I was afraid of experiencing rotating vertigo, but to tell the truth, I didn’t think it would actually happen. But for a week now, I’ve been experiencing a progressively worsening slow, rotating vertigo. When it first began, I only felt it with my eyes closed, but now it’s with me all the time, and it’s growing stronger. I’m constantly rotating, either to the left, or to the right; yes, it changes directions. If this keeps up at this pace, and keeps getting stronger and a little faster each day, I have no idea what I’ll do. Also, it’s effecting my vision. The rooms rotates with this.
I experience this all day long and I have to fight it really hard. If I start ‘moving’ to the right I will physically pull it to the left with my eyes. Its a skill and very exhausting after a while. Stare at a spot on the wall for a while to try stop it. When I close my eyes (happens every night) I spin. Can feel my world spinning round me. That one is difficult to stop but I fight it all the same and must fall asleep. I physically try and stop the spinning with my eyes by pulling them to other side.
I hope this makes some sense to you and I so hope that the full blown vertigo doesn’t come for you.
Angela
Angdunc, do you experience the spinning vertigo all the time, even when walking, sitting up, standing still? Or is it just when you’re laying down? Also, is yours slow, or fast?
Mine is slower, but is gaining strength and speed, and I feel it ALL the time. It’s less obvious when walking, but it’s there every moment, and one very strange aspect of this is that it changes directions. I’m not sure what causes it to change yet, as in, is it something I’m doing. But every 10 minutes or so, or less, it will change directions. I’m still having the rocking, dropping, swaying vertigo, but it almost seems—and I hope I’m not speaking too soon—that the other sensations have died down some, while the spinning has increased. Almost like the spinning has replaced the other sensations, but not entirely. And the spinning acts in the same manner as the other sensations did/do. Last night was the first night that the spinning woke me from a dead sleep. Every time I turned over in bed, the spinning got severe, as did the nausea.
Also (last bit, I promise), Monday morning, I had full on vertigo. Luckily my husband was home. I went from having the slow rotational vertigo, to having severe spinning. When I looked up or down, or stood up, the spinning got terrible, and I could barely stand on my feet. That lasted for about an hour or so, and then I had my husband do an Epley Maneuver on me. I have no idea if the Epley helped, but within 20 minutes of doing it, the severe spinning died down to the slow spinning. Of course, what I fear is that what happened Monday morning will become my new normal. I have no idea how I’ve made it this far without losing my mind, but if the severe, fast spinning becomes my new baseline, I have no idea what I’ll do.
GJB, Have you tried a benzo like Valium? I’m wondering if that might help as a vestibular suppressant. Might be something to discuss with your doctor.
Also, has auto-immune disease of the inner ear been ruled-out? Have you noticed any hearing loss?
I’m so sorry you’re experiencing this right now. Please keep us updated on how you’re doing…
Hello, Kennedy. Thank you for the post.
As for the ears, it doesn’t appear that I have any problems going on. I’ve never had any ear symptoms throughout this ordeal, and my hearing, EMG, and caloric testing was normal. In fact, the Neurotologist said my hearing was excellent. I’m assuming—and please tell me if I’m wrong—that, had there been something wrong with my ears, something would have shown on the test? My husband was reading about LABS, and he thought it sounded a lot like what I’m going through, but wouldn’t something have shown up with the testing (caloric)? Mind you, I didn’t have the testing done until almost 9 weeks into this, so maybe my ear healed, but I haven’t compensated yet? Still, that doesn’t make too much sense either, because I keep getting worse. From what I’ve read, uncompensated LABS will slowly improve—not progress. But, again, please tell me if I’m wrong.
I haven’t tried any medication yet, including valium. To tell the truth, I’m really afraid of heading down that road. I’ve heard and read about too many horrible side effects, and I’m afraid of developing a dependence. I’ve never had a problem with addiction; I don’t even drink alcohol because I don’t like the way it makes me feel. But, never the less, the idea scares me. Antidepressants really scare me. Years back (for problems unrelated to vertigo), I tried paxil. Truth be told, I never should have been given medication, but I was too uneducated to know better (I wasn’t depressed, nor was I anxious). I took it and nearly lost my mind. I developed terrible anxiety attacks, intrusive, obsessive thoughts, and when I didn’t feel like I was going crazy, I didn’t feel anything. I HATED it! Can’t emphasis enough how awful that experience was, and I swore then that I’d never, ever take an SSRI again. I only took the paxil for a couple weeks, but it took me 2 years to get my life back on track. That’s how badly I reacted to that crap. It turned my world upside down in every conceivable way.
GJB
Sorry you’re going through this. However, I would urge you to get onto a preventative. You can start low and go slow. That’s the key for migraineurs. There’s no detrimental affect to low and slow so a doctor shouldn’t have a problem with you doing that.
I understand the reluctance to take drugs after your bad experiences but the right drug could really help you.
MM
I really understand your reluctance to try benzos due to a fear of addiction. Discuss it with your doc, of course, but my understanding is you won’t get addicted if you take a low dose for a short period of time… Maybe just try it for a couple of days and see if it gives you your life back. If it doesn’t help, at least you can mark it off your list.
I’m just like you; antidepressants make me nuts-o! Valium will have just the opposite effect. Many people with vestibular issues (MdDS, Meniere’s) use a benzo during times of increased symptoms, and it gives them great relief.
When the doc first suggested I try a week of Klonopin, I was just like you and refused to take it. After suffering month after month, I now take 1 mg Valium (a pediatric dose) a couple times a week, and it seems to really help. I have no concerns whatsoever of getting addicted at such a low dose and with sporadic use.
I’m certainly not trying to talk you into doing something you don’t want to do. However, I just wanted to point out another point-of-view. At some point, many of us give up on the idea that this “thing” will just go away on its own and look for proactive steps to intervene and ease the misery. (Of course, I am not saying that people never get better without doing anything, but after a while, you need to consider that as a possibility and evaluate all your options.)
Oh, and I wanted to mention that like you, my problems progressed daily for about 11 months before leveling off. I asked one specialist which diseases or issue can do this, and he mentioned only auto-immune disease of the inner ear, microvascular compression of the 8th cranial nerve and one more that is escaping me right now. I’m not sure I agree completely with this, but I am just passing on what he told me.
Kennedy, I am curious about the valium. You talk about finding relief with it, and how it has helped you. Is it the only medication you’re on? You said you only use it every couple days, or so. Does that mean that it helps alleviate your symptoms for days at a time? The impression I was under was that it’s something you have to take every day, and when you stop taking it, the symptoms will still be there, as ugly as ever.
I guess, in other terms, I thought it only temporarily treated symptoms, as opposed to helping “heal” the MAV, for lack of a better term.
Thank you, again. I think I’d be open to something that I didn’t have to use on a daily basis. But at this point, I’m bedridden, my head is spinning all day (on top of the other sensations), and I’m incredibly nauseated all day long. I really am feeling like this might kill me, and I need to do something to make this stop.
I think Valium does just mask whats happening, it doesnt help heal mav, but it can help with true spinning attacks when they are full blown or doctors appointments, its handy to have on hand even if you never use it.
As ford preventatives i am on verapamil now and although my spinning is no better, my nausea is better and i noticed when i recently came off it it slowly had stopped my rocking and blocked ears and sound and light sensitivity. I am extremely med sensitive and struggle with the meds but without them i am completely bedridden with a killing head 24/7 just wanting to die. For me this got to the point i was in the dark and couldnt move so i had to continue with meds and now i can never not have one in my system, otherwise i land myself in hospital. Mav can get seriously bad for some people so looking at attempting a med would definately be something i would recommend and try and be as active as possible, this lways helps me physically and mentally. Maybe trying verapamil is has the lowest side affect profile u will find for mav nearly would be the way to go and its the only med that hasn’t changed my mindset like other meds have. True spinning is terribly tough i recently spent 36 hours not being able to move due to spinning so bad, i was lucky i had Valium which allowed me to get up to go to the toilet with a walking frame, that true violent spinning I doubt lasts for weeks for me those your body manages to overcome the severe violent attacks nd brings back to slow spinning.
— Begin quote from “GJB”
Kennedy, I am curious about the valium. You talk about finding relief with it, and how it has helped you. Is it the only medication you’re on? You said you only use it every couple days, or so. Does that mean that it helps alleviate your symptoms for days at a time? The impression I was under was that it’s something you have to take every day, and when you stop taking it, the symptoms will still be there, as ugly as ever.
I guess, in other terms, I thought it only temporarily treated symptoms, as opposed to helping “heal” the MAV, for lack of a better term.
Thank you, again. I think I’d be open to something that I didn’t have to use on a daily basis. But at this point, I’m bedridden, my head is spinning all day (on top of the other sensations), and I’m incredibly nauseated all day long. I really am feeling like this might kill me, and I need to do something to make this stop.
— End quote
Hi,
2 things-
-
I also take a low dose of valium when things get tough. I find it helps slightly but more psychologically, in that it makes me care less about feeling so terrible.
-
I try but I really struggle to empathise when someone says that they are bedridden and can’t function but refuses to take a daily drug. When I was that bad, I would have swallowed anything to get better.
Some people have managed to get well without meds, Brenda for example, but I believe this is quite rare. Great, if it works for some people, but it aint working for you right now.
I just don’t get the logic- stay in bed hoping for a recovery, or take any one of a number of drugs that are tried, rigorously tested so that no harm will come to you, and potentially get your life back.
You also have the support of all of us here.
I am also surprised you’d consider valium or a benzo which you’d use episodically over a daily preventative. Benzos as a classification of drug vs beta blockers for example are much more of a ‘harder’ drug.
I don’t wish for this post to come across as mean, I just urge you to be brave, trust the doctors and take the first steps in getting your life back.
Sure, lifestyle, diet for some, and other factors like neck issues can be addressed and help to beat this beast, but there is no doubt whatsoever that the drugs work.
Good luck. x
I appreciate your honesty, and I don’t think you’re being mean. I just thought you were saying that an occasional valium had been all you needed to recover as you have. That’s all I was asking.
As for having a hard time understanding why someone like me would be hesitant to start medication…well…I can’t speak for others, but for me, you’d have to understand what I went through when I took Paxil 11 years ago. Much of what I experienced is too personal to share, and I’ll not get too deeply into it, but I can tell you that—hands down—the reaction I had to Paxil was every bit as horrid and terrible as what I’m going through now—only it manifested psychologically, as opposed to physically. I don’t agree with the statement that, because medications are tested, no harm can come to the user. Either way, God forbid I take something and suffer another massive blow, only to not be cured of the vertigo, which sounds very likely, since most people have to trial several medications before finding one that suits them. I’m struggling severely right now, but what I know I can’t handle is dealing with this AND another severe reaction to an SSRI. That is why I’m hesitant, which is not to imply that I’m refusing, though. I have no doubt that I will try a medication, but I’ve also not been offered one, yet. The doctor wants me to try the diet, which I’ve been doing.
Having said that, I understand your confusion. I really do. But, as they say, until you’ve walked a mile…
As for you saying that very few people get better on their own, you may very well be correct, and in my current state, I’m certainly inclined to believe that. But if I’m being objective—playing devil’s advocate—there are plenty of people who have dealt with issues like mine and who never got online to talk about it, or who never stuck around this site, because they got better. Many here believe that people diagnosed with LABS ultimately have MAV, and therefore need a migraine preventative, but you could argue that people with LABS, and who also eventually recovered, did have MAV, and somehow recovered without intervention. Just food for thought.
Above all else, if I felt confident that I had MAV, I think I may have started a medication already, but I’m not all that confident yet. Not because I’m in denial, but because in all the time that I’ve read these posts—and I’ve read hundreds of them—I’ve not come across too many people who have my symptoms. Sure, when I initially developed them, they sounded more in line with MAV, but as they progress, things don’t seem to be adding up. And it’s so hard, isn’t it. Because there’s no test for MAV, no way to prove that MAV is the culprit. But that’s the way the cookie crumbles when dealing with diseases/disorders of exclusion.
Again, I thank you for your thoughts, and I certainly am open to all opinions.
No need to start with another SSRI if and when you decide to try another medication. There are plenty of other meds in other classes that could be options for you. Taking any med is a risk vs. benefit scenario - yes, bad things can happen. They have happened to me too. It’s an unknown and it’s hard to bite the bullet especially in the beginning. That is a decision you will have to make for yourself. If you are not confident in your doctor’s diagnosis, you have every right to get a second opinion. If it is within your ability, maybe you could set up an appointment with one of the “big guys” in the field that is listed on this site.
Also, I’m not sure if this applies to you, but if you have any anxiety, it can and will feed into the dizziness. It is crucial to get the mental under control along with the physical or else recovery can be delayed or prevented. Like I said, I have no idea if this applies to you, but it is something to consider.
Dizzy, thank you for being so understanding. Yes, this is all very scary, and I’m tackling it the best I can.
You mentioned anxiety, and while I’m not having anxiety attacks, I am constantly full of anxiety. I don’t know that I was all that anxious when this first began, as I thought it would pass. But I’m definitely nervous and scared and anxiety ridden now. I wake up nervous and scared every morning, afraid to see/feel how far things have progressed over night. So, yeah. You could say I’m dealing with anxiety…and a lot of it.
— Begin quote from “GJB”
Kennedy, I am curious about the valium. You talk about finding relief with it, and how it has helped you. Is it the only medication you’re on? You said you only use it every couple days, or so. Does that mean that it helps alleviate your symptoms for days at a time? The impression I was under was that it’s something you have to take every day, and when you stop taking it, the symptoms will still be there, as ugly as ever.
I guess, in other terms, I thought it only temporarily treated symptoms, as opposed to helping “heal” the MAV, for lack of a better term.
Thank you, again. I think I’d be open to something that I didn’t have to use on a daily basis. But at this point, I’m bedridden, my head is spinning all day (on top of the other sensations), and I’m incredibly nauseated all day long. I really am feeling like this might kill me, and I need to do something to make this stop.
— End quote
No, the valium does not do anything for an extended period of time. Like Miss Moss, it helps me not care so much what is happening, which is a great relief in and of itself. The other thing is does is helps me sleep quite soundly. I always feel much, much better after a good night’s sleep, whether it be with the assistance of an anti-histamine, muscle relaxer or benzo. The ground feels so much more stable the next day.
Further, I have read many, many accounts of people with Meniere’s who have severe rotational vertigo who swear that taking valium helps to shorten the duration of the spins. It was the first thing I thought of that may help you to get a hold of the rotational vertigo, which is probably one of the scariest aspects of this “thing” for you.
Also, have you tried Phenergan? For me, it is the only thing that helps on my high-nausea days. It’s an anti-histamine, I believe, that is used for nausea, anxiety and will also help suppress vestibular problems. It is a fairly benign drug to trial and see if it helps you at all.
I agree with the other posters that if you decide that MAV is the appropriate diagnosis for you, you should consider trialing some preventatives. However, in the meantime, until you figure out what exactly is causing your symptoms, you may want to experiment with low-dose valium and Phenergan and see if they bring you any relief. Be brave and proactive. Don’t wait around to see how far you deteriorate before trying some things that may help. There are other drugs to try besides SSRIs.
Thank you, Kennedy.
Actually, I do have Antivert and Zofran (Zophran)—not sure of the spelling. I’ve used the Antivert, and while it helps some with the nausea, it doesn’t seem to do a thing for the vertigo.
You’re correct in saying that the spinning is horrendous, but what I’m really struggling with now is the constant progression and change in the vertigo sensations. While the spinning is still constant, I never know what each day will bring. I might be terribly nauseated for days on end, and then it might let up a little. And in the last couple days, I’ve been experiencing a number of new sensations, such as a slow, non-stop falling back sensation, or falling forward, but it’s always accompanied by the spinning, and a slight rocking.
It really is ridiculous, and as my husband pointed out, the vertigo never settles on one thing, or at one level, therefore never allowing me to adjust to a specific feeling. It really is miserable, and this is one of the reasons why I question MAV. I’ve read on this site so many times that MAV isn’t progressive, but I am certainly progressing. Also, I’m not sure that I’ve read about such fluctuations in sensations, like I’m experiencing.
For the time being, I’m trying to get in to see another Neurologist, one who specializes in migraines.
Thank you again for all your help. X
— Begin quote from “GJB”
Thank you, Kennedy.
It really is ridiculous, and as my husband pointed out, the vertigo never settles on one thing, or at one level, therefore never allowing me to adjust to a specific feeling. It really is miserable, and this is one of the reasons why I question MAV. I’ve read on this site so many times that MAV isn’t progressive, but I am certainly progressing. Also, I’m not sure that I’ve read about such fluctuations in sensations, like I’m experiencing.
X
— End quote
GJB I sort of recognise what you’re talking about when you say " change in vertigo sensations". I used to worry every time a new one came along (and honestly, over time there have been what seem like hundreds!) and treat it as something that meant something else must be going on, but then at some point I just realised that all these variable symptoms that come and went at will, some hanging around for days, others for weeks, months maybe, were all part of the VM syndrome and I just stopped worrying that they signified something other than VM.
That said, I had gone through a pretty good elimination process and my history screamed VM very loudly. Mind you, at the beginning it was nevertheless a very tough diagnosis to fully accept. It is THE most awful, unpredictable condition to deal with and I wish you well in sorting it all out.
Brenda
Brenda, it’s nice to hear that my symptoms are familiar to someone here. If I have MAV and need to treat it, that’s fine, and I’ll happily comply with treatment. It’s just that, up until now, I’ve had a hard time finding other people here with my symptoms, particularly the slow rotational spinning. In fact, most people talk about never experiencing rotational spinning, and how MAV doesn’t progress. That’s what led me to really doubting the idea of MAV.
You say you went through an elimination process. Do you mean in regards to diagnostic testing, or eliminating particular triggers from your life? And how are you now? On meds?
Thank you for sharing this with me, Brenda. It makes me feel like I’m not so alone. X
Hi GJB
I had all the diagnostic testing, the same tests that everyone talks about on here, all negative. I trialled some meds too, all of which unfortunately didn’t help at all, in fact made me feel worse. I hated taking meds, was really scared of them after some very bad experiences years ago. It was only my desperation and sheer fear of where I was at (like you it was the real vertigo that got me scared out of my wits and soooo tense anticipating when the rotational stuff might strike again) that made me agree to meds. I gave them all a good shot but none helped and to be honest I was glad to come off them and give my body a rest.
Stumped what to do next, I started googling, and happened across Heal your Headache and started the diet as described in there. The improvement was quite dramatic. It’s been my only tool for the last 8 or so years. Triggers still play a huge part for me and can be cumulative. I try to reach a balance between ‘having a life’ and being sensible! It’s a tough call!
I must add that I think I’m the exception rather than the rule as far as meds go. I would have been delighted had they helped, despite my fear of them. We all have to find our own way of dealing with VM.
Brenda
Brenda, I truly want to thank you from the bottom of my heart. In the months that I’ve been reading these posts, your words have brought me the most encouragement. Also, I just ordered the book you referenced, as the diet I’m following seems a little off.
I think I really need to do an overhaul on my life: stress, new diet, sleeping, negative thinking. And while I appreciate this site more than I can say, I think I need to take a little break from it. I wish I were strong enough to not allow the horrible stories to influence my thinking, and the way I see myself, but the more I read about people never recovering, the more certain I am that I’ll be one of them. I’m just not well enough to be objective right now. I’m too scared and sick to read these stories without walking away feeling hopeless. I also understand that this site represents the worst stories, since healthy people—who overcame MAV—aren’t hanging around anymore, but still, I’m unable to reason objectively when I’m feeling so bad. I’m a 31 year old woman, with two beautiful, young children, and a husband I adore; thinking I’ll be bedridden till I’m an old woman isn’t working for me anymore, but that’s certainly where my mind is at. In fact, I’ve already resigned myself to 50 more years of this hell. So, you see: I must make some changes, and I don’t think there’s a pill in the world for that.
It is encouraging to hear that you got better without medication. I understand that you’re in the minority, I really do, never the less, it’s good to hear. While I agree that most people need medication, I can’t help but to think of all those people who haven’t posted on this site, and who did get better on their own. I’m not saying there are gaggles of people out there who’ve recovered without the use of medication, but there has to be more than what’s represented here.
If you don’t mind my asking, I understand medication didn’t work for you, but did you add any supplements to your plan? Any suggestions you can give are very, very welcome.
Thank you again. X
— Begin quote from “GJB”
If you don’t mind my asking, I understand medication didn’t work for you, but did you add any supplements to your plan? Any suggestions you can give are very, very welcome.
Thank you again. X
— End quote
Hi GJB, my main supplements back at the beginning were magnesium citrate, zinc and Vit B complex. I also tried Vit C, CoQ10, 5HTP and St John’s Wort but the first three were my absolute staples.
I should add that at the time I started the diet I also stopped eating wheat and dairy. I can now eat very small amounts of them both but never feel quite as good as when I avoid them altogether.
If you have any more questions please feel free to ask here or to pm me. 
Hope you’re doing better…
Brenda