Constant Rocking/Imbalance - Thinking the Worst

Posted , 14 users are following.

Hi All,

This is kind of long, but it's becoming unbearable and I just need to know if anyone has any insight they can give me. 

This all started early Feb. 2015, I had been feeling a little under the weather for a few days, but didn't think much of it. I went to bed one night and woke up around 4 am or so with my ear throbbing, feverish, and the room completely spinning. I didn't know really what was going on, but I'd later be able to identify it as true vertigo. I managed to get myself up after laying still in bed for a few hours and went to work. When it only kept getting worse throughout the day, I went to a walk in clinic and was diagnosed with an Upper Respiratory Infection, and given antibiotics, meclizine, and some allergy meds, basically just throwing the book at me. Dr. Told me I'd be better in a few weeks and it'd clear up with the infection.

Well, after about 3 weeks I would say the vertigo did go away, but I was left with a chronic sense of imbalance/dizziness. It took awhile for me to understand what it really was, but it was mostly a feeling of rocking/swaying, that also came with things appearing to be moving slightly. For instance when driving, if I stopped at a stop light, it would seem like the road was sometimes moving away from me. These were all super distressing, and I started having panick attacks, which I also didn't recognize for what they were at the time. I have always been a fairly anxious person, but never to the point where I needed to be medicated/couldn't tolerate my own anxiety.

It was after about 2.5 months of all of this that I went to see a GP, who put me on Zoloft to see if it would help. I was incredibly skeptical, as I don't believe anxiety alone would cause all of these residual symptoms. I had been googling everything, at one point I was convinced it was labyrinthitis, the next week Chronic Subjective Dizziness, and the week after Disembarkment. Basically anything that could cause the rocking sensation, I was convinced I had it all. Well after being on the Zoloft for a few weeks I actually did feel bettter, like I would say I was at 90% better. I was able to live again. I would say over the next 1.5 years I was at at least 90% most days, with some dizzy spells where I would feel like a pre falling sensation, that would quickly disappear and nothing other than more frequent headaches, and a constant fear of the dizziness returning as my symptoms. I had been on 50 mg daily, a fairly low dosage from what I understand.

Well, fast forward to November 2016. I went off the Zoloft in June of this year, as I had been doing better, but didn't think I needed the meds anymore. I had gained some weight from the meds, and wanted to try and work off of them. So officially in June I came off the Zoloft. I had been doing fine for the most part, with the occasional fear of the condition returning, and brief dizzy spells. Before starting Zoloft last year, a neurologist had recommended that I have an MRI to rule out anything sinister. Well after feeling better, I figured I didn't need to, but went ahead and had one done August 2016, as I was still having headaches regularly. The neuro said it looked clear, and he didnt' notice anything unusual.

Fast forward to November 4th this year. I had just returned from a week of Jury Duty, which had been fairly stressful, and I had two concerts planned for the 6th and 7th of November. They involved a lot of driving back and forth, as they were both out of town. On the 6th I hit the road for the 4.5 hour trip to the show, and made the 4.5 hr drive back that night, got home around 5 AM and slept for a few hours. Woke up and drove the 3.5 hours for the next one, and right back again that night. This is where it all went downhill. After the first night, I had noticed that I was feeling that brief rocking sensation again, but figured I was just tired from all the driving/lack of sleep and I could sleep it off. Well over the week it didn't seem to go away. On Novebmer 12th, I was taking my gf out for her birthday dinner, and noticed I was having really off feelings, felt like things weren't steady under me, things kind of seemed like they would fall briefly, and I was having anxiety attacks again. Ended up leaving dinner early and just going home to get in bed. Over the next week it only got worse, the weekend of the 19th I had a relaxing weekend planned with some friends out of town, so the gf and I made the trip up there, even though I was still feeling awful. I spent the whole weekend in bed, feeling fairly sick overall, burning a low grade fever most of the weekend, and the rocking was still there. It was at this point that I noticed something that has stuck with me the whole time. The rocking sensation is at it's absoulte worst when I have my eyes closed, sitting/laying down with eyes closed makes it feel like a full on rocking/swaying. I have been to see an ENT who said it didn't look like anything initially was wrong, he checked out my MRI from Augusta and said he didn't notice any buildup of fluid or anything. The audiologist in office put me through a series of hearing tests that all came out clear, I'm assuming to rule out Meniere's. I have to follow up with them in a week for an ENG test...which I am terrified of, they're going to make me dizzy again to test and that's what I'm most worried of.

List of symptoms I'm still dealing with as of today:

1. Feeling of disequilibrium/rocking/swaying sensation(made worse with eyes closed)

2. Trouble focusing, eyes feel like they take a second to catch up with where I move my head

3. Fairly frequent headaches, actually had a migraine headache for two days this weekend.

4. Anxiety/panic attacks returning, sporadic jump in heart rate, indigestion, same symptoms I had last time the anxiety was bad.

5. General fatigue/malaise, I sleep way more than normal and am still tired all of the time.

6. One small one my gf noticed, is that my pupils seem to be pulsing. They are constantly changing size, but only slightly

I haven't been able to do really anything I used to, I wasn't overly active, but I had been getting back into skateboarding/disc golf/hiking which I hadn't done for years. All of that came to a screeching halt with this second bout, I have been making myself go for at least 1 or 2 10-15 minute walks a day, as I spend most days at work sitting in front of a computer.

Can someone please let me know if you're going through similar things? The most terrifying part is that I can't find anyone who has this same issue, especially regarding the rocking being worse with eyes closed. I have convinced myself every other week that I have something new, Mdds, VN, PPPD/CSD, Anxiety. I just dont' know what to think anymore. 

1 like, 36 replies

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  • Posted

    If you are having eye movments this sounds like more BPPV than a Upper Respiratory Infection. Go see an ENT!
  • Posted

    Hey Colin

    Your story sounds just like mine. I've had 2 bouts of Labyrinthitis. The first bout lasted 2 years but the 2nd only 4 months. I was on Ciprolex and found it helped with the anxiety and my dizzies. I would call the rocking sensation 'wonky head and also cotton head' because it was hard to focus my eyes or concentrate. Vestibular rehab is what you need to help your brain compensate. Find a therapist who is trained in vestibular rehab.

    Good luck!!

    • Posted

      Thanks so much for replying. I'm going to ask about VRT when I go back for the ENG test at the ENT appointment on the 12th. If you don't mind me asking, how long would you say it took you to start feeling better with the 2nd bout? Are you feeling better these days?

      Thanks,

      Colin

    • Posted

      My 2nd bout lasted 4 months .. i think its because I knew what to do....started on the rehab exercises immediately and started taking the Ciprolex 10mg. I was panicked because it lasted so long the first time but it got better so much quicker..thank God!!

      I am about 98% better.... i had 47% damage to my balance nerve in my left ear as a result of the virus that caused Labyrinthitis. There is no way it will ever be 100% but i can function very well. Walking in the dark is harder now. I can only sleep on my left side. I wouldnt go on a rollercoaster but i can live with the remnants of the illness. I want to get off the Ciprolex because i have gained weight i don't want but i am fine otherwise!

    • Posted

      Hi Debbie,

      ?Did you have any feelings of derealization?  Where you feel like you're almost outside of yourself and it causes you to feel like you're dying or falling into unconscisness?  That feeling is coming back to me very badly the past couple of months.  Did Ciprolex take away that derealization feeling if you did have it?

      ?I was told I have vestibular neuritis in 2014 and the symptoms started in March 2012 right after a sinus infection.  I feel so defeated.

      ?Thank you.

    • Posted

      Hi Nikki,

      I can't speak for Debbie, but I know that the first time I had what I believe was VN in early 2015, I had the constant dizziness/depression/derealization for around 4 months, until I started the zoloft. I was on 50 mg for a year, and honestly I think it may have been what got me out of the endless rut I was in. I had read a lot of studies about anxious people sometimes developing chronic symptoms, even after the initial virus/acute phase had ended, and how SSRI's had shown to be effective in treating them. I am always hesitant to use any medication, and I hate the idea of being on something long term/permanently. I would honestly say though, if you're still feeling as bad as it sounds, and you haven't tried an SSRI, it might be worth bringing up to your Doctor. I was on a fairly low dose as far as Zoloft is concerned, but it's worth a shot to look into.

      Hope you find peace through all of this.

      -Colin

    • Posted

      Hi Colin,

      How have you been doing now?  I hope the Zoloft is still working well.

      Can you please let me know if you had any vestibular loss?  It would show on caloric testing or the vemp tests.

      Thank you 

      Nikki

  • Posted

    Hi Colin, I have VN with nystagmus so my eyes were "jumpy", couldn't focus at all in the beginning but I too started rehab excercises and my eyes are much better Make an appt with a Neurologist . Good luck!

    • Posted

      Hi Angela,

      Thanks for the response. How far along are you with VN, and how long have you been doing the VRT? Did it get much worse before it started to get better for you?

      Best,

      Colin

    • Posted

      Hi Colin,

      I started in April so 9 months in. I didn't get any help until August with VRT. I did it for a few weeks but i joined a gym as well as walking on a treadmill helped. I was told it would get worse before i got better but to be honest, I didn't notice any change . However, my eyes are have definitely improved but i'm still dizzy when walking. I really should start VRT again in order to hoefully reduce my dizziness. Hope this helps.

  • Posted

    I can relate to some of the symptoms you are having, I can't tilt my head back to put drops into my eyes without swaying and falling backwards. I was toild by my doctor that I haved viral  Labyrinthitis only because I had the symptoms of vertigo but no cystals in the ear. I though it wouold go away completely but after joining this sight I read about people having it years. I don't spin standing up uless I stand up from a sleep too fast, but when I go to bed wmy head hit the pillow my eyes tumble for a few seconds.

  • Posted

    Just wanted to give a quick update on this.

    So far I have not fully recovered, my symptoms have not gotten worse necessarily, but have changed somewhat. I'm no longer as bad with my eyes closed, or when sitting or standing, however I have more of what I would describe as false sensations of being pulled/movement. Sometimes it will feel like the ground is falling away from me very briefly, or that I'm quickly being pulled one direction. I've also noticed that if I stand very close to something and try to look at it it's almost as if my eyes are constantly readjusting, almost like zooming in and out on what I'm trying to look at, which then makes me even dizzier.

    The main point is I got my ENG tests back from the ENT, and he said they noticed some Nystagmus during the testing. The caloric test came back inconclusive, but that they did notice some abnormality, just not enough to diagnose. He did say he was pretty sure it is not Menieres, as I got a near perfect score on the hearing test. With that in mind, and the fact I've already had an MRI earlier this year to rule out the more serious stuff like MS/Tumor, I have a working theory that I'm going to take my neuro later this week.

    Basically, when I first got sick in Feb. 2015, I think my body was struggling to compensate, I think this is what caused the symptoms to continue for the 3 months or so. Once I started the zoloft I was about 90% on most days for the full year I was on it, with periods of feeling dizzy sometimes. After I stopped the zoloft I noticed I had what I would call motion intolerance, after flying/driving long distances I would feel vertigo/off balance, but usually no more than a day or so. I had never had any problems like this before I got sick, and didn't have them while on the zoloft.

    My question for all of you is to please read over this theory that I have going, and let me know if you have anything similar, or if it's even plausible: Basically, after ruling out what I have ruled out so far, and the fact that the ENG showed some abnormality, but not enough to diagnose, my guess is the infection I got in Feb. 2015 was likely Vestibular Neuritis, and my brain never compensated correctly, probably due largely to the extreme anxiety I was going through from the symptoms. The zoloft in my opinion suppressed the symptoms, but never helped to correct this poor compensation, which is why my eyes have been much more strained since then, and I've been getting headaches constantly, even when on the zoloft. I think after I stopped these motion intolerance symptoms were signs of the poor compensation showing up, and when I got sick this november it all triggered a relapse. Does this sound like something realistic to anyone? And if so, would Vestibular Rehab be a viable option at this point? Is it possible to retrain my body to balance itself?

    • Posted

      Yes! Vestibular rehab is what you need. I experienced something very similar. I was diagnosed with VN as well. In order for your brain to learn to compensate, the rehab exercises are ideal. The drug you are on helps with anxiety which is huge but when you stop it without rehab, you are likely to relapse.
    • Posted

      Yes sounds familiar. My eyes are better but still have nystagmus when i walk . I've not been given any medication at all just VRT plus i joined a gym too . I'm noticing improvements ,so much that i've now gone back to work. Try VRT . its worth a go . Good luck!

    • Posted

      Hi Angela,

      Thanks for responding on this. I've been trying to make myself go for at least 2 or 3 little 10 minute walks at work to keep moving. Thinking about trying to start running again, but still too scared to overexert myself.

      If you don't mind my asking, how long were you having vestibular problems prior to starting the VRT? Would you say that you are mostly improved from where you were when you started, or is it still largely impacting what you are able to do?

      Thanks,

      Colin

    • Posted

      I started in April 16, which was quite bad for first few months. Nausea,dizziness and nystagmus. It wasn't until i saw a consultant that i heard of VRT. Thinking i would see a therapist weekly or something (ha ) ...no, there is the exercices you need to do at home! It must have helped because like i said, things have improved. After Christmas i will endevour to start again and get back to the gym as I don't want to feel like this forever! I would start gentle excercise, walking etc . Its best to keep active apparently,but don't overdo it.

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