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- Опубликовано: 16 сен 2024
- I was seizure free for 3 months until the last couple of days. I collapsed and had a full on seizure in my local shop whilst with my 5 year old son.
I had 3 in the shop and one in the ambulance.
I am absolutely gutted - my mobility feels worse, I'm exhausted, muscle weakness and dizziness.
I just hope this isn't the start of a FND relapse.
#fnd #fndseizures #fndrelapse #weakness #pacemyself
Sorry to hear that, they are back Chris. The worst I've had in public was losing the ability to walk at a self check out. I explained to many people what FND was that afternoon. I was there for about 15 minutes standing and vibrating away. To your point, it is soooooo hard not to overdo it on those great almost normal days. I find for me that is the most frustrating part. Remember, they went away and they WILL go away again. Keep on pushing and never be afraid to let people help.
Thanks for your comment. That must have been really tough when that happened. I can't imagine how hard it must have been to explain to people what was happening. That, for me, is the hardest part. People don't understand it. But I think the awareness is there now. 🤔🤞
I hope.youre well and managing ok
@@ChrisCFNDjourneythere certainly is more awareness , especially in the UK. Here in Canada the closest dedicated treatment is a 5hr drive away. I am perfectly open and honest with people and am tryinag to get out as much as possible. At my daughters soccer games I am a jerking moving distraction, but I do t care. Keep posting I love seeing your updates.
I feel your frustration I have had a couple of small episodes this week.this takes time to adjust and accept your condition.i have been dragged off the train when I have become paralysed.
People just assumed I was drunk.usually my episodes start with tremor then facial paralysis,when the facial droop resides I have experienced full body paralysis this happened last year in the chemist they called the ambulance it usually resides depending on how bad it is.in these times I take lots of rest and use my walker or walking stick to get around and in a couple of days I feel better.the nhs seem to give you good care compared to the Australian system they are not educated enough on this condition to provide the care needed.stay strong you are not alone in all of this your videos are really helping people myself included.xxxxxx
Thanks for you comment. I'm really sorry to hear that you've suffered lately. It's so hard when we have days like this that can then turn into months as it's so hard to recover fully. I dint4 think I ever have done. My mobility is even worse now and I feel weaker. Going to hospital was tough as I knew what would happen and that I wouldn't recieve any treatment. So all a bit of a waste of time. But the paramedics were fantastic.
I hope you're well managing OK atm?x
@ChrisCFNDjourney my episodes aren't as bad as they used to be ill probably have a severe one about twice a year I often on a daily basis suffer from facial droop and tremors which I just have to live with.been stressed looking for work so I've had the little bastard reard it's ugly head for a bit I just try and sleep it off and keep on walking as best as I can once you get to know the pattern of your episodes you can prepare for its onset I usually feel when I'm going to have one if I'm out that could be any seat near by you are buggered if there isn't one though lol I eventually had to have a sense of humour about them it helps me get through it.xxxxxxxxxx
I am so sorry you had to deal with that. Hope all heals up quickly... you're not alone. I have been seizure free for many years now. It takes a lot of mindfulness. I have unfortunately have had tremors come back. I had seizures to the point there were several per day for over a year. I am glad they're gone.
So sorry to hear this. I had a recent seizure after a fall while out hiking and it really hits you hard - it's a set back for sure. (I hadn't had one in a year.) Never had one in a very public place, and I can't imaging how awful that made you feel. I hope you can have a period of seizure-free time to get your head around it and feel better... Better days are ahead. Stay positive.
Thanks for your positive comment. I really find it hard after each seizure. As you know it's exhausting and draining. I feel like I've gone back a few weeks. Gutted. I hope you're well and managing OK after your episodes?
Hi I have fnd too i suffer a lot with paralysis full body which lasts for 4 to 6 hours and then the seizures start and it really does take a lot out of you and I hope you feel a bit better today and keep up the good fight 👍
@JuliaSawyers hope your managing OK and keep your spirits up take care!! Xx
@JuliaSawyers sorry to hear you suffer with this illness too. I hope you are managing OK now?
@ChrisCFNDjourney such a positive and caring man you are chris thank you for your positivity with such a hard condition! :)
@@ChrisCFNDjourney thanks for the reply ive had it since 2019 and ill be honest it's scary at times i also have arthritis in many places lol so I just take one day at a time i was a 100 miles an hour person loved walking and now I have to use crutches and as you know it's a bit of a head doer but it's just nice to be able to have someone who actually gets it hope you are doing better at the moment have the seizures slowed down for you?
Hi Chris , really really sorry to hear you experienced this. It must be so painful physically and exhausting. My FND is very different to yours and many others. It centres around emotions. If I’m in fright or flight my nerves kick off causing a lot of pain, muscles ache and I dissociate and go into shut down sleeping for hours after. My cognitive function is also affected especially by any small amount of anxiety or stress Etc etc . I’m in pain all the time and walking and just moving is hard.
So I don’t think I’ve much to offer other than empathy and respect for your determination. Sending much warmth and fingers crossed for an upturn in the weeks to come. Keep us posted. 😊😊
Thanks for your comment. It's so interesting to hear other people's stories and about how FND affects others so differently.
Having the seizure is so tiring and demoralising. It completely takes everything from you. I feel weaker and my cognitive function has declined since as well. It's so hard.
But we all suffer in our own ways. And I wouldn't wish this condition on anyone.
I hope you're well and managing OK atm?
Do you have muscle pain daily by emotions you mean anxiety do you have hypomobility heds found out it's causation with autism ADHD all diagnosed late at 44
Hi Chris, so sorry to hear this and for you and your boys to go through this in the public. I have recently started with the seizures again also in the past two weeks. The first one I believe was from trying to push through my exercise program, I was in a seizure for 40 minutes with no one home and no way to communicate to anyone, finally my oldest boy came home and got me into a chair, the second and third ones happened while I was trying to prepare dinner. First in trying to cut chicken to go in a pan and the second one while taking out potatoes from the oven, (I think the blast of hot air did it foe me. The heat and humidity are not improving my FND, lots of cognitive issues with speaking and processing what to say, also with sleeping. I'm hoping that you have better days ahead.
Thanks for your comment mate. Sorry to hear your seizuresbhave returned as well. Since Saturday my body is in bits. Cognitive issues, speech issues, fatigue, spasms, weakness. It's so tough isn't it. Gotta stop and think about what I'm doing daily and pace myself again.
Hope you're managing OK atm?
❤❤❤
Hope you're well and managing OK?
Hi Chris, I'm sorry to hear your seizures are back 😢 I myself suffer FND and find that if I don't keep hydrated I have more seizures (shutdowns) as I call them! So I totally get where your coming from with keeping hydrated and also temperature also if its hot outside and not having water also is a big one for me also so I also try and make sure I carry water with me wherever I go! Take care ❤ hope you start to feel better soon lots of love
Hi, thanks for your comment. Hydration is definitely something I need to work on. Seizures (shutdowns) are tough man! I hate them and kinda forgot how they felt. It was nasty being on a hard floor, spasming away and feeling helpless. 😢
Hope you're doing OK and that is again for your comment
@ChrisCFNDjourney yes, I'm not too bad I definitely know how you feel with hard floors, I still have them to this day! My last one was yesterday when walking my dog I couldn't move a muscle and when I came I had gravel marks in my hands from where it had imprinted on my skin so I totally get where you coming from take care pal! 💯❤️
Sorry to hear that . Hope u are starting to feel better x
@charlaneharris222 they are horrible wouldn't wish FND on my worst enemy its one of thr worst conditions I've heard of!! 😢
Thanks for your comment. Definitely hydration is a massive thing for me. I'm not great at it. So I will certainly ensure to try and keep hydrated. Especially with the medication too. Hope you're well and coping OK
That sucks hope you feel better soon
Thanks a lot. Hope you're coping well?
Sorry to hear this, it is very hard to pace isn't it. I don't have seizures but I have episodes where I can't walk or control my leg movements, also numbness. I recently had one while out with my dogs which was very distressing. I had another a week later which was severe. Went to urgent care but as I'm waiting for neurology and I didn't have any new symptoms I was sent home! I couldn't walk at this point! I have lost confidence in the health system if I'm honest. Hope things improve for you.
It's so hard to have much confidence when you experience what you have done. I'm so used to what they do if I am taken in. They want to make sure that I don't have any mote seizures and that I don't have any more symptoms. But I understand why. It definitely doesn't make it any easier though does it.
Thanks so much for your comment and for following my journey. I hope you're well atm and managing OK?
@ChrisCFNDjourney I'm currently recovering from my last episode, it was quite severe this time. I don't always go to hospital unless I'm really worried. Hope you are doing better now.
I was diagnosed with FND recently. I'm still very unsure about this diagnosis. For me it all started with getting headaches with certain postures or during certain movements. I developed getting a unstable feeling when I was doing my normal things, I would get a little nauseous and got a very agitated feeling in my head which caused feelings of dispare and panick. During all this I got the sense my right side of the face/head was tingling/numb, also I got the feeling my right eye/face was drooping. Sometimes I could actual see it in the mirror. It's a very strange annoying sensation, like the right side was left en vice versa. One day I woke up and was doing my thing and I noticed shaking in my hand and legs, in a short time my whole body was shaking uncontrollably like I had severe Parkinsons disease. Very scary. This went in for a while and in the weekend I went to see the doctor because I also developed a high pitched noise inside my head 2 weeks before. Tinnitus. I was sitting in the waiting room and when the doctor called me I stood up and followed him. Suddenly I was pulled to the right, mu balance was gone and I got very dizzy. I felt down to the right side on the floor, but I was conscious. The doctor wnt to get a wheelchair and right away my whole right side of my body was getting numb and tingeling/prickling. My vision was a little foggy at times and I was very nauseous. I was afraid that something was very wrong, maybe a TIA or worse. After some examination the doctor send me on my way. I was terrified and angry. I went to see the ER but they also send me on my way. In the following days I was seen by a neurologist and they admitted for a night in the hospital to do tests. They made a CT-SCAN and multiple MRI-scans. Meanwhile I still was nauseous when standing up and my right side still was tingling/prickling, also my lower right leg was feeling like it was burned by the sun. All the tests were good and when they released me they said it is probably FND. The weeks after were hell. I couldt bare anything, all was too much for my brain. Lights or daylight, moving around, playing a video game or watching tv, taking a shower etc. My brain was overstimulated. One time a few weeks after I went out to dinner with my family. I thought I was getting crazy. The noises of all the people in the restaurant was amplified and if was if all the people were inside my head. I was very tired and nauseous after. It took a long while before my brain wasn't so sensitive anymore. It frightened me a lot. This all was around January. While writing this I'm still not my old self. The symptoms are getting worse again, numbness on the right side. Face, arm, legg. Extreme fatigue, dizziness, unstable feeling etc. It's a long comment, probably left a lot of symptoms out like the cognitive ones. Memory, speech were I just not now what to say like I can't find words. Anyways, whoever reading this..does it sound familiar and can I be certain that this indeed is FND? Sometimes I'm still unsure about it and thinking back at that incident at the doctor I still don't trust it. I even feel a bit traumatized by it all.
@nils1471 so sorry to hear you're going through this. What you describe is what I get a lot of as well. They think thisncould all be due to my hemiplegic migraines - these have 3 stages and each stage have different symptoms and can vary all the time. Sensitivity to light and noise, dizziness caused by movement, I could collapse, yawning, numbness of my limbs etc. All on top of my fnd or triggering my fnd. Im also going to do another video as I've just had a tilt table test and have had a positive reading which means i have definitely got another condition which the neurologist needs to sit and work out which one it is.
Do you take any meds?
@@ChrisCFNDjourney yes I have had the tilt and have positive pots dysautonomia but it's likely from fnd since it's causing all the miss communication in the brain
I fully understand why you are so frustrated it is a horrible situation
I got diagnosed by a consultant within 30 seconds of seeing a doctor in hospital as I went in straight after my Covid Jabs
My walking balance brain fog you name it but as it was a Friday they said your scans are clear it is FND nothing to do as it is all in your head so sent me home,
Since I have got worse having falls my tremors are so bad can’t cook have a shave nothing so depressing and all I get is you have FND as they see it on your notes and go with it
It is scary my consultant said you must of had a unhappy child hood I said I am 60 and what I can remember it was a proper child hood it was fun tough but nothing out the ordinary
They don’t care about the pain the trouble we are having it is a killer this condition which they don’t understand
I hope you are getting better treatment than me
Keep on fighting
So sorry to read this mate. It's awful! To be honest I can't fault the care package I have recieved since diagnosis. They're keeping an eye on my due to worsening symptoms and wanting to rule out MS. so we'll see how iit goes. Life is bloody hard at the moment any way without this crappy condition on top. Keep fighting 💪
@@ChrisCFNDjourney it certainly is so many people don’t realise what we are going through and every day we wake up we don’t know what sort of day we are going to have
Today my tremors my walking and balance is absolutely horrendous I am finding it hard as I can’t use my hands I can’t shave I have to rely on my daughter to shave me and do the cooking she is amazing
I am pushing for a full body scan with contrast and a lumbar puncture so next time I see my consultant I am going to ask
I used to look after a nature reserve done so much for the community all voluntary then having my vaccine to getting this it is heart breaking keep on posting please they are brilliant
So sorry to hear this, so frightening for all. May I ask have you had a cerebral angiogram, especially looking at venous flow through neck ? Any recent Lumbar punctures to check cranial pressure?
Hi, thanks for your message. I'm hoping that's the next thing on the list on the plan for me. I had an MRI 4 weeks ago and still waiting on the results. Hopefully not too much longer now. Hope you're managing well?
Running water in legs many years
Its not easy curently my legs spasming or dystonia they feel dissconected abd static eletrical like the old tvs very very painful
Do you have hypomobility chris its highly comorbid with fnd ive found
Hi, thanks for this. Not sure. Maybe something to look into.
@@ChrisCFNDjourneyit's highly comorbid with ADHD autism ime late diagnosed 44 since son's diagnosis have you had anything prior to this
Listen to ruqya dude
@sumk66 thanks, who's raqya?
@@ChrisCFNDjourney ruqya RUclips it..listen to Surah fatiah...it's recitation..I've been praying and listening to it and I have been able to walk better for over a year now..and my fits have stopped..do you get nightmares..sleep paralysis at night?
Is your prostitis bacterial ir if its not its related to fnd pelvic pain years decedes since broken tailbone at 17
Unsure at the moment. I have 2 weeks of strong antibiotics. So hoping g that helps. But a week into it and rhe pelvic pains are there consistently
@@ChrisCFNDjourney sounds like pelvic pain like mine do you have hypomobility if so what happens the brain tenses the muscles fascia causing trigger points very hard to cope with blessings to you