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Dizziness and vestibular disorders

Discussion in 'Support Subforum' started by sacolucci23, Jan 21, 2018.

  1. sacolucci23

    sacolucci23 Peer Supporter

    Hello everyone,

    I have been slowly getting better (but still struggling) with dizziness since June of 2017. I developed BPPV (benign paroxysmal positional vertigo) one night and I haven't been the same since. My symptoms came in the midst of working extremely hard with my business, trying to hold it all together at home, and sleeping very little. I also had a newborn around this time which was emotionally and physically taxing in addition to everything else. I've been to many specialists and there is nothing they can find wrong. I have also had an MRI of my brain, which was normal.

    Recently, I traveled to Chicago to meet with an Oto-neurologist and had some testing done there. Some of the testing revealed some slight nystagmus (involuntary eye movement) which suggested I had some right ear imbalance. Upon consulting with another professional who also runs a dizzy clinic, about my results, he told me the amount of nystagmus noted was pretty much "ignorable" since it was very mild. The main test, which is called the video head impulse test, measures the semi-circular canal function, and it was normal. Because BPPV effects the semi-circular canals (crystals getting dislodged and migrating to the semi-circular canals), it's evident now that I longer have BPPV and it's also evident that I don't have any other disorders of the inner ear, either.

    One of the results picked up some cervical nystagmus, which indicates some possible vertigo stemming from my neck and I'm not sure if I should explore this road or if it is still TMS.

    You see, I am still having some positional dizziness as well as visual vertigo (things just don't seem fixed). The last seven months have been very stressful and I haven't felt like myself in a very long time. I started to develop a fear of being out alone or with my children, driving, etc. Most of my fear was centered on there being something terminally wrong with me or the dizziness being a result of Meniere's disease but since these diseases have been ruled out, I am starting to feel a bit better.

    My question is this: I believe in TMS - I do, however, the vestibular system seems to be extremely complex. I had BPPV which was confirmed by the Epley Maneuver and could also have been a variant of TMS but 95% of people are cured by performing the Epley Maneuver. And, here I am, seven months later with dizziness that cannot be attributed to anything.

    The doctor who did my testing said there seemed to be some right ear imbalance after the BPPV but he couldn't confirm any damage since my testing was normal. His diagnosis was a mild migraine disorder.

    My symptoms include:

    Mild hyperacusis
    Mild tinnitus
    positional dizziness
    floating feeling
    disorientation in supermarkets or busy places
    and just a general unsteadiness (although all my balance testing is normal).

    So, my question is would this fit the bill for TMS? The reason I am confused is my neurologist suggested a psychosomatic disorder would not cause nystagmus. But then, the gentleman who runs the dizziness clinic said the amount of nystagmus I had was pretty much "ignorable" because it was mild even with wearing medical goggles, which pick up eye movement.

    Any guidance would be greatly appreciated.
  2. colls100

    colls100 Well known member

    Pretty much same story as you. Had vertigo and didn't feel the same since, no hearing issues but major floating/lightheaded, supermarket makes it worse etc. And all my balance testing normal too.

    I spent a lot longer than you investigating this medically. I can tell you it's TMS.

    I think we had vertigo, panicked and we're stuck in a 'sensitised' state. Listen to some Claire Weekes, try to stick to this website and not google elsewhere.

    I can't say I'm recovered, and you'll probably see from searching this forum I have struggled with the TMS diagnosis and feeling overwhelmed but I've exhausted all other options and I now KNOW it has to be TMS. Don't waste any more time investigating medically.

    Do the SEP here, and do things that calm your nervous system (exercise, meditate, breathing exercises).

    I'm making progress, but I reckon you'll sail through recovery given you've had a lot less time to become normalised in this state.

    Good luck. x
    Huckleberry likes this.
  3. sacolucci23

    sacolucci23 Peer Supporter

    Thank you for replying. It's hard to come to terms with TMS sometimes or that a set of symptoms is TMS but really, this seems like the only thing possible at this point. It doesn't seem like anyone knows.

    Yes, being out in larger areas like the grocery store is a challenge. I think I am traumatized by what happened, too.
  4. colls100

    colls100 Well known member

    I've heard people say anything that can be described as chronic is TMS.

    In some ways it's the most frustrating diagnosis ever, you can't be diagnosed with a test and there's no tablet or procedure. You have to do the work, relentlessly.

    But it's also the best. It's like a journey of self-discovery and has positive impacts on your whole life not just the symptoms you have.

    Like I said I'm not cured but I know I have TMS. I know it's hard to believe and you want proof. You'll get your proof you just need to have faith and do the work.

    Please give it a try don't waste years of your life like me trying to find a cure which will ultimately be a placebo and you'll probably develop other pains and symptoms. You won't even realise it at the time but I reckon you'll find yourself back here anyway.

    Naturally we don't want to look inside ourselves at what were really feeling but it's the key.

    There so much support for you here if you choose to take that leap of faith. Like I said you're years ahead of me in terms of how long we've had symptoms and I'm doing great.
    balto and MWsunin12 like this.
  5. MWsunin12

    MWsunin12 Beloved Grand Eagle

    Thanks for writing about this. I'm going through fullness in my left ear and Eustachian tube feeling open all the time and come and go tinnitus. I can tell my ear isn't hearing as well. And, if I'm in a crowded place or store, it vibrates my voice back into my ear. Like when you have a cold.

    Every story I've ever read on ear issues, balance issues, and dizziness for women has NEVER been helped by any specialists or doctors.
    Many, many women report on these symptom all over the internet.

    I'm going to stick with TMS. Probably one of the perpetuating factors of these symptoms is the waste of time and $$ on specialists.
    You might want to take a natural calm type of supplement for a bit. I know the principle of TMS is to let go of these types of things: acupuncture, supplements, etc., but it helps me to have a platform of calm to do the TMS work from. I take an herbal combo from Grandma's Herbs, called NaturallCalm. You can find it online.

    It sounds to me like you have more than a full plate of new baby, business, and keeping it all together. Be gentle with yourself.
    Let's choose to not be afraid of this. I can tell my fear make it ratchet up to high.

    My mother needed hearing aids when she got to her 60's. As I'm approaching that, I think I psychologically bought into the genetics thing.

    Ah, life is deep and complicated....and we must remember to make it joyful as well.

    Thanks for posting. It helps to confer with others.
  6. colls100

    colls100 Well known member

    Claire weekes says a sensitised body takes at least 8 weeks to normalise.

    The best thing we can try to do is make the TMS work part of our daily lives and actually not care whether we see a reduction in symptoms or not.

    I'm trying to judge my process on how much I care about my symptoms.

    It's hard for us because there's a lot of talk about pain which sometimes doesn't relate for us but if it helps I'm working with Georgie Oldfield weekly and she has never expressed a moment's hesitation that my symptoms of dizziness are TMS/stress induced. She has helped a ton of people with our symptoms.
    MWsunin12 likes this.
  7. MindBodyPT

    MindBodyPT Beloved Grand Eagle

    Hi saccolucci,

    Hope I can help you interpret this again! I actually am working on further specializing in the treatment of vestibular disorders and can provide some insight.

    It's great you were worked up by some specialists and that they confirmed no vestibular disorder. It is my belief that BPPV is NOT TMS...it is mechanical/structural and easily cured pretty instantly with the Epley and other maneuvers. Also, the head impulse test you mention actually doesn't test for BPPV...it tests for issues with the vestibular nerve in the inner ear, so it is great that yours was negative! You can rest easy that your inner ear and brain are normal.

    As far as the mild nystagmus- I believe this to be "within normal limits" based on what your doctor told you, a "normal abnormality" as Sarno would say. There is actually no such thing as "cervical nystagmus" aka nystagmus due to issues in the neck. There is a diagnosis known as "cervicogenic dizziness" aka dizziness due to severe tightness of neck muscles but I believe this to be TMS in chronic form considering it results from neck tension. There are actually no diagnostic tests to confirm this like there are for BPPV, Menieres or other structural issues.

    In terms of your symptoms- your neurologist is right, TMS would not directly cause a nystagmus to occur. However, the nystagmus may very well be an incidental finding that is totally unrelated to the experience of dizziness. This is much like how herniated discs are an incidental finding on MRI for folks with chronic back pain.

    Your collection of symptoms don't match any specific vestibular disorder...the positional dizziness is easily a conditioned response (it's my personal belief that cerviogenic dizziness is TMS with conditioned response component). The specialists would have picked up on something.

    It sounds like this is a case of TMS at this point, your docs have ruled out other diagnoses so you should be safe to proceed with your TMS healing strategies! I actually worked with a patient with pretty similar symptoms to you minus the tinnitus , he had an old stroke with symptoms pretty much resolved but was having TMS dizziness and other things (all medical testing was normal).

    It's understandable you're feeling scared about all of this, I hope that interpretation gave you some reassurance to move forward with your TMS work. Please let me know if you have any questions!
  8. Huckleberry

    Huckleberry Well known member

    I have gone through two lengthy periods of having every symptom bar the tinnitus you describe in your OP. What this honesty sounds like is a mixture of derealisation and depersonalisation (the two are bedfellows) and is generally the result of an over sensitised nervous system. What basically happens is that your nervous system just becomes overwhelmed and closes down specific actions...this is of course just a safety valve for the nervous system and is totally harmless and benign. I’d remember going into a supermarket and being totally overwhelmed by everything...the noise, colours, people’s faces the whole lot..I’d become floaty and feel like I was walking on cotton wool. Of course, this is scary and the fear just pours petrol on the fire. The key here is your balance tests are normal. This is subjective. I was exactly the same...I would feel out of it, dizzy, floaty and unsteady but to anyone observing me I would be totally fine. There is nothing objectively wrong.

    As mentioned I’ve gone through 2 major spells of this. The first lasted over a year...I just woke up one morning and it was gone, literally totally vanished. It then returned about 18 months later but I was mote wise to it and accepted the advice to just ride it out calmly which I pretty much did. In the end I just allowed the sensation to be with me and it went a lot quicker that time. Yep, I initially feared MS and neuro nasties but once you understand what’s going on and lose the fear you start to see it’s a subjective experience and not an objective clinical thing. Hope this helps.

    Edit. Just to clarify. The supermarket etc did seem to exacerbate the symptoms but the dizziness, unsteady feeling and just feeling off symptoms were there all the time. I remember being convinced it must be structural or whatever as it was even there if I woke up at night to go to the loo or whatever.
    Last edited: Jan 22, 2018
  9. sacolucci23

    sacolucci23 Peer Supporter

    Firstly, thank you soo much for replying and clarifying. I got so excited before reading to the end, I wanted to ask you if I could send you my results in a private message? Could you help me with interpretation?
  10. sacolucci23

    sacolucci23 Peer Supporter

    Thank you for replying! Yes, this is exactly how I feel. No one can see anything wrong with me but on the inside a floaty feeling. I also feel as though my eyes play weird tricks on me also. But when I had BPPV, sometimes, I would get this intense dizzy rush just tilting my head. But after it was gone, self-treated with the Epley, the positional stuff just remained. It's almost like a type of residual dizziness that never went away.

    I was in Walmart the other night with my children and my goodness, it felt like I was on a psychedelic drug.
  11. colls100

    colls100 Well known member

    @sacolucci23 Listen to Claire Weekes, hope and help for your nerves I think it's called.

    Cause of initial symptoms = STRESS (emotions being repressed, subconscious creating a distraction to avoid the explosion of emotions which it considers to be very dangerous)

    Then we got stressed about the symptoms = FEAR (Claire weekes calls this the second fear. We tense up, think about it constantly and we resist it... and what we resist, persists!)

    You need to RELAX. I had this advice from someone on this forum a couple of days ago and I'm really trying to just let go and think f*ck the dizzy feeling I don't care about it, I accept it's there and I carry on regardless with no fear.

    Long story short, we have the power! We're going to be ok :)

    We just need to consistently stop those fears and thoughts about how much we hate the dizziness and the worry about what it could be. That's what is perpetuating it.
    MWsunin12 likes this.
  12. Jules

    Jules Well known member

    I had balance problems for nigh on a decade before going through vestibular rehabilitation. I went to two different hearing and balance treatment centers and was told I had 57% balance deficiency in my right ear, but had no explanation as to why. I learned it was TMS, but had no clue back then. If I would have know back then what I know now, it wouldn't have lasted as long, that’s for sure.

    Yes, it is TMS. Just another symptom imperative. I needed to get therapy before I started making any strides, and now I am seeing a TMS therapist to really learn to accept the diagnosis. That may be what you need, as well. If it is, rejoice. You can beat this. It took me many years, but I rarely have balance problems now.

    Good luck and stay the course!
    MWsunin12 likes this.
  13. BinLA

    BinLA Peer Supporter

    Greetings all,

    Thought I'd bring this thread back to life a bit. :)

    Very interesting, and I've run into a situation similar to a few of yours... and frankly despite my years of understanding TMS and anxiety/stress to a large degree, this episode has me feeling pretty rough, and has been a real challenge.

    About 6 weeks ago, I was working out at home and did an inclined pull-up with some heavy resistance added. Strained very hard and stood up to some major light headedness and dizziness. (Heavy lifting not new to me, but this was a heavier set.) It wasn't vertigo but more of a full headed, cloudy, wobbly state.

    I've experienced all of these sensations in small amounts at times over the years so I didn't think too much of it.

    The next day it persisted.... and in following days got worse and started to include some nausea, more imbalance and some fatigue.
    Eventually some other symptoms joined in which I attriubte strictly to anxiety and I won't bother with.

    Flash forward 6 weeks... and it's still pretty strong/constant. It's an "always on" feeling of imbalance, wooziness, almost like a car-sick type feeling.
    Looking certain directions can exacerbate it (downard with head straight... tilting head up from a sideways position, etc.)
    I've found at times I can exhaust easily, which isn't normal for me at all. I've also developed a bit more tinnitus in past weeks.
    (Always had some, stronger as of late.) Brain fog and blurry vision at times... sometimes a bit drunk or drugged feeling in the head.

    I don't have any hearing los I can tell or what I would call vertigo or oddities like noises in ears, etc. Memory is fine and mental functioning
    is fine, ableit stressed. I haven't fallen, it's more a feeling I have to work hard to balance.

    Open spaces (walking outside or in market) also create challenges and more feelings of disorientation, just like others here...
    likely due to the lack of proximation to things the brain can use for balance reference.

    Seeing an ENT today since it has been a while without change. My gut suspicion is that it's TMS/anxiety related.
    But, I have to admit... how it came on shook me a bit. Ironically had it come out of the blue I think I would have been more likely to
    believe it was regular old anxiety/TMS. Having it come during a straining event felt more medical... and we know where the mind goes from there.

    Any thoughts appreicated. Hope everyone is doing well!
  14. Jules

    Jules Well known member

    Bin, I completely understand and can relate. In fact, almost everything that you just described, I went through the same thing. Mine didn’t just come out of the blue either; it actually started with a sinus infection that moved to my ears. I have very small eustachian tubes, so fluid takes forever to drain. However, the day that really started this whole thing, was the day that I was doing an interview for somebody in another city. In fact, I was interviewing Mia Love, who is now a US senator. :jawdrop: But, I was so nervous to be interviewing a politician and I did not want to do it, because I did not like her. I was working at the local newspaper back then, and was really getting tired of all the politics and having to be at the meetings and report, as well as being on call, and let’s face it, reporting does not yield very much money. Anyway, that day that I was to go and interview her, I was so anxious for no particular reason. So, I decided to take an herbal supplement that unbeknownst to me, had a stimulant in it. That set up one of the worst panic attacks in my life. It also set up a medication phobia. I was so nervous about taking anything after that, even a pain pill, or even an antibiotic.

    After that, my balance was off for a better part of a decade. We did every test known to man, and could not figure out what was happening. I even went to a TMS dentist and had an appliance put in my mouth every night, thinking that it was due to TMJ. After a couple of years of wearing that appliance, I ended up with a number of cavities that resulted in having to get crowns put on my teeth. Now realize, that on top of this balance problem, I still had all my other pain, but the focus was definitely on the balance.

    I did rehabilitation with a physical therapist to regain back my balance, but never found the exact reason for it until I read about TMS. I realized at that time I had been holding back feelings about not wanting to be a journalist anymore and not wanting to interview Mia, but knowing that my kids were young and we needed the money, I did it anyway. However, a few months later, I did quit and that started in with horrible agoraphobia for five years. It wasn’t until years later that I realized why I had the agoraphobia. And very interestingly, when I had anxiety and panic, my pain was much reduced. But, I even remember saying this, I would rather be in pain then have another panic attack and Viola, TMS.

    So, my advice to you is to think psychologically, and even if your balance is messed up, do rehabilitation exercises, but don’t treat it as a physical disorder. This is symptom imperative, and at this point if you can’t find anything wrong or the doctor can’t, it will be labeled as idiopathic like mine was. To me, that is a dead giveaway of TMS.
    BinLA likes this.
  15. BinLA

    BinLA Peer Supporter

    Mia Love, first African American congresswoman (R) right? I can see how politics would drive someone to a nervous breakdown lol.

    I appreciate your insight. I'm definitely leaning (like 90%) towards this being another version of the same old same old. (Stress disorder... or you could say TMS or anxiety disorder.)

    Yes, anxiety and panic mask pain. When I was at my worst and would "come down"... I often got headaches at the end of the day when the stress hormones ran out.
    I've made huge strides in the past few years, and as the daily anxiety/panic left... I was left with more familiar old (from younger years) things like IBS and other physical annoyances/pains.

    Honestly, a couple months back.... was hitting some of the best strides I've hit in years. It's been a slow steady improvement. But, having done this while doing a strenuous exercise admittedly is giving my brain trouble, and old messaging is strong right now. So I have to work through it with logic and patience. Proper medical viewpoints (at this point) are IMO fair to underatke as well... as I won't be caught up in the medical loop of "maybe this or that" and the whole carpet-bombing with medications thing. Been there, done that.

    Doc wants me to do a hearing test and MRI. Seems fair enough. Should know more soon, but plan to treat it as the old issues either way.
  16. Jules

    Jules Well known member

    Yep. I would rule out anything medical and then proceed to TMS work if and when you find out from the testing. It can be a loop, believe me, I know, but I have had to admit that it’s TMS and to stop catasterphizing or what ifs for the pain. Let us know when you get results, but in the meantime, don’t stop being active.
    BinLA likes this.

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