I Need Your Opinions, Please

As some of you know, I’m still waiting on my appointment with the Neurologist that the Neurotologist recommended, and as some of you also know, I’ve been very hesitant to bite the MAV bullet, but that doesn’t mean that I’m closing any doors on the possibility.

The last time I was here, I shared with you that I was radically changing my diet, going completely vegan, on a 70% plant based diet. Not only did I do that, but I’ve stuck to it. I’ve had a little organic sugar here and there, but aside form that, my diet has been very clean. I also came off coffee completely. It took a while, but I did it. Having said all that, I waited to post again because I had been seeing some improvement and really didn’t want to post until I was able to say I was 100% better.

For the last couple months, things have been a bit odd. I started feeling a little better, bit by bit, but the symptoms never left entirely. About a month and a half ago, I had a horrid week, with non-stop violent vertigo, and I thought that was it. I thought I was going to die, and that my life was officially over, but it slowly went away and only a random blipped shows up now and again. Since then, things continued to improve, and I actually had some days here and there in which my symptoms were so mild that I thought I was finally making the final turn towards recovery. Everything was going pretty well, and then out of nowhere, just last week, my symptoms started taking a turn for the worst. I’m not as bad as I was at my lowest, but I’m seeing symptoms again that I haven’t experienced for a couple/few months, and I’m starting to feel worse and worse. I’m afraid of sinking right back into horrible, agonizing symptoms.

I don’t understand this. Nothing happened that would account for an increase in symptoms, and now I’m devastated. It feels as though all the hope I was starting to finally feel has been robbed from me.

What does this mean? Have any of you experienced an improvement, followed by an increase in symptoms, followed by another improvement? Should I feel as hopeless as I do?

Thank you, everyone.

Do you think could be attributed to hormones???

Mine tend to fluctuate all over the place and every 6 months the pattern changes a bit. Could be an answer??

Whatever the case, don’t take this as negative. You have shown great improvement.

The good spells should become more frequent and longer.

It’s a good sign. xx

Thank you so very much, MissMoss. I have no idea if it’s hormones or not. I never get worse before my period, so I always assumed that hormones weren’t as much of a factor for me. But truth be told, who knows. Could be.

Thank you for your encouragement. Feeling symptoms I haven’t dealt with in a couple to few months is just so disheartening and scary. I haven’t spent my days crying in a while, but I certainly have been today.
xo

Guess this is pretty uncommon, based on the lack of answers?

I actually think it’s pretty common. Certainly is for me. I’m great for a long time,. then have an “attack” for want of a better term, and am crap for a while, then improve. I think you just have to roll with it a bit and don’t give up hope. You got better before and will do again. You’ve made some improvements in your condition but perhaps you will need meds to top up your threshold and get this beast under control more permanently

good luck!

Hi, you are not alone!

I’m trying to stabilise my symptoms and I have stuck to the no nice food diet religiously even over Christmas not one chocolate passed my lips and I would usually eat about half a box for breakfast. Oh the good old days. I take the drugs and do all the vestibular rehabilitation excercises 3 times a day. I thought I was starting to turn the corner recently as I hadn’t had any major attacks for over a month. Then this week for no apparent reason I’ve been all over the place and in so much pain. It may of course be the exercises as they make you feel worse before you get use to them. But I haven’t been this bad with them so far.

It drives me nuts trying to fathom what’s changed or what I did differently. I’m beginning to suspect there may be a hormone link with me as I’m a lady of a certain age. Although I’ve had my bloods checked and they were negative, I do have other hormone related issues like an under active thyroid recently discovered.

You have made some great improvement! Hang on to that because you are obviously doing something that’s right for you. I’m beginning to realise this is a very individual disorder and what works for one doesn’t necessarily work for others. So it’s amazing what you’ve done.

I was also told to expect more headaches and strange symptoms as my brain heals and learns how to process things correctly again instead of firing of all over the place! By my neurologist but when I have a attack I seem to have selective memory too.

Keep positive!

Thank you, everyone, for your words. I’m just so down today. Strange enough, I’m worse today than I ever remember being. It’s not as though my symptoms completely disappeared during the last month and a half. I had a couple days here and there that were pretty severe, and my symptoms never completely left, even when I was feeling better. But things, over all, had definitely improved, and I remember thinking, “Okay, if this is the worst it’s going to be, I can live this way.”

I just don’t know what to think. I’ve tried to think of every little thing I ate/did that could have affected my symptoms, but I can’t think of a single thing. Again, I’m back to feeling like I’m stuck in a perpetual hell that will never end. If I can make an improvement, just to be back at square one, what does that say about this beast?

I don’t know if it’s a coincidence, but during the time that the vertigo improved, I was experiencing a new, very persistent headache. I usually don’t get headaches like that. Oddly enough, when the headaches eased up, the vertigo crept back in.

Thank you, again. You’re all a great support.

You will definitely improve again. In the 9 years I have had this condition, I have always tried to understand why it can slam you so hard when you have been feeling well. Migraine is an ugly beast - I’ve been 100% and then been knocked back to zero for no apparent reason. The best advice I can give you, is to try not to ponder on the why but focus on the things that make you feel better.

You will get better again, get a good diet and med regime in place and just understand that patience will be required.

Hi Guinevere, I’m so pleased to read that you improved after the diet, I’ve often wondered how you’ve been doing because you sounded so desperate for help a few months back. I think it’s totally normal to feel better one month and worse the next, this unfortunately is probably how many of us will be forever more unless you find a miracle cure! It’s also fine to cry and feel frustrated and sad during a bad spell, it would be abnormal not to want to cry!! You will get better again, it will pass.

What I think is interesting is what you said about the headache and dizziness not occurring at the same time. Much of the time that is exactly what I find. If I have a bad headache I can pretty much guarantee I’ll get a break from the dizziness for a bit. I read somewhere on the internet a while back that it is actually unusual to get the headache and dizziness at the same time. I’ll have to try find the link and post it.

Dear Guinevere–I’m so sorry you had a relapse with your symptoms. That must be terribly disheartening.

I can only echo what others have said, that ups and downs are part of the nature of the beast, and just hang in there for the better times.

I hope the neurologist you’re going to see will be able to help you. Hope you get a good one.

Take care,

Nancy

Have you ruled out weather systems? I’ll sometimes have a period when I’m off my stride, to say the least, and my wife will point out that this front or that front have been passing through, even if it hasn’t rained or gotten warm or whatever.

Thank you, all of you, for your thoughts, and for your encouraging words. I really need them right now. In the last week, not only have I gained back many of the symptoms that I put behind me (or thought I put behind me), but I have new symptoms, worse than anything I’ve experienced so far. I feel violently ill at times, and have a hard time walking, too. It’s not constant, but it’s happening throughout most of the day. It feels as though I just acquired a hideous stomach flu. I’ll get very nauseated and the movements, whether they be spinning or rocking, will get so powerful that I’ll feel like I can’t stand against it. It’s like every old symptoms was given a dose of steroids. It’s very, very scary.

The odd thing is, the really horrible new symptoms started Sunday night, after I had my head turned to the right for a few minutes. Before that, I wasn’t doing too bad. Once I turned my head back, looking straight, and I got up, the vertigo was so debilitating that I could hardly walk. It’s slowly lessened, but since then, it’s been ebbing and flowing. From bad to worse.

Aside from turning my head, which has never caused symptoms like these before, I have been stressed out lately. I have a surgery coming up—for something unrelated, of course— and I’ve been stressing, thinking that it’ll make my symptoms worse.

As for weather, I haven’t a clue. We’ve gone from mild temperatures to snow storms.

Thank you again. Hugs to you all.

Hi Guin
Were you lying down when turning your head to the right caused vertigo?

Could you possibly have BPPV now? It’s very common to have it along w/ MAV or so I’m told.

I was diagnosed w/ [possible] MAV about a month ago by an ENT. Before that I was diagnosed w/ BPPV which a PT took care of but about a week later the BPPV came back. I do a Dix-Hallpike to test every few weeks and every d**n time the spinning hits and I have to do another Epley. It recurs and recurs. What I have learned is that once the MAV is “under control” the recurring BPPV may stop recurring. I hope so because I dread w/ a capital D going to the PT for BPPV–in fact I won’t go anymore, I just freak out too much. I’ve been on 10 mg nortryptaline for about a month, for the MAV, it’s only sort of helping certain symptoms, and the BPPV still keeps coming back, but it’s early yet.

I too get symptoms that come and go, that morph and change, new ones pop up, all the time. I’ve had my condition for 6 months this time (4 months the summer before, when I think it was only BPPV). It truly does get us so utterly depressed when symptoms come back, change, get worse…it’s like a cruel punishment to think we’re getting better and WHAM, NOT! But remember, just like everyone else has said, you’ve gotten better before, had good days/weeks, it will happen again. I know it doesn’t seem like it right now but you will. (Good advice I need to listen to myself, because I’m not having a very good day either).

Hang in there, you’re not alone…

Hi Requin. Thank you so much for your thoughtful words.

I was sitting up when I turned my head. I was on my couch, body facing forward, while looking to my right, at my computer. I had my head turned for a few minutes, reading an article. I immediately got up and turned around to walk down my hallway, and the minute I stood up, the vertigo got violent, like I’ve never experienced (it wasn’t lightheadedness, either).

You’re very correct in saying that it’s incredibly disheartening when symptoms progress, especially after experiencing a milder period. I, too, have had this monster for six months, and it wasn’t until this last month that I actually let myself feel some kind of hope. I had also started doing things I enjoy again, and my every waking moment wasn’t spent thinking about vertigo. It really is soul crushing. But, I hear all of you loud and clear, and I’m holding out hope that things will improve again.

I’m so sorry to hear that you’ve gone through so much, too. It’s just a travesty to hear about people suffering with this beast.

Hi Guin
Well it doesn’t sound like BPPV, but then again what do I know, I’m no doctor!

I had a sort of similar vertigo episode while looking at the computer a few weeks ago. So I wonder if that’s what caused it for you. I was looking at the monitor but I was using my reading glasses which I normally don’t need for the computer. It magnified the screen quite a bit. I happened to look up after looking at the screen and wham the room SPUN! Awful and I freaked out. It was very short lived but I never had that happen before.

So I did a Dix-Hall to test for BPPV which was negative but then I did a Supine Roll test (lay on back, face up, then turn head quickly to right and/or left) when I turned to the left I had horrible vertigo, worst I ever had. Had a serious freak-out panic attack after that!! That’s supposed to be a test for horizontal canal BPPV but from what I’ve read/learned about that, it may not be what I have/had.

Anyway…I’ve been afraid to do that Supine roll test again…but I wonder in retrospect if the problem was using my glasses w/ the computer. We all know computer screens can do a number on our head when we have MAV (or other vest disorders). Normally I’m mostly ok on the computer.

So maybe it was the combination of looking at the screen and then the way you moved your head that caused the vertigo. Have you been ok since? No more vertigo attacks?

I know how you feel because usually when I have a bad vertigo attack I totally freak out and get really really depressed and discouraged. BUt it WILL get better. I know that the vertigo beast can hit at any time, and there’s actually times when it hits where I handle it like a real pro…don’t freak out just get on w/ things. Then there are the times it knocks me on my ar$e. But inbetween, there are reasonably good days.

I’m so sorry you’ve had this six months too. I try to remind myself that in the grand scheme of vestibular disorders, six months isn’t very long. Of course it feels like it. But there’s still hope we could recover from this mess, somehow, someday. I can’t give up on that hope, because if I do it’s all over. I do’nt want to live w/ this the rest of my life. I am 51.

Hi Guin
Another thought. Your stress and anxiety level are probably very high, really adding to your symptoms. W/ surgery coming up, and after having that horrible vertigo attack, you are no doubt on highest alert. That kind of panic and anxiety, for me, causes tons of vestibular symptoms all by itself. If possible, can you get your hands on something like valium, to just take to break you out of this cycle of fear and stress? We aren’t suppposed to stay on that long as it messes w/ compensation, but it might help you get out of this bad period.

Just a thought.

Hi,
Firstly, let me say how terribly sorry I am that you are in this situation. It’s not fair for any of us, and there really isn’t any rhyme or reason to it, as you have seen. There are things that are impossible to navigate…like hormone fluctuations, changing sugar levels, weather conditions, stress (even stress we don’t recognize as stress)…so many factors.
If the diet alone was’t enough to get you well, I would suggest a medicine. Which one will work for you is hard to tell, but it does give you a higher threshold, so that when things happen, you can keep your head above water. I was doing really great for about 2 years when I found a lump in my breast. I then got much worse as I was worried about it, and eventually things leveled out again. But something like that, even as many meds as I take, can still tank me.
Think “willow tree”…that moves with the winds as they come and go…it will be easier if you can flow into the patterns knowing that it is temporary, we all have them, and things will get good again.
Hugs to you,
Kelley

Again, everyone, you’re all so wonderful and supportive. It really means a lot to read all of your messages, and to know that I’m not alone. This is a horribly depressing feeling, going through the worst of it again. But knowing that you’ve all experienced such things and have come out the other side—at least doing a little better—is uplifting.

I agree that my stress level may have played a part in my symptoms progressing. I was more stressed out than I realized. It’s just so difficult to keep tabs on every little thing that can affect our symptoms. It’s exhausting. All I know is that changing my diet and giving up coffee seemed to help the most. As for this blip (I’m hoping that’s all it is), who the hell knows what caused it. I just thought I was past the worst of this crap, and now, I don’t know.

I will keep all of your words in mind. When things get a little too heavy, I’ll remind myself of everything you’ve all said.

Big hugs to you all.