Heavy Eye Lids: Hi Just started to... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Heavy Eye Lids

Mygeordiebud profile image
8 Replies

Hi

Just started to suffer from heavy eyes where it takes all my strength to keeps eyes open can

Last up to 3 hours and I just have to give in and shut eyes them most of time I end up

Going to sleep.

Just wondered if anyone out there was having the same problem and if anyone has any answers regards stopping it or help to stop it happening so much.

Would be most grateful for any help out there. It’s just another problem on top of everything else and just seems to be one thing after another suffering severe hip bursa pain was going to have a guided steroid injection into the hip but been put on hold due to virus never thought that part of the hip existed and wakes me up causes 10 out of 10 pain when I jerk the joint and when standing causes me to go light headed.

Again any help with anything that anyone knows if there is anything available to help

Many thanks for reading my post and I hope everyone is staying safe out there.

Mark H......

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8 Replies
Pendulum profile image
Pendulum

Hi. Just wondering if you have been tested for Myasthenia gravis.

It causes fatigue and weakness in muscles, predominantly eye weakness, but also in limbs and chest area. It can cause footdrop etc.

Having gone through years of tests with a diagnosis of fnd from my neurologist i happened to go to my local optometrist a few months back when my vision was badly affected.

They sent me straight to the hospital optician who was trying to wade through my notes and said " You ARE still taking your meds for Myasthenia Gravis aren't you?"

I explained i had never heard of it and wasn't being treated for it and she was really shocked saying "but you have all the classic symptoms of it!"

Now waiting for appointments back with hospital optical consultant to run tests. They have said if tests are positive they will then contact my neurologist with the results. They couldn't believe he hadn't tested me for this.

Look it up online and see if you match the symptoms. Its treated quite easily.

Good luck.

Mygeordiebud profile image
Mygeordiebud in reply to Pendulum

Will have a look thanks

Mark

Lolastar profile image
Lolastar

I get the heavy eyelids too. In fact I've finally started to put together that if I begin to get heavy eye lids and or slurred speech then not too long after (minutes, hours, or within a day or two)I will have multiple spasms and/or nonepilectic seizures. The fog or super sensitivity are also indicators. So my main goal when the indicators begin to happen is to slow down, relax and be in a soft safe place. If my lids are heavy I close them. It sucks, but I found the more I fight it the more it fights back and the worse it is. This my experience anyways.

Pottsy1 profile image
Pottsy1 in reply to Lolastar

My housemate has suffered with not being able to open his eyes for lengthy periods and reports stinging. His eyes are very bloodshot post event. He has also started to experience periods of temporary blindness which is disconcerting. Interestingly he had his eyes tested and couldn’t see with new glasses. Four eye tests/four significantly different prescriptions over 2 weeks

Mygeordiebud profile image
Mygeordiebud in reply to Pottsy1

Hi thanks for reply

Not ended up not being unable to see but I also get the stinging in the eyes. every time I get eyes tested need new lenses. Nightmare just have to add to other disorders I have. One word “nightmare” just waiting for something to happen whether eyes or shakes to other on my list.

Mark

Mygeordiebud profile image
Mygeordiebud in reply to Lolastar

Yeah I tend to close my eyes and wait for it to pass, can go from heavy lids to so heavy I cannot keep them open so just keek closed till it passes over can be minutes to hours, just another to add to FND

Mark

Robyn83 profile image
Robyn83

Yes, I suffer from the heavy eyes,worse when I was exhausted from work and stressed, I suffered from it through high school, starting always after midday ( have a huge gap in my geography and maths classes due to.this) and could go on for a couple of hours, then growing up it happened whenever I sat down and stopped doing work, on a bus, train, then driving, often muscle spasms followed afterwards. Allowing even 5min to just allow yourself to close your eyes and sleep made all the difference, for.me it was like.my brain saying it needed to re- boot, like a on and off switch for computers, unfortunately it is.not always possible to do this, but if you.let your family/ friends, even work know if your going through this, just make them aware what it is, and kindly ask them not to disturb you if they see you seemingly passed out.on a bed/ seat reclined in the car seat, it could take only 5min to revive myself, other time half an hour or more, but may be something you have to look into further, if you suffering from sleep related problems, this will exasperated the problem and the FND , so ask doc for a sleeping test perhaps...if the problem is ongoing and there is a time it tends to start ,maybe look into doing part time work, and having a break from driving a car. I aLso found certain foods I ate made it so much worse....

Mygeordiebud profile image
Mygeordiebud in reply to Robyn83

Hi thanks for reply.

Unfortunately I don’t work due to an industry accident in 2000 that left me with spinal injury L5 and then a spinal fusion.

Then in 2017 needed a disc decomposition at L4 after which my FND started been took cannot do anything regards surgery in this area as will end up paralysed do just have to put up with pain now.

Affect bladder so now have a supra pubic catheter but suffer from water infections all the time.

FDN started in left leg straight after L4 surgery then moved to other leg and then arms can wake up not be able to move any limbs or one limb and have to wait anywhere up to 4 hours for them

To come back. Then violent leg shakes which leave your exhausted to hand tremors to unable to pick things up with your hands. To high blood pressure.

Now heavy eyes the FND is a nightmare so just have to put latest affect on here just to see if it can be linked to FND. I was never I’ll till accident in 2000 then been downhill since. Live with my wife who has progressive MS so are home together all the time married 34years not bad as been on top of each other for 20 years always someone out there worse off than me that’s how I see it...

Mark

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