What causes this is still unknown. Science hasn’t moved on that far as yet. So even the experts are speculating and IMO their guesses oftentimes aren’t half as good as those of people who are experiencing it. They can’t be. In practice, It’s something you need to live with to fully understand or at very least live with a person who has it.
Until pretty recently the 24/7 dizziness aspect most on here experience was considered ‘an aura’. The ‘experts who did not believe that just refused to acknowledge it ever existed telling people, who were constantly dizzy, that ‘it is not possible’. Bit out dated now by most ‘experts’ but they cannot explain. Quite simply they don’t have the definite answer. It has yet to be found. Opticians will tell you floaters are harmless and everybody gets them it’s just some people’s brains block them out so they do not ‘see’ them. You gotta remember our eyes only gather visual info, our brain dictates what we actually see. One example. We each have two eyes and it’s the merging of the two different views (one from each) that gives us 3D vision. Most of the general population never experience double vision but it’s there. All the time, it’s there.
Neither neuro I saw would agree to manage my condition either. Not interesting enough for them I suspect.
I have been suffering with this since 2003 and as yet have never had a definite diagnosis. I was misdiagnosed 12 years as BPPV and since then had two probable Migraine Associated Vertigo diagnoses from two different specialists. Take solace. If the preventative works then VM is what you got. That’s the experts talking. Not me.
Trigger Avoidance is part of the prevention strategy. That could refer to certain foods, bright lights, keeping off certain types of transport etc etc. Doctors suggest treating any comorbidities (other conditions, anxiety). Check out any other possibles, Vertical Heterophoria if it seems to fit otherwise relax, Stress is a huge trigger, try the treatment and don’t let chasing the definite diagnosis become an obsession. Probably a hiding to nothing as you say. If it is Hormones, adding in synthetic ones will only make it worse. Again not my words but my own doctor a couple of weeks ago. Unfortunately we can avoid cheese or sea travel maybe but our own hormones we are stuck with!
I’m sorry you’ve been dealing with it for so long. Do you find it’s gotten any easier? And by that I mean…I get really scared and anxious when I start feeling lightheaded which then probably makes me feel more lightheaded.
Does dealing with it get easier in time?
I’m genuinely curious to know what the cure will be, although I may not see it in my lifetime. Sometimes I think about it. Surgery? A medication? I hope someday there is a cure, even if its not while I’m still here to see it.
Please Lord let there be a cure (in my lifetime - like, this year!)
I feel though that the problems many of us have are very different. For example, some had ear trauma, some may have naturally developed it from previous migraines, some had it trigger from BPPV (me I think), others, hormones. Then do we have different ‘damaged’ areas of our brain and/or ear giving us the same symptoms??
Back to your topic though. I too get motion sick and felt really like I was on a boat - vomiting for weeeeks! My eyes and vision have changed for the worse and harbours most of my persistent problems. These eye floaters - mine have dramatically increased too. I wonder what that is? So strange.
Fortunately and most probably because I am my Father’s daughter I am generally very calm and able to divert my energies much more towards practicalities. I don’t remember ever being scared when this all started and it did start and continue pretty dramatically for me. Read my diary. Maybe I was fortunate in that often I felt too ill to have the strength to be anxious. I don’t recall. Familiarity should make dealing with anything less traumatic but as you say Anxiety will very quickly wind the dizziness up. You really must learn to keep calm. It’s all a question of Living in the Moment and just Keep Breathing when it strikes. You know what it is and that it will pass. It can’t kill you. All that worrying. What is it? Will it happen again? What’s causing it? When will it go away? It’s all perfectly natural to think like this but all that worrying isn’t helping, quite the opposite. Hard to accomplish I appreciate but worth the effort to try.
Getting way off topic as you say but so important I really felt I couldn’t let it pass. I agree totally with your interference that there is more than one possible cause of MAV. In fact I would go as far as to say that for many MAV is an umbrella term for many people who suffer a similar set of symptoms. However I would want to avoid the use of the word ‘damage’ in relation to it. It’s much more the result of confusion caused in incorrect sensory messages being sent to the brain. There can’t be any actual ‘damage’. I can say that with confidence taking myself as an example. I have had severe vestibular attacks. I have had various periods some as long as eleven days bedridden, without balance, unable to stand up, with extreme Brain Fog that I couldn’t think, with photophobia which lasted the greater part of two years during which I couldn’t even tolerate daylight and periods as long as months where I couldn’t view any type of screen whatsoever, and so on, loads of extreme symptoms but here I am for the majority of the time without any of the above. Does that indicate ‘damage’? I wouldn’t think so.
You made me laugh! Which I desperately needed. I hope for a cure this year too, but I’m doubtful it’s anytime soon considering doctors don’t even know much about this!
What improved your motion sickness or was it just time?
Yesterday and today my heart has been pounding and my heart rate is much higher than usual, even while still. I have a message out to my doctor but I’m afraid I’m going to have to stop the amtriptyline. Sigh. I was really hoping this was going to be the medication that helped me.
I wish I was more like you! I am more anxious by nature. My 2 year old gave me a rough first year of life. Complications after birth, colic, multiple questionable food allergies and a hospitalization when he was 6 months old to rule out seizures which thank God he didn’t have. His first year was a constant state of stress for me. I really think that and other preexisting factors in me are truly what brought my MAV out of its shell. Sometimes I wonder if I had gone on an anti anxiety med during that stressful time, if it would have prevented it from exposing itself. I’ll never know but it probably would have shown up eventually.
Anyway, I need more pep talks like yours. I’m in another MAV group and sometimes other sufferers act like this puts you at risk for so many dangerous comorbidities. Sometimes I don’t know where to look for reliable information and support. Hopefully once I find a provider I can trust, I can find it there.
Sounds as if you are getting a bit of a better idea about the condition now. Stress can be a major trigger and triggers are very often cumulative. Could well be had your anxiety been addressed when you were having so much trouble with your little one. IMO everybody who goes on to develop this must surely have some predisposition towards it so it would probably surface eventually.
I trust you don’t have too long to wait now for contact with your provider and that their support will be adequate for your needs. Meanwhile I would suggest you read @Jessyka_Nettleton’s recent posts and take her comments on board. I sense lots of similarities between you. She too has a very young family. The constant chasing for a quick fix can be very wearing and Dr Google can just increase anxiety. I think you would be well advised to ease up and try to distract yourself with something else.
I think you’re right. I have two months until I see the headache specialist and I think in the meantime, I just need to try to get my mind off of it. It’s just hard when I can’t go anywhere.
Thank you for linking her for me. I will read yours and her story when my kids are well occupied.
Any point in checking out his/her office to see if you can get on a cancellation list? Could you get there at short notice if needed? Would be worth it in view of your ongoing anxiety. I have had great success in the past by doing that with specialists in all fields. Worth a try.
You say you cannot go anywhere? Are you Covid Lockdown? Here in U.K. all unnecessary travel is banned and people can only leave the house once daily for exercise. Been that way for weeks and no sign it’s going to be lifted any time soon. Is that it? One of the best thing you can do for your condition is to walk outside regularly, daily for preference. One of the best forms of exercise. Try it providing you can do so safely.
Btw don’t fret about the Ami. Happens to many. If you have to come off there are plenty of others available.
I believe I am on the cancellation list. I’ve seen an ENT (did all the vestibular testing), my primary care physician, an ophthalmologist and a neuro already who have all recommended I see someone else.
We are not currently on a lockdown, but I can barely make it in the car for 10 minutes before feeling really sick. Nothing is in walking distance from where I live. It’s bitterly cold here right now but I do walk in my treadmill on days when I’m not feeling too bad.
That’s reassuring to hear it’s common with the ami. I was hoping it would work for me but deep down I knew I would have to be very lucky to have total success with the first med I tried.
That’s good then. Hope you get one soon. Treadmill is good but I guess if you can use that you could, given the space, manage to walk outside. It’s really important with vestibular conditions to make sure you get outside regularly. Hope you got a yard or communal space you can use. Just walk around for 10 minutes or so.
That’s why I told you. I guessed as much. Being outside puts different stresses on our balancing system. The wider horizons and the light is different, people soon decondition to exposure to the Outdoors. Many people who don’t have vestibular conditions such as MAV experience difficulty being outdoors after any lengthy stay in hospital. By not going outside People can even develop agoraphobia. So bit of time spent outside is bit of a preventative measure. Apart from the other general benefits of exercise anyway. So something worth keeping in mind. Not sure how you are fixed but do stay safe. Broken bones and MAV aren’t a good mix. I guess Your part of the country very cold at the moment. Here it’s very wet and pretty mild and I see the young mothers out pushing pranks most days.
It’s in the 30s today but very sunny. A ten minute walk is definitely doable. Supposed to be high teens next week so maybe not then.
I’m so glad you told me because I haven’t been outside in over 6 weeks. I haven’t been anywhere in over 6 weeks. The day I am able to go to the store again is going to be quite the feat. I will not do it alone, that’s for sure.
You should find a short walk outside much more comfortable than a supermarket🤞. However first few times outside after a while may be uncomfortable so please make sure you have somebody with you. If you are very light sensitive you may need sunglasses and/or brimmed hat so check that out first. Sometimes walking poles or a cane can be useful. As you can use the thread Mill your balance should be good and you will probably be just fine. Keep it short first time and see how it goes. Good Luck and report back on how you get on.
It worked for me - I had severe motion sickness, vertigo, balance, loss of vision, nausea, vomitting and migraine. My GP tried several other preventative meds first which didn’t work but amitriptyline was the one to work for me. I had to increase to 75mcg to stop everything but it did control it all very well.
I no longer need it as I now take T3 (for hypothyroidism) which helped massively and then I added magnesium glycinate which has stopped the remaining symptoms x
