Massive Change. Please Help!

Specific Illnesses & Conditions VM/MAV
1

As some of you know, I’ve had symptoms for over 7 months, and I’m still waiting for my appointment with the specialist. I’ve experienced a massive crash in the last week and a half, worse than I ever could have imagined. I thought I knew what bad was before, but this…this is HORRIBLE!
What concerns me is the drastic change in the presentation of my symptoms. I’ve had false movement: rocking, sliding, rolling, falling, spinning, etc., for 7 months, but what always made me feel a little better was being in motion: driving, walking. But since this last crash, everything has reversed. If I lie still and don’t move, I feel a little better, but the minute I move or roll over, everything rocks and spins and I want to vomit. What’s most concerning is walking. All the sudden, I can hardly walk. I feel so incredibly motion sensitive that just walking makes everything spin and rock. The feelings of movement are terrible, and I’m genuinely dizzy when I’m up. If I stand or walk, I feel like I’m going to vomit and pass out, due to also feeling so lightheaded. And turning around while walking? Forget about it. Feels like I’m going to die. This is constant.

What can explain a sudden change in presentation?

Thank you for your thoughts.

2

Hi Guinevere

This probably isn’t going to be helpful and I can’t really answer your question as to why there has been a massive change but what I will say is that such changes do happen with MAV. Sometimes the feelings can be quite violent as you describe, causing fear and making you wonder what on earth is happening. At times, I’ve been terrified too and I’m sure I’ve made matters a lot worse by letting my imagination run away with me, it’s inevitable that that happens.

As time has gone on, I tend to be more pragmatic and philosophical about it all. These things tend to go in cycles of varying amounts of time and are usually self-limiting. Knowing that is no help at all of course once you’re in the middle of a dramatic sudden change of symptoms but it may help to remember that if you are able to but I emphasis again it’s mightily hard to do that when you’re suffering so badly.

Can you think of anything you did that was different? Ate differently? Sleeping patterns? Stress? Some physical action you did? More anxiety than usual? (I know, a daft question but you get my drift). Any clues at all? Are you doing all the basics - to help speed up an improvement?

Sorry, I don’t have time right now to look through your history, so forgive me If I’m going over old ground but I saw your post, felt your dismay and wanted to respond to try to make you feel a little less alone, if nothing else.

Wishing you the best…

Brenda

3

Thank you so much, Brenda. I’m doing all that I’ve always done to help myself. I eat a plant-based diet, I gave up coffee 3 months ago, and I drink water like a fish. I’ve been sleeping normal; I’ve not added any new activity (though I’ve always worked out), and stress has been, well, I guess a little higher than normal, but not so great that I would assume it’s the culprit. The only change I can think of is that I’ve slowly been coming off the e-cigarette, though I’ve been tapering down the nicotine levels since this all began, and I never experienced a reaction like this before. Right before crap hit the fan, I lowered the nicotine levels again, and to practically nothing. Most cigarettes have 18 to 24 percent nicotine in them. With my e-cigarette, I’m only using 3 percent, which is as low as you can get before 0%. Aside form that, there’s nothing that can account for this change.

I’ve never been so terrified. I literally feel like I’m dying, and I honestly can’t see being this ill without an inevitable death at the end. Dramatic, I know. But that’s how bad I feel. I just don’t understand. For 7 months, I understood the nature of my symptoms. But now, with things suddenly changing, I have no idea what to expect, and you’re right; I am expecting the worst. I have two young children and a husband in the military. We’re coming up on a move and I just don’t see how I’ll manage everything. I do expect this to pull me completely under and never let me back up. But I will try to remember what you said: that things do get better.

Thank you so much.

4

Hi again, Guinevere, gosh, I didn’t realise you had two young children, a military husband and an imminent move. No wonder you’re struggling! That’s some pressure, even if they’re the best husband and kids in the world! Honestly, I’ve had days, often strung together ie prolonged times, when I’ve felt pretty much all in, finished, no hope etc but I’ve lived to tell the tale! I’m not making light of things but sometimes you just have to somehow talk yourself up and into believing things will improve. It’s not easy but it is possible.

Now, I’m not saying to ignore new symptoms, or old ones that really take an inexplicable turn for the worse - that would be foolishness but this condition is so brilliant at times at making you feel so anxious and awful that you simply cannot believe it’s ‘just’ MAV. There is no JUST about MAV at all.

You say “I just don’t see…”, “I am expecting the worst…” “I do expect this to pull me completely under and never let me back up…” Please try to expect the best, and not the worst. Talk positive, not negative. Tell yourself, this will NOT beat you. There is a time for resting and not fighting, for sure, you can wear yourself trying to battle with things all the time, but can you see what I mean, where I’m coming from?

Please don’t misunderstand me, I feel your pain and your fears, but wherever possible it might help to not overthink this one, sometimes there is no rhyme nor reason to MAV. Easier to accept it is what it is and then do all you can (as you seem to be doing) via lifestyle measures, meds etc.

And whenever you feel overwhelmed just sound off here, there’s always someone to share the journey with you for a while, to hopefully help as and when they can.

Take care

Brenda

5

You’re so sweet, Brenda. Thank you so, so much. Despite not feeling very hopeful, your letter made me feel a little better. Sometimes you’ve got to survive off of other’s positivity, and right now is one of those times.
Thank you for taking the time to talk to me, and for making me see things from another perspective. I will most certainly keep your words in mind.
Big hugs.

6

I will second Brenda’s advice.I know it’s really hard but sometimes we have to just try and roll with the punches. I’m in the middle of a massive crash for which I have no explanation other than hormones (not much I can do about that). IT is frustrating and cranky making after doing so well for so long. But y’know shit happens with this annoying condition. I know I will get better again, although after two weeks of full on symptoms it is trying my patience :smiley: . But I know I will come out the other side.

Again, not much help really but just wanted tyou to know that this kind of bump (er mountain!) in the road does unfortunately happen to all of us and we can’t always say why, but the road will level out again :smiley:

7

Lorcalon, thank you, too, so much. All the support is a great help to me, particularly right now.

8

Hi Guinevere,

Firstly, Brenda is wonderful and so right. This is a nasty debilitating disorder at times and can leave you bereft of all hope, but I will reiterate the soothing words of Brenda and tell you that you will get through this, you will be ok and you have the okay from all of us to scream your lungs out, cry for your life and kick the neighbours cat, that keeps crapping in your garden, up the arse! Sorry bit of humour there :smiley:

This is just for now, remember that! Just for now! Go with it, don’t add the burden of anxiety if possible, this is a known antagonist. Try to focus on something relaxing, music or breathing slowly. One tip I will give is to slow down. I will hazard a guess that you’re doing everything at 100 miles an hour at the moment. I don’t blame you, I’ve been there. It’s terrifying. Is there anyone that can come over? Give you the comfort of someone being there with you. Do you have Valium at all? I know many of us have used it at times like this. To take the edge off the symptoms. It’s a known vestibular suppressant as well as an anxiety reliever.

You sound like you have a hectic and stressful event coming up that will have definitely have added to the burden of being a temporary single parent while worrying about her husband in the forces. This is huge! Not to mention trying to come off of nicotine. Readdress some of these issues if you can my lovely. In my opinion this is a heavy load waiting to topple!

Big hug

Bev xx

9

You’re so sweet, Bev. Thank you. Right off the bat—because I don’t want to lend the wrong impression—my husband is here, at home with us, and he’s very, very supportive and picks up so much of the slack caused by my feeling this way. But I do have a lot of contributing factors that add to this already stressful situation. I have many other health problems, one of which has gotten to the point that I’m going to need surgery very soon. Of course I’m stressed about that. I really scared that going under will worsen my symptoms. Also, I home-school my kids and, while I adore it, I stress out almost daily, scared that that will be the day I won’t be able to do my job and properly educate them. Our current duty station has terrible, awful schools (unsafe), and we simply refuse to send our kids there. As for family, we have none, so there’s no outside help.

These last 7 months have just been hell, and to see such a rapid progression…I don’t know. It can really leave one feeling hopeless. I keep waiting for that magic day, when I wake up and am suddenly better…or at least greatly improved.

Thank you for the comedic relief, Bev. Maybe I’ll find a cat to kick around, lol. Seriously, though, thank you very, very much for your words. All of you are so supportive, and I know you understand this monster. I so appreciate you taking the time to write to me and to share with me that this, too, shall pass.

Big hugs to you :slight_smile:

10

Lorcalon, can you say more about the influence of hormones? Although I’ve been suffering with this for 3 years, it’s only been recently that I’ve stumbled upon MAV and BPPV as the problem. I’m trying to narrow down the triggers. I’m 59 and in menopause. Thanks!

11

Hi again Guinevere,

Sorry to presume honey, that’s me, off I go on a tangent! Glad you have your lovely husband to help. How’re you feeling today? Any better? I hope so. This VM can really take over your life if you let it…in fact it’s stolen a big chunk of mine! But I’m hopefully getting on top of things now. I’m on 225mg Lyrica with the option of going up. I still have daily head symptoms - full of air/pressure/water and am having tiny visual vertigo spins but no actual vertigo for 3 months. I ate feta cheese last night, my Dr said I can eat cheese if it’s not from the cow…feta isn’t right?? Or have I just blown the diet?! :roll:

Big hugs

Bev xxx

12

Thank you, again, Bev. And sorry for the delay in my response. To answer your question: no, I’ve not been better. Things are still escalating for me, and pretty rapidly. Funny how I went 7 months, trying to get used to the various forms of vertigo, and then now, BOOM! It hits me with a whole new level of severity, and new types of vertigo. I don’t think I’ve ever felt this down or hopeless before. Every single day brings with it new, more challenging symptoms. What scares me most is that if this doesn’t let up, and if it continues progressing at this pace, I’ll be bedridden. It’s not a mater of opinion, it’s just fact. But I’m trying like hell to remember what you all have said, and to remind myself that this too shall pass. Here’s to hoping that my surgery at the end of this month won’t make things even worse. I’m so afraid of what the anesthesia will do.

Big hugs to you, too. X