I suffered a CVT stroke affecting my Thalmus (central/right) in Jan 2015.
Having been a minor migraine sufferer since my teenage years they are now hemiplegic, severe and at least 2 a month.
I had been on gabapentin until the end of November for tri(something) neuralgia but have had to come off that to go onto topiramate to try to get the migraines under control. However the side effects from the new drug are horrible and the nerve pain/sensations down stroke affected side are getting unbearable.
Does anyone know of any links between FND and Thalmus damage?
Written by
HoppyD
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I am sorry to hear of your suffering. I have a large lesion on the thalamus part of my brain, also diagnosed with Trigeminal Neuralgia and take Gabapentin and Amytryptaline for it. Last June was diagnosed with FND where I get shocks going through my fingers to arms, burning in my feet and I have permanent double vision. You are the first person I have "met" to have both TN and FND. I am due to have radio frequency lesioning for TN as am fed up with being in high levels of intense pain and working too. This is probably no real help to you but I hope your symptoms improve and I send you lots of love and positive thoughts.
Debs do you find glasses help the double vision? I have this too and went from not needing glasses to fnd attack severe headaches double vision and now a constant glasses wearer ! Off to eye check again Monday as Vision I fell is getting worse! Problem is some times I'm told to move eyes certain way but brain can't understand how to do it!! 😂
Hi! I am under the care of the eye clinic at local hospital. I have to have a prism put inside the left lens of my glasses otherwise I am not allowed to drive. I am supposed to wear the glasses for walking around but I get very disorientated and fall over. So I see properly when driving but double the rest of the time! It's exhausting ... I had an appointment last week and no improvement but at least it's no worse. Sorry to hear about severe headaches. My main problem at mo is electric shock pains going though fingers to arms and burning pain in feet. It is so wierd this condition. We all have so many different symptoms. I wish you well at eye appointment. Take care x
I am confused as to why you have been told FND for your pain/eye issues, when you have evidence of a thalamus lesion. Did you have a further scan before they gave an FND diagnosis for your new symptoms ? Please see this website for possible thalamus damage effects info :
I have had three MRI scans which show no worsening of lesions and Neurologist's and consultant ophthalmologist say my vision is not related to lesion. I have to have 6 monthly scans as lesion may lead to MS. I have had so many investigations and my diagnosis to date is Trigeminal neuralgia and FND. So it's a case of just being monitored. I hope you are keeping as well as you can, best wishes,
Hi Debs, I've was put down as FND 4 years ago due to a clear brain scan on first neurological attack. I have now had 2 more relapses, each one leaving me with progressively more permanent disability. I have finally been referred back to neurology - awaiting MS investigation results on neck/C spine. I'm glad to hear you are being monitored and hope the lesion remains an isolated incident for you. Angela x
I'm sorry to hear you have had two more relapses .... I wish you luck with your results and hope you get the best treatment and support you deserve. I read so many books on MS last year and diet books etc ... As a nurse I WAS under no illusion that this could develop from clinically isolated incident to MS in time, but having read your post I realise it really is a possibility. I've had a stressful week at work and I keep getting electric shocks in my arms and terrible burning pain in left foot. I am so used to high levels of pain I'm never sure when to be concerned .... I checked out the website you suggested, very interesting - thank you. Keep in touch - I send you lots of love and hope you don't have to wait long for your neuro appointment, Debs xx
Thanks hun! Headaches where just at the time I had my attack!! It's mainly vision, left sided weakness, numbness, brain fog, random body jolts in my sleep, excessive tiredness that hits like a train for a few weeks then goes 😂! Off to neuropsychologist in St. George's this Wednesday for a check up!! Hugs xxx
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