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Need encouragement from those who know


#1

I’ve been diagnosed with MAV in 2015. It’s all in an earlier post so no need to put it all here.
For me, my symptoms always increase July - December so not too surprised when it started rising again. This Fall it’s still rising. There’s been way more dizziness, nausea etc causing me to leave work early etc. Living in the Northeast with the warm humid conditions so bad this year, I thought this may be why. Now into cooler weather, it’s not receding.

I wasn’t feeling great last night going to bed then at 1 am, I rolled over and the pressure waves, nausea, headache, anxiety all flooded in. I was afraid to get up to get meds (meclizine) that the vertigo would start. Luckily my husband was willing to get it. The symptoms have subdued but JUST A LITTLE. I took more meclizine at 9:30 and probably another soon. I have tried to lie down but that makes it worse. Needless to say I am very scared :disappointed:

I have been careful with diet, eliminating even more foods to try to back this down. I seem to also become more sensitive with lights or something that are in the grocery stores, doctors offices and the motion of elevators even???

I have an appointment on Nov 6 with the Dr. who diagnosed me but I needed to talk to people who know what I am going through.

Thanks, Tracy


#2

Ah bummer, sorry to hear its flaring up again. Does it help to lie down or sleep on an incline? Do you have some tinted glasses to deal with the harsh lights? I just picked some up on amazon for $10 bucks, they are great. Hang in there, it will get better again soon I hope. :grinning:


#3

Sleeping on an incline is better. Do the glasses have a special name? Thanks so much!!


#4

Check the member recommended products page and scroll to the bottom.

They basically look like yellow safety glasses. It seems if you want stylish ones you will need to pay more…

Also, maybe some ginger honey tea will help settle your nausea. Take care


#5

Thanks :grinning:


#6

We all understand the fear @Teascone, i wake every single day and my first thought is “what will happen when I sit up” or when I shower, or or or… so many thoughts and anxiety! I try to be positive all the time, which is my nature… but this is always a struggle for me to do. You’re not alone, we are all fighters and I believe :100: that there is a light at the end of the tunnel!


#7

Hi Tracey

Acute attacks are really horrid, and can be quite scary. Try to remember MAV loves to feed on anxiety and then a downward spiral of emotions set in. And everything then appears ten times worse. What you have to keep saying to myself is ‘This is temporary. It will pass, and I will start to feel better in a while’. It’s also worth reminding yourself MAV symptoms morph, they can change from day to day. Much of our fear and anxiety always stems from fear of the unknown. I quickly found it’s better to have some idea if what might happen and why. That takes the fear away. With MAV at least it’s not life threatening. It won’t kill you and you aren’t going to read that it is anywhere so bit of research won’t be scary. I’ve always found it reassuring when something apparently weird happens seemingly out of the blue to be able to say to myself ‘oh, that’s because …’, rather than panic about it. After all it’s ‘just’ an - albeit frustrating and debilitating - disorder with symptoms. It’s nothing supernatural. It’s natural for symptoms to change as time goes by.

Dr S refers to MAV as a ‘migraine variant balance disorder. Try to get to understand the human balance system better. We are woefully ignorant of all things medical most folk, until something goes wrong! I know I was, Our dizziness is a sign our balance system is struggling. Your current problem with escalators occurs because your brain is placing extra reliance on your feet’s sensitivity for balance, and the escalator just altered their ability to serve your brain. You’ll probably find cannot walk in high heels at the moment either, same reason. When we have MAV, we have migrainey type symptoms that hang around us all the time which indicates our balance system is hypersensitive, another symptom of which is light sensitivity, visual vertigo, aka ‘grocery store syndrome’ are all common symptoms.

Just hang in there. I suspect the consultant will give you some meds to help on Nov 6. Not long to wait. Good luck. Helen


#8

Helen,
Thanks so much for your reply. You are correct in that I am not aware of “what could happen” it’s good advice. The high heels comment makes me giggle!!
Tracy


#9

@Naejohn, I too am in the anxiety world of What May Happen Next", I need to work on my anxiety. You are relatively new to all this, how are things going with you?
Tracy


#10

Well, thank goodness, you can still giggle. With MAV a sense of humour comes in most useful, believe me. I once made a locum doctor burst out laughing. I was really acute, Home Visit Doctor, was conducting Epley on me and I’m dangling backwards off the end of my own bed with my head in his lap as he kneels and, noticing some dust and fluff under the bed, I made some comment about somebody needing to do some housework around here. He shook with laughter.

In all seriousness the way our balance system works is really fascinating, or at least I think so. And I certainly found it very helpful to be able to account for my various symptoms. Helen


#11

Hahaha you do have a sense of humor :grinning:


#12

Did you ever use a preventative med you can try Nortriptyline/Amitriptyline only on your problem months. Also makes sure your allergies are under control.Good luck with your doctor appointment.


#13

Hi @Teascone, I am doing better all the time (I think :laughing:) In retrospect, I know I’m am doing better… to Helens point about high heels, I can manage to wear them for a meeting while having my flats in my handbag at the ready… these are big steps considering even barefoot at one time was too much to ask for. So, while I’m nervous as a cat and worry a lot… I am functional and happy for small tiny teeny little bits of progress. I keep my expectations moderate now having learned this is something that is more of a “long haul” rather than the quick fix of BPPV which is what my first diagnosis was. All the best to you!!!


#14

You are so right, MAV’s the Long Haul, but I don’t know about there being a Quick Fix for BPPV either. For some maybe the Epley or similar works. Maybe but I’ve a friend who has had BPPV since she was 24 and she’s -undisclosed, but it must be approximately- 70 now, and still gets it, getting in/out of bed or if she lies flat for any reason, and occasionally, for no obvious reason. Just happens. Maybe she’s got overactive crystals in her ears. Oh, and fairies at the bottom of her garden too! Helen


#15

You know, that’s so true… when I was first seen by my dr, answer was “go home and do the epley… 2 months of doing the epley, still no relief (oh by the way, doing both sides since no one could figure out which side was affected)… go to the ENT for next 3 months, every time… they do the Hallpike and tell me “go home and do the epley”. Everyone I meet says “oh I had vertigo, just do the epley and it will go away”. So, while it may be a quick fix for some, it’s certainly not all.


#16

@GetBetter I am not familiar with those drugs. These are some questions I hope to talk to Dr. about. Up until now I’ve only needed a few doses of Meclizine to get me through. I have been extremely lucky.


#17

Thanks @Naejohn! I’m glad to hear you are doing so well. I so well understand the nerves we all deal with, sometimes they themselves can be so overwhelming more so than the symptoms of vestibular migraine :worried:
I am happy to say this evening I feel a little bit lighter. The symptoms have lifted some and it feels great!


#18

If your diagnosis lands up being vestibular migraine you might need drugs if only diet, lifestyle and exercise does not help. There is a flow chart at the bottom of the below page. You can start with magnesium, b2 and coQ10 supplements.

https://www.dizziness-and-balance.com/disorders/central/migraine/mav.html


#19

Well, I had ten years of that. I’ve had more Epley than hot dinners! Interesting, from exp. I’d say there’s a technique to Epley, many lack. It felt different almost every time and when they approach, with written instructions in A4 in the other hand, best tell them not to bother even trying!

You seem to have been lucky so far, yr balance can still reset itself eventually. I think that’s best time to jump on it hard if it is MAV. once it turns chronic, it’s a bigger beast to treat. Now is the time to enforce strict new diet/lifestyle changes and meds. Less time you’ve had it quicker you might kill it off. Ask @sputnik2 what the eminent expert in UK Dr S said. Think of @janb she’s well on the mend and she’s only had MAV six months, saw the eminent Dr S and doing great. If I were you I’d jump on it now, good and hard. That’s your best chance. Once it turns chronic, it’s an entirely different ballgame! Helen


#20

Definitely agree with Helen @Teascone - jump on it hard. I have been lucky that I saw Dr S quickly however, I am still having bad days - today being one of them where my head and ears feel under pressure. That said a bad day back in June before I saw Dr S was being stuck in a chair wondering what the hell was going on so I shouldn’t complain. I hope all goes well for you on 6th Nov? :slightly_smiling_face: Jan