Hi all I have Nystagmus, and this means involuntary eye movement - they are constantly moving and I can’t see straight. I’m on Gabapentin for this at the moment which maybe helps a little but they’re still bad. My driving license is up for renewal next year and I know I’ll lose my license. I currently drive a hand control car as I’m a wheelchair user. It is my independence. I can cope with a lot of things - loss of use of legs. Loss of bladder control. Loss of bowel control. But this? This is pushing me to the edge. I can’t live with it. It’s ruining my life. One thing stops it - and please don’t judge me - ketamine. Unfortunately I can’t walk once I’ve done some - I have to struggle with a rollator at home. I’m waiting for a wheelchair accessible home, but the council housing situation is that it’s totally shut down in my area with the pandemic. I fall every day, most days more than once. I can’t drive of course. As well as the physical difficulties it makes me depressed. MS has pushed me to the edge many times but I fear this will push me over. I’m suicidal because of it. I’m isolated and miserable and I want out. This is by far the worst symptom I get. The only thing going well in my life is my Open University degree and guess what? Stupid eyes mean I can’t see the screen. Help me
I had Nystagmus as one of my very first symptoms of Ms. It actually improved to the point I hard’y notice it. I am on Gabapentin, Fentanyl patches and Amitryptiline but none of them were prescribed for the Nystagmus. What I am saying really is try not to despair, this situation may well change. Take one day at a time and don’t worry about your licence yet. I totally understand that driving is your independence and really important to you but worrying won’t change anything. Hang in there Best wishes Ellie.
Aw Badger, my friend, how miserable.
You most certainly won’t be judged by me for taking whatever drugs help your symptoms. I hope the ketamine does you some good, just by taking away some pain and allowing you a bit of relief.
I know what you mean about the car giving you some independence. I lost mine quite a few years ago now and omg, it’s hard. I’m very fortunate in having a husband who can drive and looks after me very well. That didn’t help initially as our cars become replacements for bloody useless legs.
And losing the ability to walk or stay safely upright at home added to bladder and bowel trouble is just unfair.
Perhaps you could get an appointment (phone or video) with your GP and you could talk about the nystagmus? Maybe there is another drug they could prescribe? I’ve just had a quick look at the (limited!) information about nystagmus on this site and they do say treatment is possible with gabapentin, baclofen, memantine or cloneazepam. Perhaps if you’ve not tried one of the other drugs, you could give something else a go?
Menwhile, keep talking to us on here, you are precious to us as well as to the people who know and love you. It’s hard to keep your spirits up if you’re lonely as well as having trouble with horrible MS symptoms. If it helps, try talking to a friend, I’ve recently become a fan of visual ‘phone’ calls, like Skype, FaceTime or Zoom. If you’ve not tried, but have a family member or friend you could try talking to that way, it might help.
Or or course, try phoning the MS helpline if you feel completely adrift and helpless to raise your mood.
Stay safe Badger
Sue
Hi Tingly
Speak to your neuro or MS nurse, to see what they suggest. An ophthalmologist may be able to help, though obviously any referral may need to wait because of the lockdown (unless home visits are an option). Speak to your GP as well, to get antidepressants - something to help steady you. And as for your degree, there are various things available that convert text into speech, like Google text-to-speech. They’re worth looking into.
Sorry I can’t help more, other than to offer to pray if you want.
Dan
Hi, I have nystagmus and my eye lids go into spasm, meaning they jump up and down, but only when I lay down, or sit up, look up, look down, but my nystagmus isn’t as bad as yours, I used to take Gabepentin, but mine was for the pain, not nystagmus, so although I don’t know for sure I wouldn’t think that will help the nystagmus, I tink you could do with being referred to opthamology to have your eye’s checked, I also had a MRI to see if there were lesions in the cellbellum area, I thnk if I were you I’d speak to either your nurse, or neuro, good luck, as I know even the small amount I get is wearing, x x
Hi, I think the gloom around the world today makes other things magnify so much.
We are in lockdown and it feels never ending…but we have to believe things will get better…just like I`m hoping there will be some meds or whatever to help you with the nystagmus. Sounds a horrible problem. I sometimes get a twitch under my eyes…very annoying, but nowhere near as bad as what you are going through chuck.
Hang in there…make that GP telephone appointment and believe things WILL improve.
We`re all here for you.
Boudsx
Hi Sue. I’m on the max dose of Baclofen. I already take Gabapentin for this. I seem to get the really shitty symptoms bang bang bang. Fine to wheelchair in 5 years. Soiling myself and wetting myself. I had to get my pet rat put to sleep yesterday and my god it hurt. He was keeping me sane through lockdown. I was reading him stories, chatting to him, and he needed me. Now he’s gone and it feels like the last thing keeping me going is gone. I’m here totally on my own now and I’m really really struggling.
Thanks everyone. I don’t have the strength. I’m on lockdown completely on my own. I had my pet rat Fred until yesterday. He had to be put down. I know he wasn’t a human but he was warm and furry and dependent on me. He was my reason to live. I talked to him, I read to him. Now I have to deal with the loss and the loneliness. I’m already on anti depressants, I’m having counselling. Nothing seems to be working and it’s just another failure to add to the list. I’m useless and worthless and I’ve never been good enough.
Ah now stop that tingly_badger, I bet that is so not true, we are all worth something, its just sometimes we forget we are. I’m really sorry about your pet rat and yes you’re going to feel lonely, but you have to think that a t least now he’s not suffering and in time and it will be time you could maybe think about getting another pet. You are not a failure, or useless,you are just having a bad of it and in time if you allow it things will get better, we are here for you, as you are here for us, so for now take good care, chin up and keep comimg on here for support, best reagrds Jean x
hi you have to let the gabapentin time to work. it can take several weeks. I know it must be awful for you, i get flickering eyes but nothing like you suggest.
the only think about ketomine is i would worry for you as its volatile, and not stable, it can be dangerous, so please be careful of it.
Hi Tingly, I’m really sorry to hear of your situation and at times I know it can be really challenging. It sounds like you are going through a dark time, but darkness can’t exist without light and I know things will get brighter for you. Losing your companion Fred must have been hard. I know they can’t be replaced but if you ever wanted another friendly rat I’d be more than happy to buy one as a gift for you. We are all in this together and you will never be alone. Take care
Oh TB, you are really in a bad place. Losing Fred must have hurt so much. We do put our hearts in the paws of our furry companions even though we know from the outset that they’ll die before us and by god, it hurts.
The current bloody virus and lockdown really isn’t helping at all. It’s making people like you, good people who wouldn’t knowingly hurt another soul, face life alone. Having painful eye trouble is surely the thin end of the wedge for you.
Don’t say you’re useless, worthless and not good enough. That can’t be true. You have a good brain, you’re kind and a nice person, you loved Fred and I’m sure have a fondness for other furry beasts.
Incontinence is a b*tch. I don’t exactly have fecal incontinence, having a stoma, but I did wake up covered in excrement one morning last week as a result of severe diarrhoea and an adhesive failure. Not nice and makes you feel like what you’re covered in!! So I get the feeling. That makes you feel bloody awful. And is a massive cause of depression I’m sure. Incontinence of any kind is horrible and it’s hard even to get cleaned up!
Like you I’m a wheelchair user, in my case it’s full time, especially since breaking my femur badly in November. My butt now needs help to stand up. I can’t watch TV anymore as my brain won’t retain the story from one episode of a series to the next (stupid brain!). Can you? That can entertain and keep you interested, even when you can’t read at present.
Do you have family and/or friends to talk to on the phone? It’s not everyone’s family that helps (mine doesn’t often, apart from my husband). But friends can pick up the slack. Even just talking to a volunteer from the helpline might make you feel more human!
Don’t forget, you are a nice human. If Fred loved you (in a ratty kind of way), then you’re really not that bad.
Keep talking to us on here, and try to get the negative thoughts about being worthless out of your head. You are not worthless. Not even the slightest bit.
You’ve said you have tried other drugs for th Nystagmus, have you tried clonazepam? To my mind it’s a great drug, relaxing spasms (surely nystagmus is a type of spasm?), helping with pain relief and sleep too. I can’t praise it enough.
Sue
See Tingly, there are many of us here who want you to fight this feeling of uselessness and hang in there.
Times will improve…youll come through it. Ive had my whats the point times and its hard…it`s bloody hard and takes some doing. We humans have hidden strength and can find more than we think we are capable of.
I know you can do this…please hang in there chuck.
Think about having another pet at some time in the not too distant future.
A friend of mine had a rat and I saw how intelligent he was and loving too.
Take care honey.
Boudsxx
Thank you so much for your kind offer. I would dearly love more rats but honestly I can’t look after them properly anymore. The cleaning out etc is beyond me now. I’m trying to rescue a cat now. It will make such a difference to my life
Thank you so much everyone. I’m getting used to him being gone now. I’m focusing on him being back with him brother, who died before Xmas, and imagining them in ratty heaven, able bodied and well, doing rat things. I spoke to my MS nurse and I am increasing my Gabapentin now. I’m on 1000mg per day but apparently the max is 3000mg+ (can’t remember exactly) so let’s hour it helps. Whoever suggested clonezepam - this is actually prescribed for Nystagmus so I’ll keep it in mind. I am also rescuing a cat. My tenancy agreement says no cats but I now have permission to get one. I’ve applied to some rescue centres - they are running on skeleton staff so I’m not surprised that they haven’t responded yet, but I’m maintaining hope and I will be a crazy cat lady. Thank you so much everyone. It’s great to know that I’m not alone.
I was throwing up from nystagmus- horrible situation! I patched the bad eye to help with the motion sickness but it was horrendous. But clonazepam solved it in days. I was so relieved. Now I’m on Tysabri and no sign of nystagmus (I didn’t have the need to continue clonazepam, and Valium works much better for my other issues)
Hi Tingly you are never alone with us lot n here,please remember that.We so get you its bloody hard when things get bad.I really hope you do get a rescue a cat it will really help you.It will give you something not only to love but it will also be a focus for you too.Have you tried deep relaxation i do it and it really helps me when i feel really bad.I go on youtube and go on a Martin L Rossman site hes a very well respected dr in America but boy does he know his stuff.I find his voice so soothing and the things he does to relax you really works i use it all the time now and so does my partner.We are going on daily to help us just now through this lockdown.Its not for everyone though, i think we have to try all sorts to see what works for us.I use it to sleep too cos at times i can hardly sleep for worrying.I hope you feel better soon.((((((((((hugs))))))))) xx
I use the Headspace app and meditate every day. Will look at the guy you mentioned though, sounds good 
Oh Ralee, what a lovely kind offer. Bless you!
Boudsx
Hio TB…innit great how your post has changed from the beginning?
Great to know.
Boudsxx