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Vertigo and TMS

Discussion in 'General Discussion Subforum' started by sacolucci23, Sep 17, 2017.

  1. sacolucci23

    sacolucci23 Peer Supporter

    Hello everyone,

    I've had two distinct times in my life where a weird type of vertigo was brought on during periods of high stress. The first time I was living alone (against my will) but due to circumstances had to move out on my own. I always suffered from anxiety/GAD which I am sure is a result of trauma in my childhood (mentally ill mother, narcissistic family, parents divorced from an early age, etc.). I was working full-time, trying to get through school and had to care for a sick dog but on top of this, was living in a constant state of fear and anxiety due to the fact that I did not want to live alone. I was absolutely petrified and literally would not fall asleep at night or at best, sleep with one eye open.

    I started to feel "off balance" like I wasn't comfortable with two feet on the ground. I started to see a psychiatrist because instinctually I knew I had some emotional problems that had ramped up my anxiety and made living alone difficult. Then, out of nowhere, one night I awoke with an intense rocking sensation inside my body with dizziness. I could walk and talk and eat but there was a constant pendulum type sensation running through my body. The emergency department said it was probably labyrinthitis, an inner ear infection, however, my own GP was highly skeptical of this diagnosis because the dizziness was subjective. Meaning, I didn't feel as if the world was spinning around me like true labyrinthitis feels instead, I felt as though I was rocking. He suspected breakdown or hysteria of some sort. Within two weeks it subsided. Oh, and during that time I consulted an ENT who could find nothing wrong.

    After that, I met my now husband and we started dating. Life seemed good - I no longer felt lonely and most of the anxiety had subsided. (One thing I realize that I have major fears and phobias about being alone, something I need to work through).

    Over the next six years, I didn't experience vertigo except on one occasion where we went to Cuba and I felt off balance again. When I got back I made an appointment with my GP and ENT who again, couldn't find anything wrong. It eventually went away. But when it occurred, I had these sensations of the room tilting when lying down, not being stable.

    One year ago, I had my second child. When I got home after being at the hospital for 2 days, I had an anxiety attack because I thought I couldn't feel my legs. I had an intense fear that the epidural may have permanently paralyzed me. I knew this was irrational but I couldn't understand why my body was having physical anxiety. You see, even though I had anxiety, years of having panic attacks had made me a veteran when it came to not having them. I could control my anxiety on most occasions and considering I hadn't had a panic attack in over 10 years, this was strange for me.

    When I was pregnant with my second child I also cut off any communication with my mother. I had been working through boundary issues after a huge argument over my first child. I worked a lot when I was pregnant so I didn't really feel the absence of my mother - and it wasn't just my mother - I had cut off my entire mother's side of the family, too.

    I felt very isolated with two kids and no mother and no help. I also had a nanny which I felt guilty about because I hired someone to watch my baby so I could work as I am self-employed. The guilt took a toll on me also.

    Anyways, I eventually started to feel as though the world was on my shoulders. I would call my husband yelling and crying in the mornings pleading that I couldn't handle all the stress - kids, dog, work and no sleep, etc. Plus, I was still having random anxiety attacks here and there which I didn't understand.

    One night, I awoke from bed after having gone to bed fairly late and felt extremely dizzy. I was so disoriented I couldn't even make it down the stairs so I went back to bed. After that night, I felt very strange. A large amount of brain fog, headaches, and these random intense dizzy spells when tilting my head to the right or looking down. I ended up going to the ER and they said I had BPPV, a type of positional vertigo that occurs when the calcium crystals in your ear become dislodged and end up in the semi-circular canals. A benign condition albeit a truly terrifying one. I started to become extremely depressed and insecure within my own skin. Scared to drive, scared to watch the kids alone, scared to live!

    I was treated with the Epley Maneuver and the true spinning eventually subsided but I constantly am left with this off-balance feeling. Rocking, tilting - like I am not right! My left ear also feels clogged at times and randomly pops or equalizes in the day. I also have been getting a slew of migraines every 3 days. I suffered from migraines in my life, yes, but not to the point where they are every three days! It's horrible.

    I've been to the ENT 3 x - hearing tests were normal. He could explain the BPPV but he has no idea what it is now.

    The neurologist seems to believe it's Migraine Associated Vertigo but I find it hard to believe. I've never had vertigo with my migraines and if I understand correctly, MAV is episodic, not constant.

    CT scan was also normal. Blood test normal. Neurological exam normal.

    I went to an Osteopath and Chiropractor who says I am subluxated in my Axis Vertebra and the therapy has helped a bit but I still constantly feel off balance like I am swaying and tilting.

    I started doing Dr. Schubners program and the left ear fullness has seemed to have died down a lot but headaches are still there - they have shifted sides now. Six months of only left side which felt as though they were coming from within my ear. Now at least they are out of that area.

    Does anyone have any advice?
  2. Gigalos

    Gigalos Beloved Grand Eagle

  3. sacolucci23

    sacolucci23 Peer Supporter

    Thank you so much for sharing. This sounds exactly like me and I can resonate with the dizziness when turning head side to side as well as the "internal shifts". The only reason I don't buy the Migraine Associated Vertigo diagnoses is that this started after I got BPPV and not before. Also, 6 years ago I believe it was stress that triggered it - living in intense fear.
  4. Gigalos

    Gigalos Beloved Grand Eagle

    I suffered from PPDS a couple of years ago. I had a tight and/or painful upper back and neck, sometimes giving me head aches. I remember a couple of occasions when I raised my head a certain way and things started tilting, a weird kind of semi-spinning, difficult to describe...
    I don't know about BPPV and how legitimate such a diagnosis is. I only know that my problems were directly related to anxiety and stress.
  5. sacolucci23

    sacolucci23 Peer Supporter

    They say BPPV is when the crystals in the inner ear move out of place and land in the semi-circular canals. They send false info to the brain about where we are in space. They also say once gone, you go back to normal which hasn't been the case. It sounds more like my brain is now on high-alert and the anxiety from it all has triggered this.
  6. Gigalos

    Gigalos Beloved Grand Eagle

    So what would your doc say if you tell him that you want to approach it as an anxiety/stress driven thing? Maybe he is willing to support you in that, since he doesn't seem to be able to offer you anything better.
    Tennis Tom likes this.
  7. sacolucci23

    sacolucci23 Peer Supporter

    He would be ok with it since I have a long history of GAD, panic disorder and health anxiety. Just out of curiosity: What I find is that when I relax and finally feel relaxed the feeling gets stronger - like for example, this morning I meditated for an hour and I am very relaxed but sometimes, this makes the dizziness feel worse.
  8. Timbercat

    Timbercat Well known member

    Hello Sacolucci23 and Gigalos. I am following the thread you started and have read the ppds post. This describes me so very well. I just got back from an urgicare where I went for some help with terrible left ear pressure and balance problems. Instead I was told I should go to the ER since they see nothing wrong with my ear and I reported headaches, nausea ear pressure and balance I issues for one week. They even wanted to call 911 to take me and told me not to drive! Curiously these symptoms have come on this past week when I started the sep. I decided to drive myself home and stayed on the phone with my sister until I got home. Now I just want to lie on the couch which I guess isn't the best thing to do. I also hate being alone...especially if I don't feel well or if I am really scared. I am going to try to walk outside. The hardest part for me is not worrying when this stuff happens to me. I can sometimes hardly walk a straight line - that is hard to ignore!
  9. plum

    plum Beloved Grand Eagle


    Please be mindful. Don't ignore advice to enlist the help of emergency services. It is always best to rule out serious problems before assuming it is TMS. Please don't be reckless with your health.

    Plum x
    Gigalos likes this.
  10. Timbercat

    Timbercat Well known member

    I have seen so my doctors...last CT scans of my head were May an July this year. Last year had MRI of head 2 of them and a full work up by ENT complete with all types of tests to rule out inner ear problems. All of these tests were negative. That is why I didn't want to start again today. Just having a really hard time with this.
  11. sacolucci23

    sacolucci23 Peer Supporter

    I have had a CT Scan, bloodwork and have seen a neurologist, ENT, naturopath, audiologist x2, etc. Except for diagnosing me with BPPV (all of them said based on my symptoms there was nothing else it could be), there is nothing else they think I have. The neurologist seems to think it's MAV (Migraine Associated Vertigo) however, he doesn't know the history I have with GAD & panic disorder and also, this only started happening after the BPPV.

    I know BPPV itself is due to oxygen deprivation because even though 50% of cases are idiopathic or unknown, those whom suffer from migraines do get BPPV. Neurologists explain that due to the oxygen deprivation that migraines cause, it pushes those ear crystals out of their place. This is what really makes me believe disorders such as Benign Paroxysmal Positional Vertigo or BPPV are TMS.
  12. Gigalos

    Gigalos Beloved Grand Eagle

    Timbercat. At least don't drive when you are experiencing it for the safety of yourself and others. I understand why you didn't want to start again, as your symptoms were the same as before and they couldn't find anything then either.

    Sacolucci, I think it would be wise to tell your neurologist about your history (if you have to meet him that is). Otherwise I would still suggest asking your doctor to help you go the mindbody route with this.

    both take care!
    plum likes this.
  13. Timbercat

    Timbercat Well known member

  14. Timbercat

    Timbercat Well known member

    Thanks for response. I too have been diagnosed with BPPV. The exercises I was given to help this arent working this time. I am going to call my MD shortly and find out if she will see me. If she also tells me to go to the ER then I will. And no I wont drive like this. I feel like I cant take anymore migraine meds or I might be giving myself rebound headaches. I still feel this could all be tms since my low back pain is better - that coincides with all this getting so bad. Thank u again.
  15. MindBodyPT

    MindBodyPT Beloved Grand Eagle

    Hi there,

    I'm so sorry to hear you've been suffering from vertigo! That is no fun at all. That being said, as a PT who specializes in neurological issues, I want to clear one thing up- TRUE BPPV is a completely mechanical/physical phenomenon that is not TMS. If one has true BPPV it will be cured by the Epley maneuver. It is crystals coming loose in the inner ear canals and has a very easy fix. If Epley didn't fix it it is something else.

    Migraine associated vertigo is very different and is likely TMS, as are other forms of vertigo. Vertigo can be caused by lots of things, some TMS and some are not. Talk to your neurologist about the GAD.

    Sounds like your case is likely TMS caused and not BPPV. But lots of doctors get this confused, FYI! It can be super tough to find the cause of vertigo, it's something I'm studying now as a PT. Hope this all made sense and helps you realize that yours is likely TMS and not BPPV :)
    plum likes this.
  16. sacolucci23

    sacolucci23 Peer Supporter

    Hello MindbodyPT and thank you for responding to me. Initially, I know I had BPPV. It would happen when I tilted my head to the right to do things like talk on the phone or reach over to the passenger seat to put my wallet in my purse. I would get a spinning/dizzy sensation. I went to the chiropractor and they laid me down to see if I would spin but I didn't so they assumed it was my neck. In reality, they didn't do the dx hall-pike test to confirm so they were erroneous in their diagnosis. I believe they made my BPPV at the time worse because they used this vibrating machine on my neck and after that, all hell broke loose. The episodes of positional vertigo became closer together and I ended up in the ER. Not one person did the dx hallpike but based on my symptoms were sure it was BPPV. They sent me home with the Epley worksheet.

    When I laid back, head hung over to the right, I waited for 10 seconds and the spinning would come up rapidly. It would subside in about 10 seconds and then I would turn, etc. Eventually, the true spinning subsided but since then I am left with constant dizziness. I have gone to a vestibular rehabilitation therapist who then, did the dx-hallpike and there was no spinning so she confirmed it was gone. But what stumps me is when I look down now or to the side or even sit at the computer it sometimes feels like I am "about to spin" - it's strange. And when I talk (as I move my head around) I get dizzy bursts. I also have a constant sense of unsteadiness. According to the standard tests, I no longer have BPPV, so what does that leave me with?

    Again, the neurologist says it now sounds like Migraine Associated Vertigo (dizziness/vertigo, room tilting, quick spins, headaches on left side, ear fullness on left side, no hearing loss). I do have some faint tinnitus which is not characteristic of MAV.

    I have also developed extreme anxiety over this. I am always scared I will "spin out" even though I haven't since back in June when I technically cured the BPPV. I got up from that and OMG, the world was spinning. The ER doctor said it was a great sign that the particles had moved. But what do I have now? It is weird! Since you deal with vertigo can you help me understand MAV? I heard MAV is more episodic and not constantly...
  17. Sonic

    Sonic Peer Supporter

    After suffering from this for 2 years now I can relate to what you are saying. I only had 3 'spinning attacks' but have had chronic dizziness ever since.

    It's a nightmare trying to get a diagnosis and I give up after a year. I think whatever happend (if anything) has long gone and cleared up. I think it is just anxiety now that is causing it for me.

    I like Claire Weekes explanation in that it's tension being applied to the semi-circular canals in your ears that is causing dizziness. since I have tension in shoulders, back and legs then I'm most likely to have it in my head.
  18. sacolucci23

    sacolucci23 Peer Supporter

    Thanks Sonic. They can't really find anything with me either. They say the BPPV is gone. Can you tell me which book that was in? Or where Claire Weeks talks about dizziness?
  19. Sonic

    Sonic Peer Supporter

    The book is called 'Essential help for your nerves' which is 2 books in one. The part I'm refering to is from'peace from nervous suffering' under the heading 'Giddiness'

    It's just a brief description of how dizziness is a symptom of nervous illness. She does say 'spinning' vertigo can also be a symptom of this also although rare.
    MindBodyPT and Gigalos like this.
  20. sam908

    sam908 Peer Supporter

    I experienced my second, severe BPPV episode three weeks ago (first was two years ago). The rehab therapist who initially helped me and who performs the one-time Epley Maneuver, was on vacation, so I did the Brandt-Daroff exercises at home for three days, and it was gone. Nevertheless, despite the assertion in #15, above, that BPPV is not TMS, I do believe - - in my case, at least - - that there was a TMS aspect at work. At the time, I was grappling with an issue that was causing me to be "off balance."
    Kreacamp and sacolucci23 like this.

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