Hi folks. Has anyone with dissociative seizures found that their eyesight is being affected? Up until 2 years ago my eyesight was fine. Then I suddenly needed glasses for reading. Nothing too serious and I just put it down to my age. But now I am beginning to feel that the detoriation is faster that just simple aging. It's still not horrific and only when I read but even the small letters are causing me to get out the magnofaction glass.
Sorry about the spelling. I had a really bad seizure yesterday and am finding my usual word recall/spelling difficulties after the seizure. But the word recall and spelling are not only after a seizure now. . Those symptoms are now with me permentally. Are people finding that too?
Cheers
Lou
PS : managed a 6.5 mile run today. I'm not going to give up my running. I train on my own (running club wouldn't have me back). I ended up in hospital recently because I had a seizure while running and injured my head and face. But I'm trying to keep to a normal life as much as I can. I love running and until the seizures started have entered many competitions and have beat people half my age. So hey run, fall down, run, etc. Won't let it scare me - it just bloody hurts. But then I have quite a few tattoos so what the hell to falling on my head. I live about 25 miles from Edinburgh and am heading down to Reading in August to get another tattoo down by a real expert in the type of tattooing I want - he's won loads of competitions inside and outside the UK. He reckons that my tattoo will take 8 hours. Beat that FND.
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Good for you , I was lucky enough to see Jon stone yesterday and will be taking part in trials to study these crazy seizures. I too have poorer eyesight and sensitivity to light is awful. We are hoping that slow graded exposure will help my brain readjust but it will mean some discomfort to start . Keep up the running but be aware that over doing it can make things worse , you still need a lot of rest but your determination will help you beat this. Best wishes x ailsa
Great you've seen Jon Stone. He is the best in Scotland. I understand the seizures are upsetting painful & exhausting. Bless you xx You are being seeing by one of the best he lectures other neurologists about FND. I'm wishing you a speedy recovery and your in good hands. A day at a time sometimes a minute at a time. Keep us updated please when you have strength.
My sight has got worse and it comes and goes especially after a seizure or a virus or fever.
Keep running your doing really well.
Well done 👍🏻
A xx
• in reply to
Sunshineali.
I think you just said volumes about the interaction of other forces such as virus and fever with FND to create real chaos in parts of our nervous system of which sight is a critical part.
Thank you.
Dan / Seattle
• in reply to
Hi Dan,
I managed to get my notes translated from Spanish to English I have had 2 strokes in there neurologist reports. They also functional Romberg test with a fall to either side. I'm not sure what that means. Also during episodes of seizures "myoclonus type movements in both arms back in 2012. But epilepsy had been ruled out as I had a VEEG. Lots of medical terms. Extraxial spaces and basal cisterns and morphology of slightly abnormal size for my age.
Sorry everyone I have no clue what that means as I was ill and I can't absorb some information especially big words.
They did keep putting me on anti seizure medication however my VEEG showed I had sezuires but they are non epileptic. The only medication I can tolerate for seizures is tegretol.
Best wishes to everyone today and I hope you all have the best day possible
Xx
• in reply to
Sunshineali.
I pose questions to your post not to get you to have to respond to me but just to give you food for thought.
I am not a doctor, do not practice medicine, do not give advice and do not even know what a moderator is!
First.
The reported strokes. You might want to know where in brain they occurred. If found in thalamic or more interestingly the sub thalamic nucleus region then I want to buy the hot tea and have a conversation. Also, would want to know if classified as TIA (transient episode).
In either case, was there any concurrent tests looking for glucose and electrolyte abnormalities. Again, only things for you to consider. No need to use energy to respond.
Second.
To me, Romberg is looking at the proper functioning of the dorsal column of the spinal cord. This is the posterior aspect of the cord, my understanding, and deals in sensory information as opposed to motor control.
Romberg might be done with both eyes open and then again with eyes closed. You might consider this when evaluating when you fell towards the sides. I understand they can have different meanings. The test is supposed to measure sensory function such as knowing what position the body is in, and if the position of the head and visual function compensates for sensory defects.
Third.
I have unbelievable myclonic jerks. Myoclonus is sudden and often extreme movements of the limbs and generally have no repetitive pattern. I wear a sign when I am out that suggests people stay back 20 feet because my movements come without warning and can cause full extension of my arms in any direction.
Fourth.
My doctors let me use high dose (for me) keppra for my complex movement disorder and non epileptic seizures. That was a compromise to get me off valproic acid which was the best suppression drug I ever took but by far and away the most risky and damaging. Dangerous for ladies.
Comments on extra axial spaces and abnormal basal cisterns are way beyond my reach although you now have my curiosity peaked.
Medicine is way too complicated and tests are subject to wide interpretation. Everything has to get put into context of how is patient doing today. This is what drives me insane is that the doctors here do no follow up. The body always tries to recover and compensate for neurologic insults. Sometimes, it does so better than others.
I look out over the long term and measure the toll as the defects, no matter the cause, return time and again and I find that I never quite get back to the level of function I had before each attack occurred.
I encourage you to absorb what knowledge you can about the human nervous system and how it may work. It has helped me deal with the past and better prepares me for what may come in the future.
I could not close without saying how important you are as a person and how we stand beside you in this fight. I know you are strong because you keep reaching out yet you always put others ahead of yourself.
We are the players in this game and we will get a shot on goal. Hopefully, the shot we take will be on the mark.
Dan / Seattle
• in reply to
Thanks for the information your a great help! I do need some guidance as to what I need to ask the neurologist etc. So now I have something to go on. Plus the added extra of my notes from Spain. My neurologist there was good although they changed between 2012 & 2016.
Thanks for your kind words Dan. I hope you have a peaceful pain free day. Well I pray anyway (healing hugs) to you and everyone who may read this or drop in by! 😊
Hi
I have trouble with my eye sight, changing frequently. But I am in reverse my eye sight improved after a break from work. My sight changes slot depending on the FND. Good luck with the running I can't do it, leg's wouldn't take it, walking OK. My FND does change a lot, starting to go through bad patch march to October, When garlic comes into season. A trigger to mine.
Colin - Isle of Wight
• in reply to
Hi robinstigger,
I hope your having a restful day and better eyesight. My eyesight also changes a lot especially after an episode. You mention garlic does that cause your eyesight or everything else in your nervous system to change? I'm curious as I also have ulcerative colitis so garlic & onions for me are a no no!
I hope your having a lovely day on the beautiful Isle of Wight.
Ali 😊
• in reply to
Hi Sunshineali
Garlic is my main trigger to my attacks, but all the garlic family is, onions,leeks, chives etc.
It effects my eyesight,chest pain, pain in legs, shoulders, back, hips, left and some reason left hand middle finger feels disjointed.
I am on pregabalin for pain only 75mg twice a day. Has I am a carer and need to be in sound mind and tollorate certain amount of pain.
Colin- isle of Wight
• in reply to
Hi robinstigger,
Bless your caring for others!
I understand you you need to be clear headed. I do to with 4 children. But I do limit my driving. So is the pregabalin for sezuires or nerve damage?
I can only tolerate tegretol out of the anti epileptic medication. Keppra send me round the twist.
Does the pregabalin help with your pain?
I hope your sight settles down must be difficult for you working and also trying to focus when your sight is playing up.
Ali 😊
• in reply to
Hi Sunshineali
Pregabalin is the only one that doesn't affect my mood, I can't remember what they were off hand, but couple of them help with pain but gave me really bad mood swings, working is a bit of struggle still, which I reduced from full time to part-time, my job is optical assistant.
Work have not helpful and on final warning, so if of sick before end of April, iam out of a job.
Can't tolerate stress, or confrontation, just help, is all I can say to if that happens. I have had this since I was about 7 years, as can always remember not being able to walk for couple of weeks. I have odd attacks over time, but never diagnosed.
I have bad times and even had a time with no problems at all, which was for years, then it went to months, now it's weeks without a attack.
So now I take it day by day.
Colin - Isle of Wight
• in reply to
Bless you! Remember though you do have rights with regards to work. And you need a diagnosis so you can show your work. I understand that this would stress you out. Also confrontations are never great. Do you have a considerate GP. Who could help you with regards to getting a good diagnosis.
Also sign you off work when required.
If I can help with anything I'm here.
Ali 😊
• in reply to
Thanks
Work won't do anything as illness not listed, that's the reason why I have got to the final stage. I don't no if the DDA will step in.
If it ever comes to it.
Thanks again as it's good to talk
Colin😀
• in reply to
Hey Colin anytime just drop me a line or a message. If doctors can sign people off for ongoing medical mysteries as some do call it. I don't mean that in a bad way at all. Don't just suffer in silence 😊🙏
Ali😊
Lou.
You sound like a true winner! I used to battle through it although running at any distance has never agreed with my leg muscles.
About the eyes now... I am treading on thin ice with this question but I want to ask if you are seeing an opthalmologist on a regular basis. I have problems with my eyesight and have been through surgery for different reasons.
They know that I have optic nerve damage and have to check my vision carefully. The optic nerve is one of the cranial nerves. There are twelve of these nerves in total.
I have long suspected (I am 61 years old) that as I age, the neurologic dysfunction from whatever it is we all have - some call it FND and then give it to me as their diagnosis - advances to affect the cranial nerves.
Here is where I do not like to tread but I offer it only as an opinion on my personal experience. I do not subscribe to the term dissociative seizures - even though I have them - because I think medicine only looks at it from the brain failing to do something whereas I think such seizures and other problems may also arise from periodic failure of nerves themselves to function right.
It is a very fuzzy distinction and I am sure I would hear a lot of hollering from medicine to wonder about this out loud.
That said, I would make sure you have your vision tested and monitored frequently by an opthalmologist to look for any problems with related cranial nerves.
My vision function is so erratic, that I can now only read and type in very limited periods before having extended rest to restore my abilities.
Take care of your eyes. Until we all get answers to why this disorder affects so much of our nervous system functions in so many ways, I think it is best to not ignore noticeable decline in any function.
I am grateful for your thoughts and send you my best wishes.
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