Think I am getting closer to diagnoses, after 4 odd years, the two suggested possibilities on the cards are Dysautomomia or FND. Tests will try and rule if it's the function of my nervous system, (as far as I know in Dysautonomia it shows signs of damage while as FND it's the 'wiring', please feel free to correct this statement).
Anyway, i've read what little information I can find on this, is there a list of patients symptoms? I've read the ones in articles but seem limited, it's good information but i'm sure there are others seen in this condition?
I have most the symptoms but from I can't find my main symptom. This I can only explain as 'wired'/constant 'stimulation', 1000 cups of coffee wouldn't come close, rarely sleep, etc. Does anyone else have or had this? - This comes with dilation of pupils, adrenaline etc, an example of how easily I can go from feeling slightly stimulated to completely is even a conversation.
(tried 15 medications, bipolar route, thyroid etc and only thing that stops this stimulation is Benzodiazepines, heavier things don't help at all, Lithium, Quietapine, etc)
(ADD picture? well i could show you how dilated my eyes get when i am stimulated but that's just scary!)
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WickedGame
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No wonder you are in the lap of confusion! It is an unfortunately large lap which many of us share!
You rightly observe that FND is a fault in the wiring. The clever links between the amygdula/hypocamphus in the brain and the CNS get disconnected or misplaced. They are still there but the body is sending all the right signals but the messages get garbled in the process of communication. Like the game of Chinese whispers. Treatment may have as much to do with re-establishing these links as anything else. Like a traffic jam. You may have to find a way to get the vehicles through the back lanes before the main road is re-opened.
Also, I have been bipolar for about 50 years, on lithium from 1989 to 2016 (when it was a contributing factor/cause of my neurological trauma - a post-op chemical clash that left we with severe myoclonus (tremors) and (I discovered 8 months later) FND. After the chemical clash I was taken off lithium and put on epilim chrono (a med for epilepsy which also helps with mood control, which in my case had and has been stable for in excess of at least 5 years).
So post-lithium, and probably also as a facet of my FND, I noticed that I had begun to have significant changes in emotional matters. I started to feel emotions, some for the first time in my life. It was as if I had been blind, had my sight restored and then asked to identify colours, I had nothing to judge them by, not even words to describe some of the feelings. It was (and continues to be) somewhat of a challenge.
With the emotional surge came a large (!) element of hypersensitivity. I cannot stand noise (particularly being shouted at, or angry people). I may go from relaxed (slightly stimulated, as you eloquently put it) and generally amiable and laid back to being in a full-on panic attack/pseudo-epileptic seizure within seconds. This transformation is usually accompanied by a failure in my ability to stand (that is, I experience a fall) and tends to render me kicking and thrashing about with my arms, wanting and wishing someone, anyone, to come and comfort me and to reassure me that 'it will be OK'.
Incidentally, as a method to aid recovery, I have found that having "calm down" shouted at me repeatedly, being ignored when I call, in desparation, for help, verbal or physical assault and having cold water thrown over me do not help to relieve the symptoms. All have been tried, some more frequently than others. None works!
I can assure you that, my having experienced the full range of symptoms on offer with bipolar disorder, FND is quite a different experience. It sucks! Well, both of them do, but particularly FND because of the 'general' (non-neurologists, for example) lack of understanding of the causes/triggers and the absence of a single, or range of, universal cure.
Crushing fatigue is another of my 'issues'. I do get very tired. Any physical activity (such as a very short stroll around the garden) renders me helpless, particularly to walk, unaided or with the old stand-by, furniture or walls. I cannot begin to number the films of which I saw only the first ten or fifteen minutes before dozing off, on the sofa! But then, I do not sleep too well either! Sometimes I am lucky and get 6 or 7 hours. Often less, and much of it is disturbed. It could be only 3 or 4 and then I face an uncertain day with the sensitivity and mobility problems.
When trying to sleep, I may tend to drift off but then, later, I become somewhet aware of my surroundings (it varies, from vague impressions to knowing that I am awake or that I am just on the cusp of consciousness) but in reality I am not fully conscious. This aspect usually starts from the early hours of the morning.
My legs, with the myoclonus, are sensitive to touch and have a tendency to kick out, sometimes for a relatively long period, before I fall asleep. To say that one becomes used to this would simply be untrue. I accept and try to carry on without imposing a symptom on my supine wife in bed beside me.
So FND has a wide range of symptoms. I would rank my variable and unpredictable ability to walk as a primary sign. The emotional sensitivity is both a cause and an effect. I get anxious, a neuro-melt occurs, I imitate a jellyfish or chew on the carpet for a while, then I come down to earth (or wherever) and carry on.
So, good luck finding the answer. I can recomment neurosymptoms.org as a source of information about FND, particularly the very excellent explanations on the FNDhope.org site but also the observations in the posts, on this site.
Yeah, these types of things seem hard to get to the bottom of.
Your explanation makes sense. Mine would have come from stress for sure.
Very interesting, I was only on Lithium for 3 months and had made no difference to my mood or 'wiredness'. I do feel the emotional numbness you talk about, however.
Hypersensitivity is kinda like I am experiencing. Go from talking to someone to completely stimulated more than anything before this I could imagine.
I am reading your story, just picking out little bits I relate to, 7 hours would be amazing but without tablets I don't touch the bed for days, I am soooo stimulated constantly, just goes from medium to severe and unlike an adrenaline attack which is suppose to come down within an hour, something can trigger my 'wired' and it will last days, I don't feel drowsy.
Thanks so much for your detailed response, sounds like you have a lot to deal with, I feel for you, wish you all the best
On days when I get tremors and seizures, I definitely can relate to the feeling of having too much coffee, it's like I can feel the electricity bursting on the left side of my body and I don't get relief until I get a seizure. The short time I took seizure meds (one week) I started feeling the seizures get stuck, and it was an awful feeling, like needing to throw up but you can't.
The extent that you're feeling this, I haven't heard anyone else describe that sensation like that. It sounds pretty terrible. Would you consider THC or CBD? I hope you get answers soon.
See I don't get seizure or black outs, that's why I don't really see this being me, it's in the right area.
Yeah no one so far does, got a atomic specialist in 3 months, just got to hope she has, 3 years searching and no one feels as stimulated as me, it sure is strange.
THC and CBD - Tried, don't help, make the adrenaline worse THC, CBD doesn't do anything, nor does 15 other medications, only thing that can stop this is high amounts of Benzo's which I get is not good, my doctor is gonna flip if I mention that word ever again, it's hard being up for days though.. I was mainly seeing if this was something people get, but doesn't seem to fit. Thanks for your reply, wish you all the best
I am on 40mg x 2 per day Propranolol only regular medication I am on.
Nothing can bring this stimulant down other than Xanax/Clonazepam (Valium kinda, but too weak for this)... no one can put it together, seen 8 psychiatrists now and a lot of other specialists, no one has been able to piece it together.
I just hope this autonomic neurologist I see in 3 months time as it's the last idea I have. Seen a normal Neurologist, Endos, Psychiatrists who are all confident it's not their area (well the Neurologist just didn't know)
If you haven't seen one yet, you may want to see an endocrinologist to make sure that you don't have a tumor that is producing too much hormone. Your condition may be FND, but you would be the first person with FND to describe this feeling of such hyperstimulation that I have come across. I haven't read any FND literature describing your condition. It could be FND in that in FND, there seems to be dissociation between parts of the brain, and the neuronal signal strengths are often flawed, including neuronal signal strengths to consciousness. With my FND, I have often felt that my consciousness was quite awake when my eyelids, face, body and neck were showing signs of being asleep.
Yeah FND doesn't seem to have this hyper stimulation, especially at my level. I've seen an Endocrinologist 4 times and another 1 private, they promise me that T3+T4 and the pages of bloods and 24 hour samples are normal for anything to be up, prolactin tumour was talked about but ruled out with MRI's etc.. Thanks for your help
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