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.
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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.
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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.
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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.
I’m having a very difficult time looking at screens- my cell phone and most importantly working on my laptop- Even if I’m doing good to start with, as soon as I open my laptop and start doing things, it triggers a woozy, nauseous head and then I’m miserable pretty much the rest of the day. That’s what I go through every single day.
This is my 2nd month of Ajovy, but somehow it is not helping with the light sensitivity.
Initially it was suggested I try Amitriptyline for this and it really did help initially. I’m on 10mg Amitriptyline but it seemed to have stopped helping.
I came here to ask you all if any med has helped you with the screen sensitivity?
This evening is particularly bad. I came home from work, had to go straight to nap to calm the head from getting worse but then came to work on the laptop and there we go again. I decided to try a triptan to see if that will help. It has been 2 hours since I took 5mg of Zomig but no difference. In fact headache is worse!
And this is with having my Macbook air on the lowest light setting, and wearing light filter lens over my reading glasses.
Please list some names for me to try for this screen or light sensitivity or “cyber sickness” whatever you may call it. I have this from morning to night. Alas
My Headache Neurologist just tried Ajovy on me, and after two months I couldn’t tell that it did anything for me. I was also trying Nurtec as a rescue med, and it worked well, so she is having me trial Quilipta (sp). I’m not sure how that’s going to help if I can’t afford either one though. On GoodRX Nurtec is $2K per month and Quilipta is $1K per month. I’m retired and can barely afford my meds as they are.
I noticed you said this all hit you in your 80’s. I’m 72 and mine hit me in my 60’s. I look back in my life, and even in childhood there were hints. I always got severely ill whenever I rode in a car or pickup. Larger vehicles like buses were better if I could get a seat over the rear wheels, but aircraft was as bad as cars. I never reached the bard bag point, but I got close.
In 2018 the wife and I took a cruise to Alaska. Before booking the cruise, I verified the ship took the inside passage so we would be on smooth water. The first day out, I knew I was in trouble because all I could see to the west was open ocean. I stopped one of the officers on the deck and asked if we were on the outside passage and he confirmed we were. The next day we had rough water and large swells. I spent that day facedown in the bunk with the lights off. I was miserable. Once we made port in Juneau we were fine. The remainder of the cruise I didn’t have any problems until the return leg. Once again we took the outside passage and I was sicker than a dog.
I told my wife that was the last cruise for me.
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