For those that have Meineres. Do you have light sensitivity and screen sensitivity? Do you have neck pain and headache with your Meineres? And do they trigger a vertigo attack and make the head pain worse? Finally, have any of you had symptoms that have come on suddenly and then have lasted for months? If you have had attacks that have lasted for months did you ever get bad to where you were before?
I did but I was diagnosed with Secondary Hydrops which is related but not the same as Menieres. It is more constant and not as episodic whilst also being less destructive of hearing and balance.
Hi, no head pain with the Menieres, all the other symptoms you have mentioned I would say are down to my VM. Menieres attacks involve slow spinning to start that then gets violently faster and vomiting. The attack last for about 4 hours, it’s more episodic and less continuous than VM I find. Hope that helps.
It’s really interesting how you separate these things into two conditions. What makes you think you are suffering from two rare conditions instead of one that combines all of your symptoms? Are you so unlucky that you have got two rare conditions, that even more unfortunately affect the same bodily functions ie the audio and vestibular functions? Do you ever think about the fact that the anatomy is singular?
I have had aspects of “Menieres” and aspects of migraine but I do not consider myself to have two conditions. For me it is definitely one condition and the best explanation for it appears to be when I think about it as Secondary Hydrops whatever the driver. That said, given the lack of complete clarity I often wonder if there is some other explanation. But for me there is surely one underlying issue at the heart of it?
It is often said that Migraine Associated Vertigo, Vestibular Migraine and Menieres are all related and we sufferers are all on some part of a continuous spectrum. I suspect the concept of Secondary Hydrops is also on that spectrum.
My pharmacist who I’ve chatted to about my MAV regularly, and who is very knowledgeable (more so than many doctors it has to be said) told me VM was a rare condition. I dont know if I was supposed to be flattered lol.
My reply was that a) its likely very underdiagnosed, b) rare conditions dont get the clinical research or drugs funding more common conditions get so treatments are extremely slow in being developed c) I’d swap the rarity badge for feeling normal please.
I’ve been diagnosed with VM but my symptoms could be attributed to several other vestibular disorders.
I was very ill ten years ago with severe vertigo, headache, etc. but with drug, vestibular and vision therapy managed to gradually stabilize. I lived a relatively normal life for eight years with only occasional bad days. Then several months ago out of nowhere things once again spun out of control.
Light and screen sensitivity are huge problems for me (along with sound). What has helped somewhat is a pair of glasses with FL41 tint which my neurologist recommended (you can buy them online). Worth a try.
I made an appointment with my eye doc and he insisted I no longer wear bifocals/progressive lenses – said they’re too much for my confused brain. (Note: the eye exam was tough – I was dizzy with migraine for four days.) He added new prisms to my prescription plus a FL41 tint. Although I wasn’t happy about using two different glasses, I have to admit the new glasses seem to have reduced my symptoms quite a bit.
And one more thing . . . I never leave the house without a brimmed hat. Good luck, Valhalla.
If it is any consolation I struggled with varifocals and they occasionally gave me vertigo (when near kitchen worktops for example) for a phase but it’s settled down now.
How do you cope with the tint? I got a green pair but the green colour is unpleasant. I don’t want everything i see to be coloured green, so i wouldn’t wear the glasses regularly. They haven’t helped with me viewing screens anyway.
Sorry for the late reply. The FL41 filter isn’t the same as sunglasses. The first (non-prescription) pair I bought was darker and I only used them outdoors or when looking at screens. My prescription lenses are a very light tint and I have no problem with them indoors. Both my neurologist and optometrist (who specializes in vision abnormalities) recommended them. Here’s some information from the University of Utah.