Strange new symptoms

[Angel73star]

With on going eye and sensory changes...

(I've had long standing muscle and nerve problems also senses and touch sounds smells are gradually sensative .. 2years minimum... finally dx November 2016 FND)

Started getting strange eye symptoms last week like old 70s video clip.

Last night I got up to have my partner turn on the flurolight without my knowledge and the starter is slow and it scared me I almost went into shock and froze and then like had what was like a little convulsions and started crying badly. Was horrible, I couldn't control it. Like it scared the shit out of me or something.

I've also noticed the triple vision or hallucinogenic type vision when I wake or walk into a dark room like another dimension.

Another thing is a bit of alice in wonderland stuff and depth perception.

Also in traffic if I'm I'm not driving things like cars and poles seem closer luke they're going to hit us and I am often starting to react and annoy my partner because I'm overactive now which is not me.

My body is not sensative or reactive though in other ways like smiling or happy though I enjoy things but I'm blank.

What is going on?!!!

Please help this is really starting to change my life. I've not been able to to go work. Hardly driving. Affecting personal life and now affecting state of mind more than I thought rather than just my muscles and nerves... and the nureologist said last week he's decided he's not seeing me any more?? Would love to know what the heck is happening with the new symptoms if you get these please share how you cope...and treatment etc and what to do?

Haven't worked since December 2016 😣

Thanks.

[Lawley3]

Hi

I completely understand what you are saying, I've had fnd for 3 years almost with many symptoms but I'm starting to notice now more problems with my eyes. I get dreadful double vision, pictures off the TV or bright lights seem to stay in my vision even after I have moved away from it. Also have problems with eye floaters getting worse. When my other symptoms are bad the eye problems are worse but on ok days I notice it less. I also have problems with depth perception and the dark just like you. X

[Angel73star in reply to Lawley3]

It's so weird. I don't get it. My eyes have been tested and ask the tests are ok but my reactions are not.

[Ailsaw]

It is a horrendous condition my whole life has been ripped apart. Lights are a nightmare for me even with shades on. I haven't been able to watch tv since August 2016. I'm hoping to join trials with Jon stone in February . Doctors haven't a clue about this ,there needs to be a lot more research carried out the different symptoms and how they can chop and change are so frightening , I have horrible seizures to and can't be on my own . Best wishes to you , your not alone x

[Angel73star in reply to Ailsaw]

Gosh, that's terrible. I hope I don't have them getting so much worse. I hope you get help. That's really tough. I hope you have a a lot of support? Do they really know what actually causes it? I had a surgery and then everything started going wrong.?When they say psychological I think it's not right as I'm good at dealing with emotions and swapping out bad thought for good etc and I've been through bad stuff but lots of people do and we get on with it. Can't be blamed for things they can't diagnose? I don't know in still not sold on it but I don't fully understand it. But I do get what is happening is affecting my mind or senses and thats not from events or things but but bodys signals bring very whacked? And obviously worsening and not showing on tests?

Did notice when I had a diet pill metermine I had a bit of normality... that work affect the central nervous system from what I've read... mentioned to my nureo by he ignored me. They're very pricey but if studied could be used as means as a treatment if you see dr stone could you mention it. Maybe worth a study. Might not work in others or again or need other stuff but I could feel something help.

[Ailsaw in reply to Angel73star]

It will certainly be very interesting to take part in the clinical trials as I wouldn't know where to start to try and fix this but at least it's a little bit of hope to hold on too. Plenty of rest seems to help frustrating I know but you need to look after yourself and pace yourself accordingly.

I am going to keep a diary of any treatment I receive and hopefully be able to share some useful information.

Best wishes

Ailsa

[Angel73star]

That's a diet dill

[Hidden]

Angel73star.

Your post along with the replies confirm for me how important this site is to those of us who suffer from these symptoms.

Everything said and every effort to cope deserves all our respect. In my 23rd year of going through this stuff. It has now depleted my systems. Regarding nerves and muscle tissue, please note that I developed chronic and severe polyneuropathy which is another way of saying that I have system wide permanent nerve damage which in turn causes muscle wasting as working nerves are required for muscle contractions. I hope none of you ever experience this damage. I have had four EMG tests, the last by a neurologist who practiced at Cleveland Clinic in U.S. who noted my results were of a highly unusual and complex nature. He could not explain the cause. The nerves that do work experience many of the sensory symptoms talked about here so that part of the torment continues.

Never accept what you are told by a doctor if you do not believe it as well. They have to do better to help us as. Community. I keep searching and reading research across the neurology spectrum.

I wish you all a comfortable restful Sunday.

Dan

[EnglishIslander FND Hope Volunteer]

I would suggest wearing both dark glasses and ear plugs whilst outside or in public places. FNDERS seem to have damaged "filters" in their audio/sensory brain areas that normally we sort into areas of "noted and filed" but instead are passed into our "be aware" sectors and this overloads us. The brain then overreact and causes the symptoms we suffer. By reducing the volume of sound and light we can process a little better. Sirens and other sharp sounds were instantaneous seizure triggers for me and to some extent some till are, but I've rebuilt my files over the last 3 years and can now deal with most incidences

Also worth reading the 2 main websites for FND. neurosymptoms.org and fndhope.org

[Angel73star in reply to EnglishIslander]

Thank you I've bought new prescription sunglasses for day time and have new script for day wear. I do find though. My vision can go really blurry even with the glasses. Sounds and too much going most definitely makes it worse. Around home I'm not super but at the shops I'm in torment. Nurealgia in my face and neck and arms gent like being strangled and having stuff on me and sharp stabbing etc while trying to walk and look normal with my partner. So difficult. He didn't insist on me going out but I wanted to try. But also was worried that it was so intense and spontaneous that I could exen have a sezuire (I've not had a big event in public and don't want to!) I said to my partner if I feel too much worse I'd sit in bathroom stall for a while and he said not to.

I've worked in disabilty, but to go from being working ( though only just a month a go) to being this and so unpredictable it's a pain. I don't know what to say to work. I am avoiding driving. Stuck at home. Need to go swimming for muscles.

Am trying to swap meds around a bit to see if thr topamax dosage was too high or if splitting was a good or bad idea. Stated being migranes again when dropped it down. And so I do need the dose but didn't have the weird light show last night but I did take 10mg of endep recommended by gp to sleep... but did get migrane..so was that the lack of topamax or the endep? I took a topamaxthis morning and panadol and the lyrica but headache remained most of day and feel yuk as usual. Droppy eyes is typical the last month. Yesterday nurealgia in face pretty bad. Today behind eyes usually migrane spots.

So tonight 2 topamax, 1 endep, 2 lyrica. Won't have morning dose of topamax just take panadol and 1 lyrica and see what that plan does. If that still brings head aches I'll drop the endep... deal with strange symptoms and and work in something else...

[VivienneWaterworth]

If you are seeing Dr Jon Stone in Edinburgh, then you are seeing one of the best neurologists in the world for FND. He also runs research projects and has set up the website neurosymptoms.org

If you want to be involved in research, you can register at fndhope.org - they have a register of people worldwide who are willing to take part in research into FND. This whole concept of doing research on FND as a neurological problem is still very much in it's infancy.

Until only 2 to 3 years ago, it was only considered a mental health problem and all research into this disorder was done by psychologists and psychiatrists...who really only found one solution to this problem - CBT, retraining the brain to think differently. The reason this seems to work, to my way of thinking, is that FND problems occur when electrical impulses (thoughts) seem to follow the wrong highways through the brain, and get highjacked to the wrong areas e.g. a thought to move often gets highjacked in our brains and gets sent to the emotional centres of the brain, perhaps causing us to cry for no reason, and emotional thoughts often get highjacked into the movement areas, causing perhaps seizures and other uncontrolled movements.

The solution seems to be to retrain the electrical impulses to go a different way around the brain so that it ends up where it's supposed to end up, without getting highjacked. Effectively fixing the software problem in the brain.

It seems, as Mr English Islander (Duncan) has said, our filters seem to be overloaded for some reason. Many of us have very over-reactive startle reflexes, so any sudden noise or light or touch can set us off. My ordinary reflexes are either virtually dead or way too over-reactive and the reflexes can travel up and down my body for up to 5 minutes, making any further testing of reflexes difficult.

Ok, do you take Magnesium and Vitamin B12 supplements? These two, plus a few others (e.g. Folate) seem to have the biggest positive effect on FND symptoms because they are 'food' for nerves and muscles. For some reason, we seem to require a lot more than the mid-point of the normal range of these and other vitamins and minerals. My Vitamin B12 levels are in the normal range, but if I forget to take it for a few days, I start getting floaters in my vision, especially first thing in the morning when I'm still tired and half asleep. This confuses my doctor because I do have the enzyme that creates B12 in the body so I don't have pernicious anaemia (chronic B12 shortage that can only be reversed by injections and to a less extent by tablets), and I have a bad reaction to B12 injections.

[Angel73star]

Thank you both. Very informative xx