My So Called Dizzy Life

My Chronicles of Vertigo, Nystagmus, Imbalance & Dizziness

My Dizzy Beginnings

Part 1

My first “dizzy” incident occurred on Memorial Day 2012.  I was out for tea with my husband and some friends and I was feeling slightly off but I attributed it to being tired.  I got up from our table to order more tea for everyone and I could barely make it back to the table.  I felt like I couldn’t stand, I felt weighted down, I felt like I couldn’t even sit in a chair and that I was going to fall to the floor. I had no control. It took all I had to fight through the fog and say “Something’s not right.”  Then the room started spinning.  It was like being on an uncontrollable Tilt-a-Whirl at an amusement park.  My husband, Erik, held me up and told me that my eyes were darting quickly back and forth, from side to side.  I felt like I was going to pass out.  This only lasted a few minutes.  I had never experienced such a sensation and was quite frightened.  Even though my eyes had stopped moving and the room was no longer spinning, I still didn’t feel quite right. We went home and I rested for a few hours, hoping that I would magically feel better.

Well, of course, I didn’t.  My head hurt, I felt light-headed and out of it and I was just plain ole’ freaked out by what had happened.  It takes a lot to make me want to go to the doctor, but I sucked up all my “white coat” anxiety, and, since it was Memorial Day, we went to Kaiser Urgent Care.  The doctor I saw said that I had Vertigo and probably BPPV (Benign paroxysmal positional vertigo).  Basically, she thought that maybe I had a virus that would go away on its own and that I would be feeling better soon.  In the meantime, she ran a bunch of blood tests on me and told me that if I felt really dizzy or nauseous to take some over-the-counter Antivert (Meclizine).  She told me to rest and stay home from work the next day and if I continued to feel bad to follow-up with my Primary Care Physician.  I received a call the next day with the results and sure enough my White Blood Count values were “outside the standard range.”  Infection confirmed.

Two days out from my first incident, I went back to work.  I still felt dizzy and out of it.  I felt nauseous. My head hurt, I couldn’t focus on work, I felt foggy, and I felt unsteady.  When I walked around the office I kept grabbing on to things or touching the wall because I felt like I was going to fall.  I was afraid I would have another incident.  I called my primary care physician’s office and luckily got an appointment within the hour.

When I got to Kaiser for the appointment, the nurse who checks you over first asked what brought me in.  I let her know about my incident and the BPPV (which she had never heard of) and I listed off a bunch of my symptoms.  When the doctor arrived in the room, she seemed very rushed and frantic.  She immediately told me that what was wrong with me was that I had Depression.  DEPRESSION.  All based on what was relayed by the nurse.  I was so taken aback.  I made this appointment with my physician because I was feeling like crap after an incident of vertigo, where my eyes were darting back and forth and I almost passed out and she was calling it depression?!?!  I had to (as politely as I could) argue back about her so well-informed diagnosis.  I told her that I knew what depression was and that this was in no way depression.  I could feel that something was wrong in my body, something that was off-balance.  I wish I would have had the courage to just walk out of the appointment.  But I had never done such a thing.  It seemed rude.  I stayed.  Everything felt wrong.  From the way she was talking to me and the way she wasn’t listening to me.  My knowledge of my own body and what felt normal and what felt very wrong was not considered.

The doctor started going off in some other direction about a high-blood pressure reading that the nurse had taken.  As a bigger girl, my blood pressure is always taken with a larger cuff but the nurse didn’t have one in the room and didn’t want to go get one, so she took it with a normal one that kept ripping off of my arm and slipping.  One faulty blood pressure reading and the doctor was ordering all sorts of tests on me to see why it was so high.  Did I mention that the doctor was sitting at a computer, talking to herself rather than me?  So I manage to steer her back to the direction of why I had made my appointment: my vertigo incident.  I told her that I didn’t feel right and I kept getting headaches and my vision didn’t seem as crisp and that I was having a hard time focusing on things.  I felt fatigued.  I told her that I just felt really “off” and foggy.  She said it was probably a virus.  I told her (yet again) that this all started with the Vertigo.  I even presented her with a list of all the symptoms I was feeling.

At this point, I also asked her if she could fill out some FMLA paperwork, since my job BY FEDERAL LAW requires it when you were out 3 or more days for the same illness.  I told the doctor that I had already been out two days and I knew that there was no way I could go to work the next day.  She refused.  And not courteously.  She actually told me “No!”  She said that “those things” take too long to fill out and she never knows what to write on them and she didn’t have the time.  At this point she actually seemed furious.  Annoyed with me or the system?  I wasn’t exactly sure, but I was definitely on the receiving end.  I tried again to explain why I needed the paperwork filled out and that just seemed to further irritate her.  She snapped at me that I didn’t have a disability.  I finally asked her point-blank, “So, you’re telling me that I’m perfectly fine and there’s nothing wrong with me and I can go to work?”  And she said yes.  She Said Yes.

It was pretty obvious at this point that she just wanted the appointment to end, so she left the room to go to the printer to get my appointment review/follow-up instructions.  I couldn’t help myself and I burst into tears.  I just felt so tired, so sick, so devalued.  Brushed off.  I didn’t feel like I was treated with respect or compassion.  I expected that from my doctor.  She came back in the room, saw that I was crying and handed me a box of tissues and my appointment papers; she told me to take my time, and then she left.  That was the last time I saw her.

I was extremely upset afterwards.  The entire appointment was odd and she completely ignored the Vertigo.  In fact, on the paperwork that she printed out, under the “Health Problems Reviewed” she didn’t even list Vertigo – just Viral Syndrome and Headache.  In the “Personal Care Instructions for You” she suggested that I “consider a multivitamin,” that I schedule an eye exam, that I “use artificial tears, every hour – at least 3 times a day,” and that I take frequent breaks from the computer screen because I was “describing eye fatigue.”  Even though I stressed to her that all my symptoms began after the Vertigo incident, it was totally disregarded.  Maybe she didn’t believe me (had I known, I would have brought witnesses).  I went to work the next day and the days after that, since I didn’t have the FMLA paperwork.  I worked in a daze, trying my best to focus and push aside the strange feelings, the unsteadiness, the dizziness.  I slept in my car during lunch.  So, after Vertigo Incident #1 I was left with the solution of multivitamins and eye drops.

Part 2

In the weeks after my first Vertigo incident, I slowly started to feel somewhat better.  Or maybe I got used to feeling sick – I’m not sure which.  I was still exhausted and still had headaches, but I tried to get back into the normal routine of things. I knew I had to pick a new doctor because there was no way I was EVER going back to The Evil Doctor again.  Then the morning of June 14th, 2012 hit.  My husband’s alarm clock went off early, at 5:30am.  I remember rolling over in bed and feeling strange.  My eyes weren’t even open yet and I knew something was wrong.  I could feel my eyes moving quickly underneath my eyelids.  I asked him as calmly as I could if he could turn on the lights and look at my eyes (he says my tone was anything but calm and that he could tell that I was already agitated at this point).  Erik confirmed that my eyes were uncontrollably, rapidly moving side to side and, like the first Vertigo incident, I had that horrible spinning sensation.  This wasn’t just dizziness, which is just that light-headed, unsteady feeling.  This was the world constantly tilting, moving, rotating, spinning all around me even though I was laying still.  Everything was whirling by.  My cheeks were flushed and I was sweaty.  I couldn’t sit up in bed on my own.  I was very nauseous and repeatedly got sick.  This felt 100 times worse than the first incident.  I was freaking out.  Minutes went by and it didn’t stop.  Erik was getting really concerned at this point.  We didn’t know what to do.  We tried calling Kaiser’s advice line and were told we’d get a call back.  More minutes went by and the spinning, the rapid eye rolling, the whirling, the Vertigo didn’t stop.  I think at some point I started crying and told Erik that I knew that something was really, really wrong.  We decided that we needed to go to the hospital and we weren’t about to wait for some advice line nurse to call us back.  Erik helped me get to the bathroom, dress, and get down the stairs.  I was incapable of doing any of this on my own.

We got to the Emergency Room some time around 6:30am.  They started an IV and gave me Antivert and Valium.  Hours went by.  More doses were given to me.  They sent me for a CAT scan. The ER doctor would stop in and check on me periodically.  He said that usually the Antivert and the Valium would stop the Vertigo for most people. At one point, he even called in other doctors to see how rapidly my eyes were moving back & forth.  That’s when you know you’re a special case.  I pretty much kept my eyes closed the entire time and tried to lay as still as possible.  Watching the room tilt and spin was intolerable and the drugs weren’t helping.  Finally, around 1pm they admitted me to the hospital because I was such a “severe case.”  I’ve heard that a lot since then.

For the first couple of days in the hospital I kept my eyes closed and stayed as still as possible.  Any sort of movement intensified my symptoms.  Lying perfectly still in the dark helped some.  I couldn’t get out of bed or go to the bathroom without help.  I kept waiting for my vertigo and rapid eye movements to stop.  Every day doctors came and went; I had two Internists, three Neurologists (including one who specialized in Neuroophthalmology), and an ENT.  The doctors explained that the involuntary rapid eye movements that I was experiencing with my Vertigo was called Nystagmus.  Doctors prodded me, performed common neurological tests, sent me for another CAT scan, and an MRI.  They took blood for tests every day.  One day the Neurologists gave me some sort of “Migraine Cocktail” to see if a migraine was causing my symptoms.  My headache went away temporarily, but none of my other symptoms.  They continued the Antivert and started me on all sorts of different drugs to try to help my symptoms – drugs that had other intended uses: Namenda (an Alzheimer’s drug, which I think I was only on for a day), Clonazepam, and Gabapentin (both frequently used to treat epilepsy, but also used as vestibular suppressants to treat vertigo), and a few days into my hospital stay they started me on a 10 day course of Prednisone (designed to reduce swelling of the vestibular nerve).  The doctors ruled out various things like a Stroke and MS that cause similar symptoms.  They sent blood to the Mayo Clinic for a Paraneoplastic Autoantibody Evaluation (I think they were testing for cancer??  It came back fine).

It took two to three days for my vertigo to get a bit better and for my nystagmus to slow down enough so that I could see without the world spinning.  I still had no balance.  The doctors told me that they suspected that I had Vestibular Neuritis.  This was their “differential diagnosis,” meaning that they came to this conclusion through a process of elimination, and sure there were other possibilities, but this seemed the most probable.  They believed that a viral infection to one of my vestibular nerves (you have one in each ear) was what was causing my severe vertigo and nystagmus.  WebMD’s Vestibular Neuritis webpage has a great description of this: “The infection inflames the vestibular nerve.  This causes the nerve to send incorrect signals to the brain that the body is moving.  But your other senses (such as vision) don’t detect the same movement.  The confusion in signals can make you feel that the room is spinning or that you have lost your balance (vertigo).”

Every day I would wake up in the hospital, open my eyes and hope that things were back to normal.  I would ask whoever was around (my husband, the nurse, the cna), “Are my eyes still moving?”  And every morning I had to swallow back my disappointment.

Eventually the goal was to get me out of the hospital so that I could go for testing and special physical therapy that was not available in the hospital.  I met with the hospital physical therapist one day to assess how I could walk.  It didn’t go well.  I was not stable walking on my own.  She brought up using a walker and the tears just started flowing out of me.  You just never imagine being 34 and using a walker.  That was a condition of me being discharged from the hospital: patient must use walker.  On my discharge papers from the hospital it lists my diagnosis as “Severe Vertigo with Nystagmus and Vestibular Dysfunction.”  And that, kids, is the condensed story of my Dizzy Beginnings…

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17 responses to “My Dizzy Beginnings

  1. Leann Pears says:

    I feel for you……this happened to me a little over a year ago……..and was told take antivert, lots of it…..until they finally weeks later got the ct scan showing all the vestibular nerve damage to the right side. Now, I have meniere’s on my left side and I am dealing with that and still do my physical therapy everyday. Good wishes to you.

  2. Emily says:

    Hi Leann,
    Thanks for stopping by and reading my story. I am so sorry that you, too, have to deal with a vestibular disorder.
    It can be so frustrating (not to mention isolating!) If I had a dollar for everytime someone asked why I didn’t just take some Drammamine! 😉
    I hope you are making lots of progress.
    Emily

  3. Debra says:

    Hi Emily, so nice to find your blog. I have had intermittent dizziness and vertigo for the last 5 years, worsening in the last 2. I was recently diagnosed with MAV. I too have started vestibular rehab and am hoping for some relief. I also live in Colorado. Thanks for sharing!

    • Emily says:

      Hi Debra,
      I’m glad you found my blog too. 🙂 Are you going to a Balance Center in Colorado for your Vestibular Rehab? I’ve read about some, but since I have Kaiser they are out of network for me.
      I wish you the best with your rehab!
      Emily

  4. Ashley says:

    This story was captivating. I can’t believe how that doctor treated you. I’m so sorry. Good for you for listening to your body and going to the hospital. I will check your blog for updates, not just on your symptoms, but how they are affecting your emotions and your life. That’s a beautiful thing about blogging. I started blogging myself to chronicle the emotional issues with my own health problems. It’s cathartic; it helps other people who need to identify with someone going through similar things; it also helps people understand what you’re going through. I like that you do it also to help your get used to looking at a screen. I love blogging. Keep it up!

    By the way, I found you through your ski/walking pole post my friend with a vestibular disorder shared. I may look into those for my own balance/fatigue issues! (No vertigo; mine are neurological).

    Thanks again. Keep it up!

    • Emily says:

      Hi Ashley,
      Your comment was just perfect! Yes, blogging is cathartic and it helps so much to be able to write down (well, type) my feelings.
      I highly recommend the trekking poles. They did take me a couple of days to get used to, but they are a life saver for anyone with balance issues.
      ~Emily

  5. Hi Emily….what an interesting story you have. I can imagine your frustration going through all what you have. I can’t believe your doctor was so mean. I often wonder why some of these individuals are in the profession that they are in. I hope you found a new family doctor first of all. I am going to read more of your stories and hopefully it will cheer me up. I have had vestibular issues for 16 years. I have been feeling the worst yet in the last few months. Mine came on suddenly as well but not sure if it was related to being hit by a car a year before this happened. I had symptoms of not feeling great like I was going to pass out when I was talking to a friend on the phone, then an extreme pain in my head like I was being hung by my hair…nothing found at the ER. A few days later I would get an excitement feeling going through my body up from my feet and then it would reach my eyes and a white cloud would come over and disappear. It was two weeks later the lightheadedness/dizziness kicked in and I have had it ever since (like being on a boat 24/7). The last two months I get constant moving, swaying and jello head/body feeling. It is horrible. I can’t focus or concentrate. I had 23% vestibular loss in my left ear last year but recent testings found nothing. I haven’t been able to find work in 3 years as I lost my job 3 years ago due to the economy and afraid of doing so with my “dizziness” so bad. My health was bad but not like it is now. I rarely missed time off work. Are you back working? I tried VRT last year but did not work and she said I have more or less compensated after 16 years as to it not working. I have recently beeing seeing as Osteopath and he said it could be cranial issues I have resulting from the accident and stress. I am a slightly bigger person and I have BP and pre diabetes so having this on top doesn’t help. Look forward to your other postings. Lynda

    • Emily says:

      Hi Lynda,
      Yes, I found a new doctor (and filed a complaint against my ex-doctor). I admit that I am still holding on to some negative feelings towards my ex-doctor. They are tough to let go of. I did make a promise to myself to never let another doctor discount me again and to take charge of my health. There is nothing that I can do about it now, but I do wonder if it might not have gotten so bad if I had found a doctor who was willing to listen to me. It was an important lesson to learn, although I wish I didn’t have to learn it this way.
      I am back to work; it’s been about two months now. I was running out of FMLA time, so I had to return to work. I won’t lie – it’s hard. I’m tired all the time, I’m dizzy at work, I wobble in front of everyone, and my eyes have trouble with all the computer work I do. I just keep hoping that it will get easier (and it is a bit better than it was a month ago). I love my job and want to be able to continue doing it.
      I hope that my blog does cheer you up a little. Even just a few smiles a day does wonders for your body and spirit. 🙂
      ~Emily

  6. Deborah says:

    Hi Emily! I have had dizziness since beginning of May 2012. I have changed my diet, started taking hormones & still not gone away though has improved. I can function at least. I just went to the ENT & was diagnosed with Labrynthitis & started VRT last week. But before I started the VRT I was taking these homeopathic drops called Cerebromax by Desbio out of Utah-they really seemed to work. I would still be taking them besides that I want to get pregnant & I don’t know if it would interfer with VRT. Anyways, thanks for blogging about this horror.

  7. Ashley Corrine says:

    Love this Blog, Emily!

    I swear when I started reading this, I thought I could have written it myself. I had my first episode of vertigo on Memorial Day 2012 also. I thought I was dying. Couldn’t lift my head, was physically ill when I did. I suffered through the night, and managed to drive the block to the doctors the next day. My doctor diagnosed me with vertigo and handed me a paper with exercises to perform myself at home… everyday about 3 times a day. The Epley Maneuver is successful, if properly done, and I had no idea what I was doing. It took a week until I could return to work, but for months I felt foggy and just off balance. I felt better moving around then sitting still, and laying down at night was horrible. I would have facial pain, sinus pressure, the works for months… was put on antibiotics. Had a CatScan of my sinuses, saw an ENT who sent me to neurology for tension headaches, who sent me for an MRI, and then to a physical therapist for the headaches… After a second episode in October, I was fed up, and finally my physical therapist suggested I see a vertigo guru at the hospital I work at. I pushed for that appointment, and I am so happy I did. At first, he was hesitant to diagnose me with vertigo because of the residual dizziness I had, and not to mention my young age of 28, but the appointment resulted in “call me the next time you have the dizzy sensation and I want to see you asap” and sure enough, this past Sunday, in my sleep I suddenly turned to my left and instantly awoke with a spinning sensation. I quickly turned back to my other side and was able to sleep it off, but the next morning, I still felt “off” and decided I’m going in, I left the office a message and sure enough they got me in for 8:30 am, and I was tested and fixed with the Epley maneuver and got to wear these spiffy goggles as my eyes jolted and it was confirmed that I have BPPV – Benign paroxysmal positional vertigo. So basically if I ever let my left ear be parallel with the earth, I trigger an episode. Thankfully, by seeing the professional, and having him do the maneuver, I was fixed within 20 minutes, and able to return to work the next day. I’m still not 100%, but I’m definitely feeling better than I have in the past about what was going on – at least I know I’m not losing it, or going crazy. I can relate so much to your description of your life and being confined to a world of unbalance and the lack of stability. I used to be an active person, and over the last 8 months, I gave up working out because I feared the impending dizzy spells. On a good note, reassurance of results in 20 minutes does give me hope that this will not be a constant for the rest of my life. There apparently is a surgery to fix this, lodging the calcium particles so they cannot get out of place and cause the vertigo, but head surgery isn’t ideal to me… it does also create a permanent off balance feeling, but is apparently very adaptable for younger people.

    Well, now that I told you my whole story – I just wanted to say thank you for sharing and making me know I’m not alone with this lovely dizzy condition. I highly recommend looking up Jeff Walter – http://www.vestibularseminars.com/, he knows his stuff.

    Best of luck!
    -Ash

    • Emily says:

      Hi Ash,
      I’m so sorry for the delay in responding to you. (Aparently, having a Vestibular Disorder is exhausting (!) and I, unfortunately, just haven’t had the energy to do everything I would like to do, so this blog was on the back burner…)
      I’m really glad you found my blog. It was very interesting to read your story – thank you for sharing. I hope you are doing better with your dizzy condition. I’m so sorry that you’ve had to deal with the dizzies too. I’m curious, have you managed to get back to working out? I’m going to check out the link you sent – it’s so hard to find information on the dizzies!
      I hope you have many dizzy-free days!
      Emily

  8. brooksand1 says:

    HELLO I AM JUST WANDERING IF ANY OF YOU SUFFER THE SAME SYMPTOMS AS MYSELF I LIVE IN THE UK 3 MONTHS AGO TODAY MY SYMPTOMS STARTED WITH SEVERE SPINNING AND SICKNESS MY SYMPTOMS TO DATE ARE AS FOLLOWS – CANT FOCUS WHEN WALKING ,HEAVINESS IN BACK OF HEAD LIKE A BRICK FEELING,
    ELECTRIC CURRENT THROUGH BACK OF HEAD, IF I RUN MY FINGERS THROUGH MY HAIR ITS LIKE A FEELING OF A MILLION NEEDLES AS IF MY HEAD IS ALIVE ,MY EYES FEEL AS IF THERE BOUNCING AROUND IN MY HEAD ,TINGLING IN MY FEET AND LEFT HAND,WHEN TURNING HEAD IT FEELS AS IF THE INSIDE OF MY HEAD IS TURNING DIFFERENTLY TO MY SKULL , TIRED / FATIGUE ,SALT TASTE IN MOUTH I FEEL AS IF IM ALONE IN ALL THIS WOULD LOVE TO HEAR IF ANYONE HAS THE SAME SYMPTOMS AS ME

    • Emily says:

      Hello,

      Sorry for the delay in responding. I have had some of the same symptoms as you (focusing problems, heaviness in the head, fatigue, feeling like the insides of my skull are bouncing around) but I’ve never had an electric current feeling. Are you still experiencing these symptoms? Have you seen any specialists?

      I hope you are feeling a bit better and would love an update,
      Emily

  9. HEY Y’ALL, I’VE HAVE MS SINCE I GRADUATED FROM NURSES TRAINING BACK IN ’88. I KNEW I HAD SOMETHING WRONG C ME, BUT I KNEW NOT TO MENTION “MS” TO THE DR.’S. THEY KNOW IT ALL, & IF A PT. TELLS THEM, THEY JUST IGNORE THEM. SO I SUFFERED C THE ATAXIA, FATIGUE, & ALL THE OTHER SYMPTOMS, BUT I KEPT ON WORKING. IN ’95 I BENT OVER TO GET MY MAIL, PUT MY HEAD UP & THAT’S WHEN MY VERTIGO STARTED. IT’S NEVER QUIT. BUT, HAVING UR NEUROLOGIST TREAT U MEAN, IT’S KIND OF A THING THEY MUST DO, TO FEEL IMPORTANT. IT’S YOUR BODY, U R THE ONE WHO KNOWS HOW U FEEL, THEY DON’T. JUST KEEP ON GOING, TELL THEM WHEN U THINK THEY R WRONG ABOUT U, ONLY U KNOW FOR SURE, THEY JUST DO THE TEST, SOME DON’T EVEN READ THEM CORRECTLY! KEEP THE FAITH, GOD IS OUR SOURCE FOR HEALING! JANIE

  10. Deborah says:

    I had the electric current thing in the back of my skull. I have removed all grains, corn & potatoes & it has gone away completely though I do have focusing problems if I have too much carbohydrates ( more than 1 serving a day). It is related to “yeast” like bacteria. A good probiotic should help too. Good luck

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