Loss of vision, then BAD headache

Last night I was in the backyard with the doggies when all of a sudden my vision went very dark then shrunk to a pinpoint. My husband helped me in and got me into bed. I went to sleep with minimal vision, but had full sight this morning. But I also woke up with a raging headache. I couldn't bend over to put the dog bowls on the floor, I would have blacked out I am sure. Just leaning over the sink to brush my teeth about killed me it hurt so bad. I know ms can mess with your vision, I often get double vision, but I have never lost my vision in all these years. Very scary! Has this happened to anyone out there? Kelly xx

24 Replies

  • Amore55 your symptoms sound very concerning to me. You should probably go to the ER. 😦

  • Thank goodness your husband was there, Amore55!!!!

    I have significant vision problems (double vision, blurring vision, and my two eyes not tracking movement at the same rate). I've never had (or heard) of what your describing, though. It must have been terrifying!

    Have your called your PCP or Neurologist about this yet? I would definitely be inclined to do so, but a healthcare professional in the group would be better suited to opine on all that.

    Either way, you and your family are very much in my prayers, --Christopher

  • Christopher GasLight , I have very similar vision problems. My eyes work at different speeds. Does fast movement, flashing lights, etc., cause you eye pain? Doing mostly anything visual makes my eye hurt after about 15 minutes. Do you have this?

  • Hi, Iona60. Yes, those situations cause my visual field to go haywire, which will then lead to eye pain and/or headaches if the source of disturbance does not abate. I also have problems reading. The "touch my finger, now your nose" thing really derails me, too. When I was in the hospital for an extended stay recently, the neurologist spent a ton of time examining my eyes, and from the exam notes, it appears that something is going on with my left optic nerve. I have both rAPD and red desaturation in that eye. Apparently, something is also going on with my ability to track lateral movement-- my left eye catches at midline, when a target crosses in front of me (which is why moving objects cause big optical problems, it seems).

    I'm gleaning all of this from the exam notes, however. Just had NP appointment with my new neurologist today, and he had not yet reviewed all of my records (so I'll have to await my next appointment in mid-March, to see more about all of this) (if you'll pardon the tortured pun).

    I am sorry to hear that you're having optical problems too-- we can ignore tinnitus, but we can't really ignore this kind of stuff, can we?

    Did Amore55 ever go to the ER and get an MRI? I sure hope so.

  • Amore55, it's Fancy1959. Please do not mess around with these symptoms. Get into your neurologist and tell him what's happening. I would also recommend you get into an eye doctor and have him check your vision. I had episodes with my eyes before and they warned me if it does like yours is doing you have to be careful that you haven't compromised your retina somehow. Your raging headache also concerns me. Anytime you have that severe a headache you have to be concerned about slow bleeds in the head. I'm not saying you do by any stretch of the imagination because I am not a doctor but my instincts are concerned about your symptoms. If you haven't made an appointment already do your darndest to get in tomorrow or go to the emergency room and have everything checked out there. This is not something you want to mess around with. I'm going to be checking back with you tomorrow to see if you indeed did make an appointment or go to the ER to be checked out. Is your headache still bad tonight? How about your vision is it also still acting up tonight? If your headache is still severe regardless of what your eyes are up to I'd say go to the ER tonight Kelly. It's not worth taking a chance over. You're important to this chat room and we want you to take care of yourself. Post back what you and your husband decide to do. I'll be praying for you in the meantime. Fancy.

  • Fancy, thank you for your concern and prayers. We decided to call my neuro tomorrow and get in right away. My head still hurts tonight really bad, so I must get checked. I'll let you know how it goes. Thanks again. Love, Kelly xx

  • The exact same thing happened to me about 4 years ago. Former neuro told me it was diabetes related and that I suffered chronic migraines with double vision. Turns out it is MS related thanks for my new neuro telling me and isn't something that will happen regularly. Oh yeah, I don't have diabetes and didn't then either. But I do suffer with chronic migraines which my new neuro treats with Botox injections and I haven't had double vision or a migraine in over a year.

    I hope you don't have this happen to you again and that you're feeling better. Hang in there! You're braver than you think!


  • Jennie, thanks for your information and also your concern. I really appreciate it. It was scary! Take care. Love, Kelly xx

  • Amore55, Kelly. Please listen to everyone here and get professional advice. Praying for you, big hug Jimeka xx

  • Hi Kelly,

    I'm so sorry your body is giving you the runaround like this !

    Advice is same as others - sudden major change/loss of vision warrants a trip to doctors for assessment. Yes, even here in UK where they are incredibly lax about many neuro symptoms, this official advice still stands ! I know you must be fed up with seeing doctors/having tests etc but you gotta go for this. Your symptoms would match with 'tunnel vision'.

    I've had some amazing 'head in a vice' headaches with relapse, often worse when bent down due to change in pressure. I wonder if you are experiencing any pain in/around or behind your eyes ? Since it was temporary, it is likely it was your MS having a nibble.


    I do get some migraine with aura or the 'psychodelic twirlies' as I call them !

    Take care and update when you can, Angela x

  • I have had experiences, not as bad but similar when I got too hot. I began wearing a hat outside, I highly recommend it, consider it...just consider it. Let your doc know about your MS affecting your vision.

  • Amore55 If your Neurologists doesn't want to see you right away, You get yourself to the hospital anyway! Something is seriously not right. Please, be careful Kelly and take care of yourself.

    Let us know what's up or let Bygonelines and maybe she can keep us posted?


  • Go

  • Go to the dr as soon as you can

  • A TIA (transient ischemic attack) is more concerning than your typical ocular migraine. Black indicates complete loss of blood flow to the optic nerve. You need to have a complete work up to rule out all precursors to a cerebral vascular accident.( stroke). Please seek medical care asap.

  • Marktwinter, it's Fancy1959. Your post was very informative and I had not ever had anything explained so precisely about losing vision and it going black. We're so fortunate to have so many people in this chat room who had experiences and are willing to share them with everyone else. Good to know about losing your vision and it going black. I've had my vision go all swiggly and lines appear in in the eye specialist warned me that if it continued to happen or if it happened severely I needed to get in ASAP because I could have horn the retina or injured it somehow. I feel for killing because it is always so scary when the eyes get involved along with the killer headache.

    Kelly I hope your out there and listening to everybody. Does your neurologist have an appointment he can work you into today? If not please promise me you're going to go to the ER as everyone has suggested. Please keep in touch and let me know what's up with your headache and your eyes and your doctor's appointment dear friend. Fancy

  • I'm so glad you are seeing your neurologist. I'm sorry you've had to deal with a new and painful problem. I pray you get answers and that it doesn't happen again.

  • Amore55 Let your neuro know. How scared you must have been during the episode, and will continue to be until you get this sorted out. I am so sorry about this. Scary as it was and is, it could be MS related, could be migraine, and you may never know. Since having optic neuritis almost 30 years ago, I have had vision disturbances ( a short list: while I am reading, a line of print changes color, or grows/shrinks in size; driving, the white lines on the road become pink; walking outside, the light dims as if a gauze curtain has descended from a cloudless sky; anytime at all, I perceive a flash of light within one eye, particularly the left; sometimes when my eyes are closed and I am trying to sleep, I perceive moving colored lights or see shapes that morph into gargoyle faces before fading away). Though I often have dull eye pain, particularly when I am over tired, these visual disturbances are painless though very very annoying. I thought I was crazy (and I may be, who knows), but my neuro said these are damaged nerves firing or a silent migraine (i.e. not the classic type). So talk to a neuro opthamologist or your neurologist. Please!

  • Gargoyles goatgal ? That is very precise. Lol

  • Karen-x Hey, I calls 'em like I sees 'em. :-)

  • Amore55 please let us know what happens. I am praying for you!

  • Amore55, I hope you saw your doctor and are feeling better now. Let us know.

  • Wow! Very scary indeed. I agree with erash and others. I would hope you get this checked out by your pcp or neuro. Pray all works out well.

  • Hi, Amore55 . So sorry to hear, but I have to say, I have suffered with chronic migraine for almost 30 years and your symptoms exactly like mine. Unfortunately, I have found that at the least among the MS people I talk to seem to also suffer with migraine. I wish someone would do a study to see if the two are linked. In the meantime, I strongly suggest that you tell your neurologist your exact symptoms and see if you are starting to get migraines. Good luck and I hope that you are not starting down that road.

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