1. Alan has completed the new Pain Recovery Program. To read or share it, use this updated link: https://www.tmswiki.org/forum/painrecovery/
    Dismiss Notice

Just feel hopeless... and find it difficult to believe in TMS sometimes

Discussion in 'Structured Educational Program' started by sacolucci23, Mar 28, 2018.

  1. sacolucci23

    sacolucci23 Peer Supporter

    My issues started 10 months ago. Postpartum, working from home full-time, little sleep & high stress. I started getting dizzy spells at work and as the months went on, began to feel increasingly unsteady on my feet. One day, I had an intense dizzy spell while reaching for my wallet in my bag on the passenger seat. I went to the hospital and they told me I had BPPV, an inner ear condition where crystals float around in the part of the inner ear that detects motion. I was told it was easily treatable by doing something called the Epley Maneuver. I went home did the Maneuver for 3 days and the spinning sensation while lying back went away. I was still left with a vague sense of dizziness and imbalance. I was completely terrified and traumatized by having vertigo. Having a very high-anxiety personality, I needed to find out the reason I got BPPV. I wouldn't accept that it "just happens." I researched endlessly and at the same time, my symptoms (even without BPPV) persisted.

    Around the same time as I had BPPV, I also developed headaches that felt like they were deep within my left ear. I attributed it to the fact that I was always carrying my baby on my right hip and perhaps, the strain on my neck or back was referring pain to just, what felt like, inside my ear.

    This sort of eased up after the BPPV was treated even though it was in the opposite ear but I was left with ear clicking after high-frequency sounds. If I am speaking loudly or hear dishes clang, for example, my ears click. No one can really explain this phenomenon.

    Now, I get these dizzy episodes where I will be sitting at the computer and all of a sudden I feel very dizzy. It gets worse with motion. If I move, up down, side to side, I get dizzier. It's not a spinning sensation just an uncomfortable dizzy sensation. It usually comes with a lot of anxiety. I am scared it's a focal seizure since this is one test I haven't tested for. I heard focal seizures last 10-20 seconds. This can go on for 10-20 minutes for me and linger throughout the day.

    This whole ordeal has changed my life. Although my testing is normal, I am scared to live. I am scared to go out, vacation, just be alone with my kids. I keep thinking back to when I had BPPV and how disconnected I was with life. I look at pictures of me before and only long to be normal again.

    Sometimes I believe wholeheartedly that it's TMS and I feel a little better. But then, I could just be sitting down doing nothing and I get dizzier. This also seems to happen on the computer or as soon as I sit down at the computer to start my day.

    I've tried to explain my symptoms to specialists (Lord knows I have seen a whole slew of them (4 ENTs, 3 neurologists, 1 neuro-otologist) and they just really don't have an explanation except a migraine variant.

    I've had the following tests:

    MRI - normal
    CT scan brain - normal
    vestibular testing - pretty much normal. It did show some weak imbalance in my right ear but in reality, nothing of major clinical significance.
    Blood tests

    I am waiting to have an EEG to see if there is some seizure activity going on because it does really feel like electrical currents are piercing through my brain when this is happening but then again, I am total awake and conscious and seizuresz usually don't get worse from moving around.

    I am also having an MRA to look at the blood vessels as I am scared it's an unruptured aneurysm, although that also seems unlikely because usually they have no symptoms and when they do, it's not the same as what I am describing.

    I really need some words of encouragement.
  2. iwire

    iwire Peer Supporter

    HI Sacolucci123,
    years ago I had symptoms very much like yours...a strange variation of dizziness--I was absolutely convinced something was medically wrong with me--and like you I became fearful of going out alone, fearful of driving, afraid of doing many things I had previously enjoyed because I worried about having an "episode." I underwent many medical tests, all negative--and in the middle of the work up through a very bizarre chain of events I got connected up with a social worker with expertise in anxiety. As it turned out these were anxiety attacks. I was able to get to the other side of them quickly using a strategy very similar to what you will read if you read Claire Weekes' books or search for her on you tube. The fear of the attacks was keeping them going and making them worse. It was so empowering to find I could learn to "ride out" the episodes---nothing bad would happen and as soon as my brain knew that--they stopped coming. I am now working on applying this same strategy for my TMS symptoms---and in reflection-- I know those anxiety attacks were TMS as well.... Assuming you get a clear bill of health from the MD's--I highly recommend Claire Weekes.....
    Best Wishes---

Share This Page