I wrote my last post with just joy in my heart and feeling better than I had in as long as I can remember.
Then I crashed.
That evening I had a bout of vertigo, but I would not let it put a damper on my day. It was a glorious day, and I will hold it in my heart.
But it’s over, at least for now. Forgive me if this post doesn’t make as much sense as it should, I’m writing it as I watch the screen dance before my eyes. This is incredibly difficult, but I felt the need to tell everyone I’m not doing that well and I wanted to talk about it.
For nearly 3 days now I’ve had vertigo almost constantly. It may be slow at times where I just barely see the world moving, other times I can still handle it, it’s very hard to focus on anything and I can’t hear very well. Then I have times like I did last night. I was so sick. I didn’t sleep until 4am. I fought then nausea and vomiting. I had severe stomach cramps and feel like I threw up all night, but I’m happy to say I didn’t. (thank you to all my medications, and my darling husband who stayed by my side and chanted with me for hours).
I’m amazed at how much this has changed over the years. When I first started getting vertigo, and when it only came around a few times a year, I would have been throwing up for most of the last 3 days. I think the biggest thing that has changed is that I rarely freak out from it now. I don’t fight it. I know what’s happening. I try to just go with the flow. That doesn’t mean I don’t panic and that it doesn’t get to me, after a few hours I’m freaking out a bit. What if it never ends.
This makes me not want to live. I’m stuck in this chair, I can’t walk by myself, I can’t even use my walker most of the time without falling. Stuart and I have to walk in tandem to take me to the bathroom. I have my head on his chest and he walks backward to get me there. This is not a life.
I can’t communicate well. I can barely understand anything that is being said. I can’t focus on anything most of the time. Literally, right now I am typing on a computer that is swaying on my lap. If I didn’t type by touch, you wouldn’t be reading this.
Last night I went to sleep hoping to not wake up. Don’t worry I’m not suicidal, I just want live like this to end. The only way I can see this stopping is to not be here anymore. The risk with the gentamicin is so scary. I just don’t know what to do. Plus finding a doctor who would actually do it, well that’s a whole other thing.
My new doctor has mentioned steroid injections. I’m not sure it will do anything, but it can’t hurt to try. If I can hold it together long enough to get it done. And handle the side effects that are sure to follow for a while.
If I can get through more days like this. Days where the world spins at what ever speed it wants. Days where I can do nothing but sit here and wish for it to stop. Days where the steroids are making me so hungry, but I’m so nauseous at the same time. Unfortunately, the hunger wins most of the time. So I guess I’ll sit here and eat and just pray that this there is something that stops this. Something inside me that can slow this down enough that my eyes and brain aren’t so tired from trying to make sense of it all.
What do I do. I try to remember that is will not always be this way. It will end. I will have some relief. I have to believe. I will admit that is my biggest fear, that it will never end.
If you walked in my house right now I’d look perfectly fine, minus the few tears on my face. I’m sitting in a chair, staring at the computer, the TV is on in the background, hubby is sitting in another chair munching away. I look like I’m perfectly fine. But I’m fighting like hell just to hold it together.
This moment. I can get through this moment. I know I can. The next moment isn’t here, things will change. I know it will. That is the constant in the universe, everything changes. I will be in this moment, as crappy as it is, but I know it will change.
Sometimes that isn’t a good thought, I know this change could be worse. I’m not good with worse right now.
When people who have never had vertigo here me say, I’m having an attack, they have no idea what I’m talking about. However, I think when those of us who have vertigo mention, we had an attack, or we are having an attack. We don’t think about how bad it really is, until it is happening to us again. And we don’t think about how different vertigo can be for different people. I have found myself thinking, “If you are having an attack, how could you possibly be typing?” Yet here I am. When I only had the most horrific vertigo attacks and I heard someone say they had vertigo and it wasn’t like mine, I wondered, “Do they really know what vertigo is like?” Now, I can’t judge. I understand. Vertigo can manifest itself differently. You can see the world rotate, at different speeds, it doesn’t always have to be so fast that the world is a complete blur, it can mean that the world is slowly rotating, I see things they simply will not be still. Both are vertigo, I can just handle one better than the other.
Then I’ve found you can have vertigo where you feel you are moving but you don’t see anything moving. Most people say they feel like they are on a boat or something similar. I do have this kind of vertigo too, for me this is not as bad at the visual vertigo, for others this could be much more dramatic. I was rushed to the hospital once because the vertigo made me feel like I was being tossed around the room and I was completely still. I threw up a lot during that one, unfortunately I don’t think the ambulance attendant got out of the way of that once. I knew something was wrong, I thought I might be dying. I remmeber telling Stuart if I died I was happy everyone I love knows it.
When we got to the ER, they couldn’t do anything. Pumped me full of more of the meds I already have at home and told me that vertigo can make you feel like that. Inside I freaked out thinking, “I could feel like this again?” Now I have this recurring vertigo where I’ll suddenly feel like I’ve stepped into an open elevator shaft and I just keep falling. Stuart will hold me so tight and tell me I’m not falling, but I am. I know I am. I see the world rush by, I feel my body dropping. It has happened once without him here and I thought there was no way I could get through it. I did. But I never want to do that alone again. I never want to do it again at all, but that is kind of unrealistic.
Again, I want to assure everyone I’m not suicidal. I do believe this will stop. If it doesn’t there has to be someway that I can learn to live with it.
I didn’t post this when I finished because I started having much worse vertigo and I couldn’t see the publish button anyway. I might be able to type by touch but I can’t see that dang little cursor. This morning things are better. I’m still swaying, things are still a tad off, but it’s better. In this moment. that’s the only time I can count on.
11 thoughts on “Roller Coaster —– Down”
Seems to uninformed me this goes way beyond Meniere’s Disease. Do you know others who have vertigo to the severity that you do? I say this a lot, I know.
I don’t have the strength of will, spirit, hearth that you do. I wouldn’t be able to make it through the really bad, hoping for the better. You are an amazing woman, who deserves far better than a world that shrinks and spins.
love me to you
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Not necessarily more than Meniere’s. But migraines also cause vertigo, why I’m so very hesitant to kill my ears, wouldn’t stop that vertigo.
I do know of some who have vertigo like me, but some things are always different. How we’ve been treated, how it started, how often…all kinds of variables. They don’t know the cause of Meniere’s so they can’t say for sure. If I didn’t have this diagnosis it would be, “Unknown Vestibular Disorder” Treatment wouldn’t be different.
I’m surprised this happened with me on steroids.
They say you can take them all at once, I did, I think it sent my system into shock. Can’t remember how I took them last time. Now I’m spacing them throughout the day. Hopefully that’s why the spinning has almost stopped today…..knock on wood.
I have fallen apart many times this past week. I hope I can pull it together and handle this. Today I’m having osilopsia pretty bad, but I can handle that.
Feels like my world is shrinking though. I am not able to keep up with others.
I suddenly feel like all my encouragement to others has been dumb. I don’t think anything anyone could have said the past 3 days could have helped.
Accepting this, sucks.
But if it had stays, I know I’ll find a way to live some kind of life.
Love you, me
(Sorry DizzyChick if you’d rather me not have replied.) taleweavering– I know this question was not directed toward me so I’ll keep it short. In the spirit of awareness, I thought you would want to hear from another person with Meniere’s that yes, I have had vertigo to the crazy awful severity that she describes it. I was diagnosed with Meniere’s disease in my right ear in 2010. I have had it daily for months and I’ve had it for only hours. Each person’s Meniere’s disease is somewhat different.
Also, I have had chronic daily Migraine disease since 2005. I also have Migraine Associated Vertigo (MAV)- though it is different than Meniere’s attack w/vertigo as it doesn’t have symptoms that come with a Meniere’s attack (ear symptoms).
Before I knew what it was, I was sure I was dying and called an ambulance and it ended up being vertigo-this happened 3 times. It is a hellish symptom and I was told by an audiologist that it is the second most common reason people go to the ER because it is that horrid of a symptom.
Agreed DizzyChick, that you are an amazing woman who does not deserve this. I’ll write you more in my own comment.
Thanks for letting me share with you, taleweavering!
I wanted to add, the only reason I don’t know the difference between my Migraine Associated Vertigo and the vertigo caused my Meniere’s is the fact that I have Cochlear Implants, so my ears don’t act the same. It’s very hard to tell. and since one can have silent migraines (ones that do not cause pain), it is very hard for me to know the difference now.
However, before I had CI’s I could tell and I always had more vertigo with Meniere’s symptoms.
I hope that helps a little.
I have been told by the Dr at John Hopkins that some of my vertigo could also be caused by damage done while getting the CI’s so that is a consideration.
As I’ve been told so many times, I’m complicated.
but you knew that.
this sounds so terrible. I’m so sorry you are having such constant vertigo. I’m glad you are able to continue to write and keep us informed, so we can continue to support you. Take good care today.
I know there’s nothing else to say but I wish it would stop…and hang in there. hugs
Words cannot express my feelings about all you are facing…I hope tight but gentle hugs will do. (((((Wendy))))) xoxo Love You
Keeping you in my thoughts.
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I HATE that you had a 3 day attack- constant vertigo, Wendy! My heart goes out to you. And bravo! You got through it/are getting through it. I’m so proud of you. You wrote about it even though I’m sure it was a herculean effort. This disease is rotten but you conquered it by telling us about it. I am SO glad you did. I’ve not been on internet for a while and I have’t read prior posts. So I apologize for not knowing what you’ve written before this one.
But as far as this post goes, Wendy, I see you.
I wrote a really long comment-but I felt guilty so I tried to shorten it and it is still long! Sorry!
I see you because I’m currently in similar places as you in many things you said.
I’m glad you shared about not fighting the vertigo. That is such a hard lesson but essential to getting through it I think. I do diaphragmatic breathing and prayer and must be alone as I have hyperacusis during Meniere’s attacks.
And oh how I understand in the way that I can what you are writing as I have said recently “this is not a life” so many times. But been working through it and found a few positive places to land when I think that but too much to write here!
Oh my friend, as recently as this week, I have thought the same thing- the only way out of this is for me not to be here- then I won’t be suffering ect ect. When we are stuck in bed or a chair and the vomit is hitting the fan and we are enduring what most people will never ever understand or have to endure themselves (and some doubt as unbelievable), I have also rationalized why the only way is not be here.I can think of all the reasons WHY that makes the best sense even though in reality it does not to the people that love us. I get it that it is nothing about not wanting to live – we want to live – it is about not wanting to live like we are in that moment. It is SO hard to get through what seems like will not and is not ending.
I am SO proud of you for fighting like hell to keep it together to get through the attack and keep getting through each moment. It is one of the most heroic things I know anyone to do and it is also something that people rarely ever see unless they are our spouse or family member.
You are stronger than you think you are. I know it. I know it because I have listened to your stories and because I unfortunately, know some of the diseases –though I don’t know bilateral. I’ve heard you fight for yourself- visit doctors & advocate for yourself- shared on this blog and guest posted on others. For what you endure- for how you have persevered- simply because you have warriored through this thing we called Meniere’s disease (and others)- you are strong. It doesn’t mean that you don’t break down and you don’t feel weak ect. I see your strength at the same time I hear and validate your experience.
ITs late and sorry if I’m rambling and hopefully didn’t talk too much about myself. You are not alone. You are on my heart. love you!
(As you’ve read my comment I want to remind you of my perspective that I don’t believe in comparing as far as “who has it worse”-my comments aren’t about that at all. I believe if someone says something is painful or difficult or severe for them, then it is important-equally important as anything I’m going through. The only reason I share because I want to let you know you aren’t alone and to encourage you. If I came across poorly-let me know please!)
My dear Kelley,
You never sound like you are saying, one is worse than the other. We can’t walk in another’s shoes, and what I might consider hell, another may not. I accept that.
I hate that you can relate so much, but I feel humbled that you would share your story with me.
Please do not give a thought to a long comment. I love it. I miss you.
I get hyperacusis sometimes, but when I do I can just unplug my CI’s and then I can allow help. my hearing does do wonky things with the CI’s but it happens so often I can’t tell if it is because of Meniere’s or not. They think it may be, but it happens almost every day. Makes it difficult on me. I’m also lucky that my hyperacusis is not as severe, most of the time, as many people I know have it.
and as I said, when I do, I can unplug.
I do now just let the vertigo go. I try to focus on something a bit, but my eyes will start to hurt really bad after a while. Since I’ve learned to just go with it, relax and be okay in the moment, it is better. But when the moments keep on and on and I literally feel like it is never going to stop, I get really scared. I’ve broken down more this past week than I think I have in the past year.
Stress is not helping either.
During an extremely emotional and difficult time I’ll chant. My husband chants with me and even though I sometimes can’t “hear” him I will put a hand on his neck and feel the vibrations, it is so soothing.
I don’t know how you go through an attack alone. I always think, I couldn’t do it alone. If I’m alone I’m terrified. Someone has to be in at least ear shot. And to help me clean myself up if the worst happens. (I will sometimes not just vomit but I lose all control of my bodily functions) this time I handled it. I didn’t vomit. I cramped and felt like I was. I had dry heaves and there was plenty in there to come up. It’s a horrible feeling.
Now who is rambling?
and who is talking completely about herself.
I really don’t know how you deal with everything you do.
You are a hero to me.
I adore you.
much love to you and George.
BTW, you can call me Wendy on here.
I know you know who I am. 🙂
Dear Kelly Wahle –
I’m very grateful to be able to say that vertigo is not one of my particular challenges. But if it were, I’m sure there would be nothing I could really say in support of Wendy that you didn’t already say better.
“DITTO” would be what I would write, if I didn’t want to appear to be one of those annoying people who buzz around the ‘net clicking “like” and leaving “good job!” comments that don’t even leave a hint about what they think is so good!! (I mean, did those SHORT commenters even read the referenced article at all?) I’ve always thought those kind of comments were like having somebody call on the phone, only to tell you that they can’t talk now!
So, you see, some of us PREFER long comments. It breaks my heart (and worries me, to tell the truth) every time I read an apology, for goodness sake, from someone leaving a comment longer than a tweet. Sheesh! Are reading and writing already already becoming lost arts to the extent that we feel we must apologize for leaving those who aren’t fully literate out of actual conversations?
Your long comment above (or below – or wherever this theme puts them) was so wonderfully loving & empathetic that it first made me wonder how apologizing even crossed your mind. Then I imagined that you were probably apologizing because the subject of the article was vertigo, which can make it difficult to read.
I still think your long post was actually more caring than a few short words. People who can’t get through long posts all at once (like our amazing Wendy and others) can take them in chunks, or save them to read later. At least they have something to look forward to that is more like a chat than a quick “feel better” holler through the window as if they were contagious or something.
Last – but not least by a long shot – my recent research on what is being referred to as “the loneliness epidemic” on sites all over the ‘net indicates that ONLY engaged conversations in virtual communities protect health and immune system functioning, etc. as well as interactions in face-to-face communities – which is SO important to anyone who can’t really get out to socialize.
So MY apologies to sweet Wendy for the “cross-talk” here on your blog – but maybe now you will actually BELIEVE all the times I have responded to your apologies for “rambling” in a similar manner.
I love you – and hope you feel better very, very soon.
(Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
– ADD Coach Training Field founder; ADD Coaching co-founder –
“It takes a village to transform a world!”