Morning guys ( or evening if ur in the US )
Just wanted to ask a quick question my worst symptom is being disorientated this is very bad when I’m outside or walking it’s like my eyes cannot keep up with my brain and I feel drunk or high. Also mean my eyes cannot focus and It makes me feel very spaced out. It’s truly the scariest most debilitating symptom and no doctor has ever explained it to me .
I read on the Walton centre thanks @Onandon03 that dissociation. Is due to nerves in the brain not working properly I was just so relieved to see it’s a common symptom along with being disorientated.
My question is have any of you experienced this? If you have was it time that corrected the issue or medication? I desperately want to fly but I feel this is the main symptom crippling me and I’m wondering if the meds will take this away.
All help and advice welcome hope everyone is having a great day
All bets are off with this thing! There are just so many symptoms like this.
Yep, it all began for me feeling very spaced out, thought I’d had a stroke, but apparently hadn’t.
I had full on visual hallucinations at one point with the floor rocking violently side to side. Or supermarket floors being at a slant. Truly the closest I ever got to seeing the inner workings of the body laid bare. It got almost immediately better with Amitriptyline for me, but that could be coincidence - might have been getting better in any case.
Now you say all help and advice is welcome so you’ll need to take this on the chin cos I’m going to be brutally frank with you now. You need to stop continually panicking. After MAV itself, Anxiety is currently your (second) worst enemy. It could even be delaying your recovery. It’s tough being young and fit to be suddenly incapacitated by something most people will never even get to hear of yet alone experience and you are desperate to join your boyfriend. Totally understandable but you are going to have to accept that, temporarily, that’s how it is. You aren’t well enough to fly. The eminent Dr S told you that. I didn’t actually realise until I susequently checked it out flying can actually be a trigger. Not surprised but didnt realise thats widely accepted. It would therefore be folly to fly just now because it could mean undoing all the good the drugs have done so far now they appear to be starting to work. At the minute your MAV is in a fragile state. Too many triggers and you could end up bed bound a second time. If misplaced VRT could do that to me, flying could do it to you, all too easily. You really are going to have to sit this one out a bit.
‘Eyes dont kept up with brain’ I used to get it all the time, with accompanying constant nausea. More or less all day, every day for a couple of years. Began to think that was my ‘new normal’. Now I dont have it at all 90% of the time. The meds control it as yours will once you have been on a sufficiently high enough dose for you for a sufficiently long period. From my exp I’d say that could be some months, not weeks.
As James said so rightly. If you can only accept that you have this condition, the drugs are beginning to work and will control all this rubbish given time and relax a bit and try to live with it rather than fight it all the time, I think that would be better for your symptoms than adding in another drug. Hard as it may seem positivity can really pay dividends. Helen
Thanks @Onandon03 I am truly trying , it is just very hard as I panic this will become my new normal. I am taking every step to help my anxiety seeking cbt and counselling and trying to meditate but as this symptoms is very bothersome it is very hard to keep the panic at bay. I accept I’m ill but to accept I’ve lost 10 months of my life with god knows how long left of this nightmare is truly very hard to accept . I feel at 30 I am missing out on a lot even having kids right now because I can’t even get my body fixed let alone attempt to have a baby . I think my last conversation with dr S was very quick and we hardly had anytime to talk as it was rushed so I don’t feel he truly understood half of what I was saying . It is less panic I am dealing with but more utter depression and I don’t know how to get out of it with no relief in sight . The symptoms of anything in my field of vision making my head spin is very hard to accept . I appreciate where your coming from and from someone who is better I u derstand your point of view . But I really am trying my best despite the circumstances . A
I think a lot of sufferers appear to go through a super scary phase. My experience was worse than any scary film I’ve ever seen and probably worse than any nightmare I’ve had. It’s super mentally trying … you just have to know there is light at end of tunnel. The body works in many ways to resolve the issue. The main thing you need now is keep working through your medication exploration to help to stabilise yourself … then unfortunately it can be a bit of a long slow slog to further improvement … but it certainly does happen.
I personally would also suggest you follow Dr. S’s general advice and go super conservative on exercise … just nice walks and light exercise etc. Any sharp movement of the head and bringing the head below my waist would always cause trouble for me. I once jumped up and down on a friends mini-trampoline for a few seconds in the first year I had this illness … such a bad idea … took 2-3 weeks to recover from that
I truly feel like I’ve been living in a nightmare I can’t escape from. That’s exactly how I would describe it . As for dr s he said I can do light weights which is what I do I am pretty much half at what I was before this started and I incline walk on a treadmill that’s all I do for how . So nothing intense if anything I feel better when I exercise it’s the only time I don’t think about it . Also thank you for the kind words I’m sure il get there eventually
I know you are trying. I know how hard it is believe me. It was even harder in some ways for me. I had nobody to talk to because I couldn’t look at a screen TV or computer at all for months on end. I couldn’t look out the window, had to keep curtains closed 24/7 because of light sensitivity. Weeks flat in bed in silence, in the dark. You say ‘I’m better’. I wish, Yes, better but nor back to normal. Before MAV I could walk 2 huge dogs 5 miles without a thought now on a good day I can do 1.5 with a walking stick! Yesterday I played with the dog in the garden without using a walking stick comforably for first time in over 3 years. I’m not saying it will take you that long. It will not. I’m older and had poor medical advice and virtually no medical attention for too long and no Dr S to help me. Just an example of what a nut MAV can be to crack. The eye stuff is most disturbing for me always. It’s horrid. The meds will take it away. It’s not for ever.
Do try to live in the moment. Live for today. Just for a few more months. You are young. Baby’s in the future. Something to look forward to! Try to find some other distraction to take your mind off of VM for longer periods of time through the day. Helen
So true what you say Helen…every single day is different. Some days i cant cross a road because my eyes and brain cant work together. Ive had to go back home and think" i’ll give it another go tomorrow"…its soul destroying some days
Jo x
I appreciate your help I wasn’t trying to pull a poor me , I know there are so many worse things I lost both my parents to cancer and that’s far far worse . However the way mav changes your whole view of the world is by far the most debilitating thing I’ve come across . I am so sorry to hear your story @Onandon03 I can’t even imagine that although the first 6 months of this were pretty much the same for me . I am out of bed because I force myself everyday. Hopefully in more time you’ll be back to your 5 mile walks. I like to believe if the brain isn’t damaged there’s no reason it can’t calm down. Thank you for the advice I think your right I need to find something else to occupy my time I will try this . X
I didnt suggest you were pulling a poor me. Its the no light at the end of the tunnel syndrome. Been there. Just hope I never have to go that route again. Once was more than enough. Yes MAV changes yr view of the word. Certainly does. Long-term I think we’ll all be more knowledgeable for having experienced it. Though its too early days for you to appreciate that now. So sorry you lost both parents like that. Their support now would have been invaluable to you. I lost my Dad to cancer, dreadful. Sure the brain can heal. MAV hasnt permanently damaged it. Once I couldnt stand at all, now I. An almost always stand on one leg if I want to. That’s Tai Chi for you. Brain didnt forget. Just put it on hold awhile. Hope to get back to longer walks one day. Trouble is while I’ve been getting MAV hubbie, not to be left out, thought he’d just develop an arthritic hip (he’s just attention seeking really, likes the limelight!) so by then he probably wont be able to keep up. Life does like to kick you while you are down which is why You are here and He’s in US, We’ve all just got to try to keep kicking back. Helen
Thanks @Onandon03 I’m morning overly religious but this bout has made me turn to my faith more and more ! I appreciate one day this will better me as a person for now it’s hust hard to get through but I do appreciate your words and will take them on board ! Sorry to hear about your hubby , hopefully you both catch each other up and return to full health Life certainly does kick us when we’re down but hopefully makes us stronger once we’re back up
Yes, for me this is also the worst and most debiliting symptom(s)—the spaced-out disconnected feeling, disequilibrium and floating feeling while walking, visual vertigo, brain and eyes not in sync, always worsened by motion. It just takes all enjoyment out of all activities and makes me feel like I am not participating in my life, just existing.
For me the severity of these vestibular symptoms, if that is the right way of putting it, mirrors the severity of the headache—so I view it all as part of the migraine, and am counting on the medication to help and in the long term, with luck, the brain heals. I have no idea what is happening in my brain physiologically to cause this; seems like no one really does.
Yesterday was an encouraging day (almost clear-headed, virtually no headache) and today quite a bit worse on both fronts. Again, hard to say why—yesterday’s weather should have been triggering (thunderstorms and rapidly changing barometric pressure) but wasn’t; today weather is stable and head is gross.
Since there has been very slow and gradual improvement in the 3 1/2 months I’ve been on medication, I can only hope that more time will bring more gains. I try to reorient my thinking and view the healing as my purpose for a while now. It is easy to feel that all this time where I am not working and doing so little socially is wasted or lost, but that’s a terrible frame of mind to be in. So, for now, my purpose every day is to give my brain time and space to heal, and do what I can physically to regain some of the fitness I’ve lost (due to the migraine and other life events).
I think Winston Churchill said “When you’re going through hell, keep going” and yoga philosophy teaches that “The only way out is through.” I know there’s not going to be a magic day where I wake up and all my physical problems are gone; I’m going to have to experience it all on the way to something better. Without the intervention of magic (which I still do pray for), there is no other way. A friend of mine said that since this condition has gotten worse, it can also get better. She is a scientist and that logic seems sensible. I try to remember that through the ups and downs.
Exactly how I would describe it too, a nightmare you can’t escape from. But, you can and will escape. I’m getting there myself after nearly 2 years, seemed impossible and hopeless at the 1 year mark but now I can see light at the end of the tunnel.
And yes, eyes don’t keep up with the brain is a classic symptom for me. Made me exhausted and anxious for an entire year.
No way of knowing for sure but could just be either delayed reaction or cumulative triggere. Restaurants one main trigger for me but sometimes reaction takes up to 72 hours to kick in.
How very true. Neuro-otologist wrote in my report ‘it’s probably multifactorial’. Unfortunately omitted to say what the various factors were. So none the wiser.
That was so very well said @lsengara I actually had therapy today been going since this kicked off and she helped me calm down I have to learn to accept this is how things are as hard as it may be . This illness take your mental strength to new levels .
I agree I believe years of neglecting my body and being stressed kicked this off so I am trying very hard to pace myself these days. I am so glad to hear today was better that’s a great sign the drugs take ages to work so maybe it’s fibally kicking in. I know progress is very up and down but hopefully this is a good sign your meds are working . Hoping in a few weeks I get some better days
my worst symptom is being disorientated this is very bad when I’m outside or walking it’s like my eyes cannot keep up with my brain and I feel drunk or high. Also mean my eyes cannot focus and It makes me feel very spaced out. It’s truly the scariest most debilitating symptom and no doctor has ever explained it to me .