Luckily they managed to get the intensive six week therapy which I think should be offered to all newly diagnosed sufferers, so the habits don't become ingrained.
Here is a couple of extracts from the site:
"I was passed from specialist to specialist until eventually I spoke to a neurologist who asked me, as we were talking, to tap my thumb and middle finger together on my left hand. As I did so, the tremor in my right arm stopped."
"I wanted to tell my brain to stop but it wouldn’t listen. But as I began to learn, I could distract it. Tapping out a pattern with my fingers or toes, as the neurologist had shown me, shifted my brain’s focus away from my tremor or seizure and stopped the symptoms."
"Research has found a connection between FND and the stress hormone cortisol. Whenever I was stressed, tired or anxious, my brain went into autopilot and I would have a seizure. This loss of control of my body was terrifying and the fear caused my body to produce more cortisol, creating a debilitating loop."
I actually recall asking for cortisol level check but there was deemed no medical reason (after reading an article).
"It is common for FND patients to exist in a cycle of boom and bust. On the days where their symptoms feel more manageable they do too much, leading to a flare-up the following day and a negative impact on both the individual’s mood (following the burst of cortisol) and their perception of their ability to live a 'normal' life. The physiotherapy and occupational therapy worked on a graded exercise plan so that each day a patient would do slightly more than on a typical 'bad' day and slightly less than on a 'good' day, breaking the cycle to create steady improvement."
"Patients are taught ways to manage their symptoms, both physically and psychologically. Alongside learning more about tapping techniques to distract my brain, I was taught to lean into the involuntary movement. If my arm was trembling, I would try and make that tremor bigger and more pronounced until I could control the movement of it, then slowly reduce the speed until stopping it. I learned that the seizures were linked to anxiety or stress triggers and was taught breathing exercises and meditation techniques to calm my nervous system and reduce cortisol production. Similarly, CBT worked to manage thoughts and behaviours that could be marring my recovery. "
Written by
Lady4
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That is interesting, and very useful but I am unsure I have the 'standard' version of the tremors/shakes...never having had a FTF consultation with the neuro psychiatrist! My shakes do not last for long, but involve whole body movements and unlike, as mentioned above, are worse when the body is relaxed ( = less cortisol ?) e.g after deep breaths, after a pleasant phone conversation, after some flow roping, sitting down not doing much .. the shaking seems to be a release mechanism, so my aim has to be to stop the initial inner body tension. Unlike the video of a tremoring person on the St George's site, I can override mine with intentional movement and don't have up and down energy patterns.
All this just points to the fact that each FND patient needs thorough individual assessment from an experienced practitioner...something regrettably in short supply. The info will help many, so thanks for that.
Thank you for redirecting the conversation toward some positivity. FND is difficult and exhausting to manage, even when one has a handle on it. Sharing what your neurologist spoke of with the finger tapping is good information in that it led to the idea of distracting and refocusing the brain. I am certain many readers can benefit from it.
Like you, discovering how paramount pacing my life is has allowed me to manage my symptoms much better. Literally, I put rest periods and days in my calendar with the same importance as booking a doctor appointment or a social event. Only one event of any kind can happen in a day. If a big event is on the horizon, say my grandson’s birthday party, I book at least one rest day before and after the day of the event. This pacing has allowed me the ability to do a moderate amount of things.
No matter what, I have some crappy days, weeks, and even a string of a few months. However, there are more periods of manageable days and weeks since I have learned to consciously pace.
Listening to my body rather than fighting to work through the various motor symptoms, pain and exhaustion, is serving me well.
Living with FND has been the hardest thing I have ever tackled. I have had a 4 year learning curve to get where I am today. I have a lot more learning to do. I am being proactive. I am discovering new and improved methods and information.
So I thank you again, Lady4, for your post. I hope you have a good day!
Just gunna pop in with a reminder that this doesn't work for every FND patient, and if it doesn't - it's not your fault 💞FND is a Neurological condition that we can't directly control - we can only control and train triggers. If the triggers are based on your body temp, you can only learn how to spot it not how to stop it via thought.
Managing the condition is the goal, and that can vary greatly between us.
Absolutely what works for one might not work for another. If you can detect your temp rising, try a cooling towel.
I am not a fan of CBT alone, it can help as part of a multi-disciplinary approach for reversing negative thought patterns but showing your brain you have got it, is more powerful (taking back control).
I refuse to believe I’m at the best I can be - HenriettPoultryfoot summed it up so well for me - trial and error can often lead to improvement. We just have to learn, learn, then learn some more about what works for each of us.
These types of posts are what keep me coming back to this site!
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