf get it to the car
then struggled getting it in as every to heavy feeling
and burst into tears
as found it hard but why sat there after cry I felt better because I though of my family who need me …. I know how you feel I not walked correct quite some time and had all comments ah putting that on right by me as well which have ever walked through argost with weird walk jerks keep coming out but you know what mate you got to carry on if I can do ut you can
scream cry anything makes yiu feel better
I know how yiu gfeel chick,one minute im myself then feels like someone hitting on back skull the more pain reaches to of my skull mpore find hard movement and jerky odd gait
and chronic pains crippling but yiu know what yiu cant give in
more positive you think better it will be on your nerves.
I used to beable to write with out missing words or misspelling and cant use right hand write
always remember everyone on this support group as we all want to help each other and I feel this is very positive I hold on because I belive there is light at the end of the tunnel and I have beautyfull family and amazing little puppy who needs her momma and I carry on as Im a fighter my father would say
things come to us as e are strong and we will get through this my fathers amazing and sopostive hey I must get the positivity from my family
instead feeling and looking on the gloom side get up, and go iut for walk
make each day count more you say you cant do it the body brain tell you cant do it use reverse pnycology tell your body you can do it heyt I know its hard trust me
but its much easier to give up, you need to find your strength and carry on
you can you you arer going tot do it so get up get out
mate I drag and jerking going up the hill just so meet my daughtrer
but I make my self I fight the pain
and jesus never felt chronic migraines and leg that will not bloody move butt come on you can do it u belive in you.
don't give up keep holding on to t positivity of yiu are and can get better
even if just makes you feel better, sing laughth it bring outr your happy hormone serotonin spray magnesium on you everyday
Fantastic messages I’ve jusr read, I needed to read these today, am so glad I have, am deteriorating as just had enough and have pushed to hard, know I need to relax, and conserve my energy but my daughter and grandchildren came over, never see them all together for years as the noise just increases my pain and seizures but it was HEAVEN just for them to be here. I love Christmas, I’ve not seen my family at Christmas for 4 years now, it’s all the work before, cleaning, organising, tree to put up, I’m shattered thinking about it but I will get there this year, I’ve promised myself. Thank you today for the lovely, helpful, supportive messages I’ve just read. Great hugs to all. 🤗🤗🤗🤗
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