Hi I have been diagnosed with fnd after 3 years of trying pd treatment.
I have a severe right leg tremor and left hand won't close also insomnia is a major problem.
2 weeks ago I was walking my dog and found myself staggering and barely able to walk there was no dizziness just no ability to control my direction.
It disappeared again after 10 minutes. The doctor put it down to a Cerebral event.
I'm a full time carer for my wife.
I honestly can't think of anything that may have triggered this conditions and still think that fnd is another way of saying that they don't know what is going on.
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Comfortablynumb
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I just want to share with you my story and its had recently changed since Tuesday.
Like you, I was discussed with the neuroligest given me a diagnosis of FND my husband and my adult children where appalled too an insisted that she dose more investigations.
They seen the Seizures I was taking and is only when I'm fast asleep.
Also that they are nothing what's so ever like what the unfortunate people taking NFD Seizures they take on YouTube. Plus the fact that I'm just walking and suddenly my legs roots to the ground while the rest my body is walking and I fall flat down face first. Thank god only once I bounced my forehead off the ground, I managed to stop it the rest of the time even though I did irattate the ligaments and tendinitis in my arm and the Seizures caused bursitis and tendinitis and tennis elbow.
The neuroligest explained on Tuesday a lot better then what she did in May giving her diagnosis. She said my Seizures are not epilepsy but they are related to my insomnia and sleep apnea.
She said to start reprogramming my brain. My hubby and I looked at her and looked at each other to say without words okay this one is totally off her trolley.
But then when we got home, we said for a laugh we would look it up an see the funny comments that be probably posted on the subject. But instead we where left gobsmacked. So I done my own total research since then and this is what I discovered.
That the brain exams and studys shows how pain magnafies and spikes of the pain sencer points in the brain and it magnafies the other pain points in the brain. This inturn causes subconscious blankness, meaning our minds are so functioned on our brain focusing on the pain that our subconscious and our conciseness tune in only to focus on our pain giving the pain the attention that the body signals get distracted and can't receive the message to the limbs to move. This causes yours and mine and everyone here explanation of why our body's are going the way they are and why we have Seizures, lack of body function movement etc. It also flares any other physical issues we have.
I myself have some very disabling ones but fought keeping out of a wheelchair but this FND changed that bit only temporarily. Because it dose not happen over night it takes time and patience but also the will to fight to get your physical health back and your life.
What I myself do now since my research started is I log onto my computer and I would type up anything that has taken my energy in the last 24 hours that may be causing annoying, unplesent, angry or upsetting emotions. I then type how can I either resolve or handle this situation.
I close my eyes after the typing and breath in white positive light of oxygen t into my lungs and I count to 5 breathing in, sigh out through droped jaw and parted slightly lips grey stail oxygen carrying all that harsh energy leaving my body for the count of 5 an I do this 5 times but it's very inportant to visualise the ground under your feet and your grounded from your waist down to it. Then I instruct my mind to only focus on one very happy funny memory even if its something only that happened as a funny joke or conversation just get your mind preoccupied focusing on that happy memory or event even if it is for 25 seconds.
I finished up my notes on my pc and then I searched straight away on YouTube for how to reprogram your brain from pain and stress.
I would watch the full video with my hearing aids for my chronic tennits out an ear phones on an put my consintration on solely on the video. Then when it's over I turn back to my pc and write fr what I got from it what I feel is a brilliant idea and how it may help me.
This has helped me in the sence of my Seizures have stopped the last week and I have had no falls.
I'm not walking like I have had one to many down the pub though I don't drink and I can put a sentence together some times without my speech being so slur.
I also had taken even though it gives me a headache, the CBD oil with the pepeement and coconut oil at night when I'm going to bed.
I'm still having off days where my legs just weigh a ton and I dare not carry on walking, even with my rollavator stroler. My pain threshold is around 7/10 but hey its early days and it's so much better than 12/10 like it has been.
I hope this puts your mind at ease that NFD is actually very real its the pain signal points in the brain spreading and stopping the signals from being received from the brain to function properly .
Once we look after ourselves and wellbeing then we can focus on our health an take hold of this horrible health condition.
My friendship thoughts and prayers are with you and your loved ones as they too be very frightened with what your going through. The only thing that they can do if you want to tell them is that you avoid stress and worry as much as possible so you can get into a pattern of controlling your flair ups.
Thank you for taking the time to reply and for your kind thoughts.
I'm glad you seem to finally have found something that helps with your condition.
I myself have had many falls (mostly without injury) however have broken some ribs and fractured a vertebrae on one occasion.
Walking for me, despite the pain and heaviness both of which invisible therefore of no apparent interest to health care professionals is not my main concern in fact I average around 12000 steps a day.
Hence the reason I currently only receive carer's allowance.
I won't pretend it's easy but at least I'm still able to to care for my wife.
It's when I stop or stand in shop queues that's when my tremor puts in an appearance even getting me banned from my local sainsbury 's as I look like some kind of junkie I suppose but I'm not about to explain myself to everyone I meet or wear a badge or something.
Also my left hand simply doesn't work properly another symptom largely ignored by the neurologist.
On the plus side I have recently completed an 8 week mindfulness course which to my complete surprise I found to be extremely useful and I'm no longer on antidepressants although I never thought I was depressed anyway but understand why any gp would reach that conclusion given my shaking carcase sitting in front of them.
My neuropsychologist who taught the mindfulness class has asked me to see a specialist in London but that will be quite some time to wait.
I suppose I am probably still in doubt about the fnd diagnosis but will just have to go with the flow.
Hi dear friend. 😞 How dare a supper Market bar you from a shop without probable cause, the cheek of them. You could have them for that you know. It's out rages. 😟😧😡😠 That carry on is just decriminalisation.
The gas thing is of there was someone totally under the influence of drugs or alcohol they probably would not approach them. 😡😠
Anyway rant over hahaha 😂😂 sorry but it boils my widdle when people judge an dont know the facts.
As to what you mentioned about mindfulness meditation that's exactly what I mean by distracting your mind. Your therapist was totally spot on and yes its the story of everyone life as to a long waiting list to see some form or another specialist. 🙄🙄🙄. Here is the name of a few mindfulness videos on YouTube that can help assist you and your wife with pain stress an discomfort. Jason stephenson pain an anxiety guided meditation. Sleep medication . Meditation vacation. Michael seley guided meditation. Relax me on line. Free Glenn Harrold guided meditation.
Just type any of these into search on YouTube and you will get them. Also if you put in chair exercises for your wife if she's unable to do the walks with you or days you can't do the walking. These too will help. I also have a post up and it may help you too an your wife. I wish both of you a wonderful new week ahead, may it be filled with wellbeing comfort and light for you both.
Being banned from a supermarket is the least of my problems.
I've been in a shop waiting to be served when the voices behind me start singing 🎶do the shake and vac🎵.
So i turn round, straighten up and ask, what size of boots do your testicles take? (well maybe in slightly rougher language than that) and then all hell breaks loose.
I now wear headphones to avoid hearing any more crap.
Anyway its looking like another sleepless night for me despite my new prescription of zopiclone which merely seems to make me more restless.
Looks like I'll be taking a late night walk to mcdonalds for a coffee again.
Hi Tommy 🤗 I'm really delighted for you. It's horrible when you have that kind of sensation going on disturbing your sleep. Our bodies don't heal in day time sleep properly only in the night time. Because day time energies our bodies even if the sun can't be seen and night time our bodies rejuvenate and heal in the moon atmosphere that's why we have sun and moon it's not only for day light and darkness. 🌞🌅🌌🌉
I hope you will feel much better soon. Try leaving your bedding folded down to the end of your bed when you get up in the morning to air while you're both up during the day.
This way it will have the bed cool and fresh for you both and will help with a good night sleep 😊😴😴😴😊😊🤗🤗
I won't be on here Tommy for a little while, I'm going for vascular surgery on Tuesday so it be probably the end the week before I be in any space to pop on to reply or message anyone.
So ill wish you an your amazing wife a wonder new week and may it be filled with health and wellbeing for you both. 🤗🤗🤗🤗😇😇🙏🙏 Be well and keep strong. Ce 🤗🤗🤗
No I don't hear things (well not that I'm aware of) but act out dreams, lashing out, shouting etc.
Recently I found myself on the floor at the end of the bed after what I thought was escaping from a tunnel which both myself and my wife found hilarious so it's not all doom & gloom.
I've also punched my disabled wife during some of these episodes which is a huge worry.
I too have trouble with typing letters typically being one or two letters ahead of myself if that makes sense.
My handwriting is now awful and so tiny.
I suppose I'm fortunate to live in the digital age despite having to type slowly and check twice.
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