Category: vertigo

Roller Coaster —– Down

On By WendyIn Chronic Illness, vertigo11 Comments

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.

What’s this thing called “Vertigo” anyway?

On By WendyIn Chronic Illness, Meniere's Disease, vertigo8 Comments
vertigo caught in motion
me during a vertigo attack – photo by w. holcombe

There are different definitions for the word “vertigo” (noun – ver·ti·go \ˈvər-ti-ˌgō\)

Webster’s Dictionary defines vertigo as:
a feeling of dizziness caused especially by being in a very high place

1a : a sensation of motion in which the individual or the individual’s surroundings seem to whirl dizzily
1b : a dizzy confused state of mind

On American Family Physician’s site I found a great article, Dizziness: A Diagnostic Approach.  It describes all kinds of Dizziness, the different causes and treatments.

In it they describe vertigo as : (A) False sense of motion, possibly spinning sensation.

I could go on and give you different definitions, many would be a bit different from others, but the main thing they have in common, one feels as if they are in motion.

Vertigo is not just dizziness, it is a type of dizziness, just as lightheadedness, and disequilibrium are but it is more than what most people consider dizziness.

Vertigo is the sense of motion.  Most often it includes seeing a spinning sensation, it also include other feelings of motion including, a sense of falling, rising or being jerked in one direction.  These are not encountered as often as rotational vertigo. (Understanding Vertigo and What to do if you have it. – The Washington Post – 2014)

I thought I’d take this opportunity to tell you, as best I can, how vertigo feels to me.

I have rotational vertigo (seeing my surrounding spin around), and motion vertigo (I often feel like I’m moving when I’m not.  I will feel like I’m suddenly free-falling, or being jerked around.)

The best way I know to describe rotational vertigo is to give you an example most people understand.  Remember when you were a kid and you used to spin around and around until you fell down seeing the world spin around you, (if you don’t remember this, or have a loved one with vertigo, I encourage you to do it now to have a sample of what we see).  Now that you have that image, imagine seeing that but it doesn’t stop.  When you just spin around the spinning sensation stops in a few seconds, for me it can last a few minutes to a few days.  The average is about 4 hours.  When I have this type of vertigo attack I often get very sick.  Imagine motion sickness times 1000.  I will throw up for hours, it can get so violent that I will lose control of every bodily function.  It is horrific.

I used to have other motion vertigo every once in a while, now it comes much more often.  I often feel like I’m in motion when I’m not.  I’ll feel like I’m on a boat, I’ll even feel like I’m walking around while I’m sitting still.  In the past year I’ve started having vertigo that makes me feel like I’m being thrown around the room (the first time this happened I thought I was dying, after an Ambulance ride and spending over 9 hours in the Emergency Room I was told this is a different form of vertigo.  (freaky)  I’ve also started having feelings as if I’m free-falling, I can only imagine it’s how one would feel if they stepped into an open elevator shaft.  This is one of the most frightening things in I’ve encountered.

Rotational Vertigo is not always at the same speed.  Sometimes I see my surroundings spinning by in just a blur, during these attacks I always get sick.  This will include hours of vomiting and sometimes I will lose all control of my bodily functions.  It’s horrific.  Other times my surrounds will spin by at a much slower rate.  After having rotational vertigo for so long many of my attacks are not as horrific.  I don’t panic now.  I will stay as calm as possible and just watch the world spin by, mostly I’m really bored.  This is the time when my mindfulness practice really comes in handy.

I’ve learned if I focus on something about 12 – 18 inches from me I often don’t see things go by quite as fast.  If the spinning isn’t too fast I will watch TV reading the captions.  For some reason if I concentrate on the captions the vertigo slows down.  This does not happen if I try to read anything else, that just makes me sicker.

I used to throw up no matter what.  I may have mentioned this before, maybe not, but I’ve had 2 doctors tell me that if medicinal marijuana were legal they’s prescribe it for me.  So I’ve tried it to see how it helps.  I can honestly say that I believe it has stopped me from going to the ER many times for dehydration.  It stops me from throwing up.  That is amazing to me.  I very rarely throw up now.   It can also calm down an attack if I use it fast enough.  (if you’d like to know more about how I use this to help, feel free to ask, I will say that I never feel high, I use very little, just enough to help me.)

Now, do you understand more about what Vertigo is and what my vertigo feels like?

If you suffer from vertigo, do you have similar experiences or is your experience different?

Update On My treatment

On By WendyIn Chronic Illness, Cochlear Implant, Deaf, Meniere's Disease, vertigo, Vestibular Illness14 Comments

dandilion flower

My treatment for vertigo as laid out by the doctor at John Hopkins was to continue working with my migraine doctor to get my migraines and migraine associated vertigo (MAV) under control, go to vestibular rehabilitation therapy, and to have gentimiacin injections (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere’s disease).

As you might recall I wasn’t thrilled with the doctor I saw in our city, and was not going to allow him to do the gentimiacin injections.  However, he did send me to vestibular rehab.

I’m still seeing my migraine doctor (a neurologist who specializes in headache pain), we are working on getting the migraines under control.  I can’t say I’m having fewer migraines but they do seem to be less intense.  It’s hard for me to tell if my vertigo is caused my MAV or if it’s a Meniere’s attack.  (If the vertigo is caused by MAV then  gentimiacin will not help.)  You may recall that I had seizures in February that caused me to be hospitalized.  My neurologist told me that one of my medications, Topamax, which is actually used to control seizures, can sometimes cause seizures.  It appears this may have been my problem.  I’ve since stopped taking Topamax and the seizures have subsided.

The vestibular rehab is going well.  I haven’t been to a lot of sessions yet, but so far so good.  When he did the initial intake exam he found I have still been having symptoms of Benign Paroxysmal Positional Vertigo (BPPV), and he treated it with the Epley maneuver.  This is something that the doctors I have seen ignored, the nystagmus (involuntary movement of the eye) is very slight, and the doctors didn’t see it, however, I felt like they didn’t believe me.  (I can’t remember if I mentioned these symptoms to the doctor at John Hopkins so I can’t say he ignored them.)  After this treatment I have had very little BPPV symptoms.  On the way home from the first visit I had a bad vertigo attack that last hours.  Since then my treatments haven’t caused an increase in my symptoms after leaving. During the treatments I often get a bit overwhelmed and wonky, but Ryan watches out for this and makes me take a time out.  I still have a few sessions to go before being reevaluated.

Now, about the doctor situation.  I will be seeing a new doctor on the 22nd, next Tuesday.  It’s kind of amazing how I found this doctor.  Advanced Bionics (AB), the company who makes my cochlear implants (CI), are going to have an event talking about new products just right down the street from me on Friday.  When I was sent a notice about it I decided to email to the AB representative for our area and discuss some of my issues.  I told her about how difficult it is for me to hear on the phone and wanted to know if they had a new product to help better with that.  They don’t, but I we both think most of my troubles there is lack of practice, since she has been a speech therapist for years she gave me good exercises to try to get me used to the phone.

I decided to tell her my predicament with not being able to get my CI’s program updated (called mapping) here when I have problems, even though there is an office that provides this service.  (they will only map CI patients who were implanted by their office)  As luck would have it, her husband works for this medical group.  He is an otolaryngologist.  He is new to the office and is working to get things better there.  He gave me suggestions about things and I decided to tell them about my problems with the doctor I’ve been seeing.  He told me he would be happy to take me on as a patient, or he recommended another doctor in the group.  He just wanted me to have a good experience there.  Wow.  I decided to go to see him.  He is very willing to confer with the doctor at John Hopkins.  He is also going to work to get my CI’s mapped at that office. Their rule is so people won’t go to a hospital just a few hours away and then expect them to do the follow up work.  I think it’s more complicated than that, but that’s a big part of it.    The big issue with me is that I wasn’t living here when I was implanted so I should be able to be seen there.  Is that just a lucky thing or what?  I’m so happy I reached out to her, you never know who may be able to help.

How am I feeling about my treatment?  Good, so far.  I’ll discuss it with my new doctor, but right now I think I’m going to put off the gentimiacin injections.  I’m doing much better right now and I just don’t want to take any chances that the vertigo is coming from my migraines.  I have been thinking we may as will have the injections in the ear that registered a 4 on the caloric testing. (the normal reading is a 21).  Since it’s that far down I want to know if it could help to go ahead and do the gentimiacin. We’ll see what he says on Tuesday.

So, that’s where I’m at right now.  Very grateful everything is going so well.

dandilion puff

photos by W. Holcombe 2016 all rights reserved.