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My Story with dizziness/mdds. TMS?

Discussion in 'Support Subforum' started by WIRM, Jan 10, 2020.

  1. WIRM

    WIRM New Member

    Hi everyone,

    Thank you for creating such a wonderful resource.

    Here's my story how I ended up here. Up to 5 years ago life was going on as normal. I had been highly stressed for years. Kids, work, job etc etc. Loading more and more self pressure on my life. I then took a long haul flight and came off the flight feeling like I was on a rough boat. this lasted for more than 24 hours.

    I then happened to google the symptoms and came across mal de debarquement syndrome (mdds). Mdds is a little known condition that typically occurs after a long flight or cruise. Very little is known about it, but the general theory is that the brain gets stuck in a pattern after sustained motion (such as flying or on a cruise). I read and read and the more I read the more scared I got (reading about how some unfortunate people have this for life).

    My fear sent me into a tailspin. This is definitely what I had and I didn't want to become one of those people that had it for life. I therefore went kind of crazy researching and researching. Seeing everyone under the sun. Spending money on consultants like there was no tomorrow. It's only now that I realise the fear was probably fuelling everything. I spent money I didn't have seeing every possible consultant and healthcare practitioner. No-one could help or really knew what to do with me. MRI was fine. Neck xrays were fine. etc etc etc. There was no real good reason for my dizziness. Round and round I went. Trying everything under the sun.

    Over the last 12 months I have been leaning towards underlying anxiety and fear being the major source of my issues. Some conscious stuff, but also some deep stuff, lazing deep in the subconscious. I now

    I should also add that I developed other conditions shortly after the dizziness started. Fatigue. Sometimes bordering on chronic. Double vision. 24/7. Again opthomology/opticians etc have no answers. I now believe I have a dizziness condition know as Persistent postural-perceptual dizziness (PPPD).

    "Persistent postural-perceptual dizziness (PPPD) is a newly defined diagnostic syndrome that unifies key features of chronic subjective dizziness, phobic postural vertigo and related disorders. It describes a common chronic dysfunction of the vestibular system and brain that produces persistent dizziness, non-spinning vertigo and/or unsteadiness. The disorder constitutes a long-term maladaptation to a neuro-otological, medical or psychological event that triggered vestibular symptoms, and is usefully considered within the spectrum of other functional neurological disorders. While diagnostic tests and conventional imaging usually remain negative, patients with PPPD present in a characteristic way that maps on to positive diagnostic criteria."

    Basically PPPD is dizziness caused by the fear loop. Becoming over sensitive and tuned in to the dizziness. etc.

    So a month ago I read Sarno's book and I've been reading through this excellent forum. TMS seems to fit. I know Sarno mentions dizziness as likely being TMS. I still have my doubts, however. For one, I think the double vision seems unlikely to be TMS (even though they can't find any cause - I've had it for nearly 5 years now). Also Sarno's work is very much geared towards back pain and not dizziness.

    Thoughts and advice, welcome. Thank you for listening.
    Neen likes this.
  2. WIRM

    WIRM New Member

    I should add that I believe a big part of my recovery is to break the fear loop. I need to learn to face the horrible dizziness with calm detachment. Easier said than done. I feel like my amagydala has been switched on and I need to somehow turn it off.

    Alan's work resonates, so I'm currently going through it.
    zclesa and Neen like this.
  3. WIRM

    WIRM New Member

    Anyone? Does it seem I may be on the right track with TMS or am I possibly wasting my time with yet another blind alley? Thanks.
  4. nowa

    nowa Peer Supporter

    it seems to me that you are completely on the right track, and I expect the double vision is TMS as well, I hope it is because I get it from time to time... and don't worry, somebody far more knowledgeable than me will answer this post...it can take two or three days sometimes.
    birdsetfree and WIRM like this.
  5. birdsetfree

    birdsetfree Well known member

    I definitely think this is TMS. You have outlined your situation very well and your thorough research has finally led you to the right place. Take a deep breath and dive in!

    Alan Gordon’s program is a great place for you to start. If you want more on the emotional work you could do the structure educational program on here too.

    Pressure and a lack of self awareness and therefore self care, creates the build up of inner rage ripe for TMS symptoms. When you had the dizziness after the flight, your sensitized demeanor from all the stress etc felt more alarmed than necessary. You researched, came up with these scary, chronic diagnoses and panicked. This was the opportunity your mind used to create physical symptoms that would distract you from the chronic stress of the imbalance in your life. Remember the brain cannot differentiate between physical or emotional dangers. Either will trigger the nervous system.

    You have great insight about this already, trust that. You are on your way to getting your life back.
    WIRM likes this.
  6. Marls

    Marls Well known member

    Neen and WIRM like this.
  7. MWsunin12

    MWsunin12 Beloved Grand Eagle

    H Wirm, Wondering if you feel differently now? Did your Mdds go away? A bout of it has been with me for the last 3 weeks. I've had it 3 times before. This is the first time I'm treating it as TMS. It's very true that Google searches can be crazy scary on this issue. But, I do think it's TMS and those who say they've had it for years have perpetuated it with their fear.

    Anyway, checking in with you. Peace.
    Neen likes this.
  8. bluesboy63

    bluesboy63 Well known member

    I would say you're definitely on the right track! I too have come to the PPPD conclusion after decades of dizziness/vertigo (very different). This is prime brain real estate for TMS to hang out in for me since I have documented inner ear issues. At age 5 I lost my hearing in my right ear due to what they told me at the time was nerve deafness. Knowing what I know now, and also knowing that it was a very stressful time in my young life as my parents were going through a bad divorce, it seems more than coincidence that TMS, being tied to the nervous system, had something to do with it. Fast forward 50 years, I have had dizzy spells throughout my childhood which culminated in a horrible couple of bouts with true vertigo; uncontrollable spinning lasting for days, only able to get out of bed to throw up. The fear of that happening again was a little much for my anxious mind to handle so the bouts kept coming to lesser degrees. Being older at that point I went in for all of the testing, brain MRI's, neuro specialists, EVERYTHING. It was confirmed that I have only 7% balance function in my deaf ear, which is expected, but doesn't make the battle against TMS any better. After being told that I have everything from Meneier's Disease (I don't), to BPPV, they finally gave up trying to figure it out. I have deduced, from my own Google Degree in Fear Creating Research ;) that I have PPPD/CSD/PPV. At least some kind of combination of those.

    You are absolutely correct that Sarno focuses on the back, and pain in general. However his views expanded as his career went on. TMS can be any distraction that your brain finds that works. Mine has found a laundry list over my lifetime! Do yourself a favor. If you haven't already read The Great Pain Deception by Steve Ozanich, make it your next read. His story and subsequent recovery from levels of TMS that even I can't imagine is life changing. The information is far more encompassing than just back pain.

    Hope this helps. Feel free to reach out for support any time!
  9. Amina.84

    Amina.84 Peer Supporter

    Hi. I have the same problem with PPPD. Do you see improvement of your PPPD with the TMS work? Thanks you
  10. bluesboy63

    bluesboy63 Well known member

    I have seen a big improvement of symptoms since coming across the PPPD information then tying it to TMS. Dizziness will almost always accompany stress at higher levels. I'm not talking about every day stress that we all have to deal with. I'm talking about those spikes in stress which are usually parallel to an emotional response to something.

    Personally, I will always have problems with balance due to my loss of hearing and just plain old getting older. Dizziness takes many forms and shouldn't be simply thrown out there with vertigo. Vertigo is horrible! I've had many bouts with it. What I deal with on a normal day I wouldn't even call "dizziness". Mine is more of a balance and disequilibrium problem. I will always have problems looking up, turning my head in certain directions, adjusting to different room sizes, etc simply because my brain is my balance point now and not my inner ear. Is some of it TMS? Absolutely! It knows that as an easy attack point to me. You just have to pay attention to what is a normal day and what is abnormal and probably attributed to TMS.
  11. Neen

    Neen Newcomer

    How are you now?
    I've been diagnosed with mdds also.
    Had it 11 times over 20 years.
    Only used to come on after long haul but my last 2 bouts have been spontaneous.
    It's a weird floating bobbling rocky feeling and severe brain fog I also get a sore neck and very heavy head with it.
    Just come across tms today so I'm very new to it.
    Tried everything under the sun over the last 20 years to cure it.
  12. Neen

    Neen Newcomer

    How are you now? I have had mdds on and off 20 years and just come across tms today
  13. Balsa11

    Balsa11 Well known member

    I got similar symptoms after I felt a few small earthquakes above ground level. Every now and then I'll think the ground is swaying a little and there's an earthquake, only to realize there's no earthquake, so it's definitely fear.
    Last edited: Jul 27, 2021
  14. MWsunin12

    MWsunin12 Beloved Grand Eagle

    Using the Sarno TMS idea, carried forward by Steven Ozanich and others, that every ailment begins with a psychological cause has helped me tremendously when I feel the MDDS feeling. If I can stay present and not get anxiety about it, it passes much quicker.
    We all have our weak spot, where stress shows its face most.
    I know, for myself, that MDDS is mostly psychological.
    The thing that helped me is to stop checking in on myself, to see how I feel, and just jump into something that occupies my attention.
    Just decide to let it go away.
    Tell yourself, "I'm safe. This sensation is caused by my emotions and stress, so I will let it go by instead of becoming something I have to get over. " Put your hand over your heart. breath in for the count of 4 and out for the count of 7 or 8. Do that 4 or 5 times.

    You will be fine.
    Balsa11 and Neen like this.
  15. Neen

    Neen Newcomer

    GREAT to hear as i am so over this struggle and spending 10s of thousands on every therapist out there all of who say they can cure the bobbling brain fog! How long did you have episodes of it before finding this therapy? Did you read many books on it? If so can I ask exact ones please and i will buy them, or did you go to a therapist who specializes in this work?
    Balsa11 likes this.

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