Starting off the day with that old familiar feeling of, hmm, I don’t feel quite right. I say I’m not working today and when I’m asked, “Well, why not?” I say I don’t feel well like the last time I was incapacitated for over a week. That in turn sparks an argument complete with yelling because they don’t get what I mean. You don’t have to get it, you don’t even have to pretend to understand it, just know that your yelling isn’t going to help me and make me stress out and potentially get worse when I’m trying to stave off worsening symptoms.
Yep, very few non sufferers ‘get it’. You look so normal. It’s an Invisible Illness. Personally I found the only people with any idea of vaguely how you might be feeling will be people who’ve had an incident of vertigo, ie bit of BPPV, or during bout of The Flu. The rest of the world, no way.
I found most of my friends just legged it. Didn’t know they could move so fast. Retrospectively I guess they were thinking I’d lost the plot and was in desperate need of some ‘happy’ pills to get me back on track. They were just friends so it wasn’t difficult to just let them go but if it’s close family or worst still colleagues. That’s a Difficult one though. All I can suggest is you find an article either medical paper or anecdotal case history that’s similar to your own and insist they read and inwardly digest it. (@naejohn - the other Renee - where’s that link I sent you for that doctor please). I’ve a few case histories bookmarked from UK press sources if you like. But better perhaps you find one that will appeal to tte individual(s) currently doing the yelling. Janet Jackson, you know, suffers Vestibular Migraine, has to cancel gigs. Any good?
Wow, didn’t know she (Janet) suffered as well. Thanks for the article and I can probably use it to refer people to.
My friends seem to be more understanding of this than my family. They think it’s all in my head. Well, technically it is, but it likes to go down into my neck as well. (Little humor there).
I’m actually feeling a little better since I ate (yay for eggs, avocado, and blueberries) and had some water and took my B2. I’m managing to work right now but I’m only doing half a day. Just in case.
But thank you again for being a breadth of knowledge and information.
Have a more thorough read of the migraine lifestyle change suggestions. Regular meals, some say four a day, are essential as is consistent and regular sleep patterns. Same goes for exercise. The condition likes consistency, order, routine. It appreciates a regulated regime. The nearer the same things are every day the happier it is. Boring for you and me maybe but migraine, and in particular MAV, resents change and will repay it with punishment believe me.
Yeah, you’re right. Sleep disturbances really screw me up. Thankfully I was able to sleep well last night. Night before I didn’t. I do go to bed at the same time and get up that the same time. My sleep pattern itself just changes so much.
For a year… I felt like I was literally going to lose what mind I had left when no one seemed to understand why I wouldn’t “just get better” by doing the epeley maneuver. So many people said “oh I’ve had that vertigo, just do the epeley and it will go away”.
My husband is precious… but he got to a point where he once said “Do you think it’s possible that this is just all in your head?”
My response was like yours… yes, it’s in my head but not the way you think it is.
He started going to Dr appts with me and that was really good for him to see something was very wrong… even though for a year all the Drs I visited couldn’t identify it. Finally, we saw a Otolaryngologist. A specialist in Vestibular issues and praise God he finally gave a definitive dx! My husband and I were like giddy children when we left his office.
So, here’s what I’ve learned… I couldn’t be mad at my family and friends for not understanding. How could they? It was invisible. Carrying the burden of the illness and feeling completely alone in it was rock bottom mentally and emotionally.
Engage them in any appts you may have and help them understand by educating them as you learn more about the illness.
They’re frustrated that they cannot help also… when you see someone you love suffering and there’s nothing you can do to help them… that frustration may come off as anger toward you but it’s really toward the helplessness they feel.
It was more I picked up on ‘the better after I’d eaten’ phrase but sleep’s the same. You catch my drift.
Really sorry to hear you’re dealing with the added stress of someone showing no empathy.
Throughout my journey with MAV I’ve learned that I need to protect myself from those who are negative, critical, or who doubt my condition. MAV in itself is tough enough - it requires perseverence, self-confidence, endurance; it’s like a long-term marathon in which you need to look after yourself well or your mental health will decline. Add in one or two negative or critical people into the mix, and the marathon becomes a nightmare. It’s ok to push these people further away from you, to protect yourself.
Six months into my illness my marriage broke up; at the time I felt very sad but I now know it’s the best thing that could happen to me. I don’t think I could have made it through the many months of MAV that followed otherwise. This example is a bit extreme but it’s really important to approach MAV – and your own suffering – with empathy, kindness, flexibility of mind, (and self-discipline!).
My mother is being the absolute worst today. Mentioned in passing that I’m a little dizzy this morning. She rolls her eyes and says, “There’s always something wrong with you. I don’t understand. When is this going to be resolved? What doctor can figure this out?”
Like wow, thanks. I’m trying to manage this and you come at me all snarky making me angry. She acts like it’s a curable thing. Except she refuses to read anything I tell her to. Why does she have to make things so difficult?
It’s crap isn’t it. I think there is a disconnect as they think you look okay, so how can you be ill? I’ve lost count of the times people have mentioned they had labyrinthitis and were dizzy for a few days and it was the absolute worst thing you could go through. If I pipe up and say I had labs and it triggered this, so I feel like that a lot of the time still, they simply don’t believe it. Even doctors don’t believe us. I had an ENT consultant tell me that if I had half the symptoms I said I had I would have committed suicide long since. Lots of GP’s and doctor “friends” and relatives tell me it is psychological and I need “to buck myself up”, that it’s like Fibromyalgia and CFS, not a “real” thing and if it does exist is episodic not continual. My Mother in law started to get a bit dizzy now and again in her late 70’s, her GP said she might have Menieres (which I was diagnosed with for many years) my Husband said , you know that’s what Sputnik has and she said “it can’t be that, it’s so awful, you couldn’t live, she’s just a shirker”. I could go on and on with anecdotes. I feel for you, the condition is bad enough without the put downs and disbelief. It especially cuts deep when your own parents won’t believe it.
Vent as much as you like here. Lucy is right you need to be really kind to yourself and I agree with Naejohn if you have a good doctor who believes in MAV then take your mum along if she will go to appointments. My husband finally “got it” when he came into a diagnostic appointment with me.
Thanks for the kind words. I’ve just been to the ENT yesterday, thankfully he believes me but has ruled out Menieres and anything directly related to my inner ear. Says it’s a combination of the migraines (haha obviously), my allergies, weather change and my cycle. Which I already knew. He suggested I see a neuro, which I’m seeing mine the end of this week to talk about how my symptoms have changed.
My mom doesn’t go with me to appointments, especially the neuro since it’s quite a drive at one of the large hospitals in my state in a big city, so she refuses to go, so I’m on my own, which is fine because she makes me nuts haha.
I am very thankful for this group though. Talking with people who understand certainly makes me feel less alone and that I can manage this.
I don’t think anyone can fully understand anything unless they’ve suffered it themselves.
@Renee love my mom to death but she’s a bit the same. A few weeks ago I heard the “ya know if you feel bad when you wake up, just get up and start moving around and you usually feel better”. I had to explain to her the more motion there is the worse I feel. I wish it was as easy as “just get up and start moving and your symptoms start to disappear”.
@Kara sounds like our mothers are cut from the same cloth.
Actually I found walking for at least 30 mins in the fresh air outside is required for things to get quite a bit easier. There were phases when it wasn’t the solution, but generally I have to tell ya, your mum is right! It’s far from a cure, and you can still be uncomfortable, but you can get rid of the worst of it that way. Unfortunately not everyone has an hour or two free that they can sink into a long walk every day, but it’s incredibly worthwhile as it helps you cope on more than one level.
@turnitaround I’m trying to find that happy medium with staying active and getting the rest I need. It’s tricky some days but if I over do it I definitely pay for it the next day or two. I do enjoy being active outside though. It’s when I feel my “best”.