Over the past two months, I have been hammered by so many symptoms that I don’t know how much more I can take. I feel as though my FND has attacked me in the way a huge continuous rush of raging water slams into a dam has been so compromised that the whole thing will break loose any day. Every aspect of my being is affected. Physical, cognitive, vision, speech, gait, memory, and new to the party, perception. I have “seen” the refrigerator undulate, been lost in a grocery store, have no idea what I’m doing, and confused far beyond the regular brain fog issue. I can’t figure out what is real & accurate versus perceived & distorted.
Any suggestions? Any thoughts? Should I contact my neurologist? Can anything be done to help?
HenriettaPoultryfoot
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HenriettaPoultryfoot
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I'm sorry that you are going through such scary times, stress can increase symptoms, it seems a viscous cycle, downward spiral. Are you writing down your symptoms, so if you do get to see someone, it's easier to recall. Plus writing them down, you might see a pattern, what increases your anxiety. I've been trying to cut down my sugar in my diet, has an effect on dopamine. Dopamine gets low in those with FND and Parkinsons. I hope you find some solution. Take care. Moni
I have been heeding your advice about keeping a written log. Definitely, a pattern is noticed. My big triggers appear to be: frustration, fatigue, pain. These things are in constant battle with my expectations of myself. Basically, I need to chill a bit and be less self-demanding. I need to put ME first (not my style historically).
I am in touch with my neurologist. We are working on a plan of attack.
I do hope that your neurologist has experience in FND, or at least knows which direction to go. I'm finding it difficult off Levodopa, which cut symptoms down for a short time. Trying to get focused again. I sometimes get up and find my up and go has already gone. So I take the day off. I'm a compulsive cleaner. Lol. Take care. Moni
Oh yes! My neurologist is very well versed in FND. He works out of the Movement disorders clinic within the Neurology Dept of Johns Hopkins Hospital in Baltimore MD. USA. Cutting edge stuff. I am blessed to be within reasonable driving distance to Baltimore.
So happy for you. I'm in regional Australia where there is little to no facilities, even neurologist has to fly in every so often. But hopefully as more is learned, it will filter through. Please let me know what they suggest to help, it might benefit me and others. Take care. Moni
Absolutely, I will share all pertinent findings for any treatments, therapies, medicines, etc. We all need each other to travel through our FND sojourn.
I am sorry to hear you are in the middle of a bad symptom flare up. It wouldn't hurt to reach out to your neurologist if they have instructed you to do so. If you are able to have a look back at the last couple of months, particularly with a friend or if you have a therapist, and perhaps identify any triggers that you may have not realised were exacerbating your symptoms. Stress and anxiety can also make things so much worse along with medication changes. I hope you are feeling less overwhelmed shortly.
Thank you for your reply. Upon reflection, there have been some changes in medication (not for FND though) and a good deal of stress since January. Wow! I should have been able to notice. I didn’t put it together. The whole “Can’t see the forest for the trees” situation.
Your response demonstrates the great value of this group. Thank you so much. I wish you a good day.
Hi definitely sounds like stress and panic raising your adrenaline levels to a point of `Flight, Freeze or Fight' which is the humans go-to survival mode.
Mostly it's a case of finding what causes the worst reactions or triggers the worst symptoms, then back tracking about how you can adjust your thoughts/activities to lessen the Adrenaline overload.
Know that having FND means you cannot control when the Survival Mode kicks in (fairly random based on neurochemical ratios fluctuating at that precise time), all you can do is limit the duration and damage!
Often not mentioned and I think crucial to managing FND is understanding the feeling that you are unable to Flee or Fight from a stressful situation. This lack of natural safety options puts us into a brain overload/confusion mode much quicker and in my case, causes the function/coordination process to crash or Freeze!
There are many free online audio guided Meditation & Stress Reducing Apps out there and some may work for you (only if practised regularly, so you are more prepared mentally in future stressful situations).
However, what works for me (rather than Apps) is Acceptance Commitment Therapy (ACT), you have a bad/stressful thought or physical action failure, you accept that it has happened and analyse it for a moment, pause what you are doing - then move the brain on, try again the action. If that does not help, I resort to few slow deep breaths and mind distraction techniques like focussing on mundane tasks that need doing etc.
Oddly, I have found for me, that slowing down the pace of thinking and activity does actually speed up the recovery from an extreme FND episode?
Pace yourself, do not let others pressure you to go at their speed (they can wait!)- work out what is right for you and stick to it!
Also know that there are often other options of medication out there, so if something does not seem to work for you or indeed makes things much worse (we forget that medications can cause worse symptoms instead of making things better) - then try something else!
Thank you for your reply. Your message makes very good sense, and most likely is quite valid in my situation.
I have been extra stressed for the past few months. My need for support from family has increased. The realization that this need isn’t and probably be won’t be met is distressing. No ill-will is meant by family. It’s all strange for them too. Historically I was the mover & shaker of the family. Now that role is semi-vacant.
I truly appreciate your response. It’s interesting that strangers have been more supportive than family.
My daughter has severe crps and FND and is wheelchair bound with all of your symptoms. We've recently explored medical cannabis because her quality of life was so poor. It has helped lessen the severity and frequency of the symptoms. It hasn't positively changed her ability to stand or walk, but everything else has slightly improved and we've tried so many different treatments. I'd recommend if it's available in your location.
For those who offered insight and advice regarding my post of about a month ago, THANK YOU! I have been in touch with my doc.
About one week ago, I underwent a marathon appointment. Back in January, my neurologist referred me to a neuropsychologist to have a Neuropsychological Assessment done. That beast of a test was, all told, 6.25 hrs long!!! I am still trying to recover from it. The purpose is to specifically outline my cognitive deficits. With the findings, the hope is to have an individualized form of therapy.
I should have the results by May 1st. I certainly hope something positive can happen. I’ll let the curious know.
Take care folks. Spring is underway in my “neck of the woods.” I rejoice in that.
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