Intro / vent post

New here, let me introduce myself 🤝
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Hello all
I have been dealing with 24/7 rocking / swaying / bobbing, head pressure, underwater dreamlike vision along with many many many other constant visual issues literally you name it I’ve got it, lightheadedness, brain fog, DPDR, trampoline walking, tinnitus, anxiety and obsessive looping thoughts, sleep issues etc etc and many more and occasional actual room lurching spins since I had lasik surgery in June of 2025

history: migraine aura without headache a handful of times in the last 6 years, and a 12 month bout of dizziness when I was 18 that sucked but was nowhere near this level of suffering

what I’ve done: joined an online dizziness recovery programme, two therapists, two psychologists, one psychiatrist, 5 physios, had my hearing tested, vision tested many times, vision therapy, tried both SSRI’s and SNRIs which I couldn’t handle for even a day with horrid side effects and a flare up of the dizzy that would have me hanging onto walls, pizotifen, valdoxan and propranolol which did nothing.

diagnosed with VM ultimately by a neurologist on the basis that I have the head pressure / tight hat feeling and that half my face is numb to touch which he states could only be a migraine

I’ve had no improvement in all this time, lost my job, moved in with my parents and am basically at hopelessness.

I’m so so confused between an online dizziness recovery/coaching approach that emphasises neutrality towards symptoms and says medication and diet changes aren’t necessary, and the medical world that says I won’t recover without meds. I’ve been somatic tracking and doing parts work therapy and trying so hard to be neutral but I simply can’t be I’m so scared of the symptoms.

I’ve been given amitriptyline to try but I’m so terrified of the awful time I had even taking minuscule amounts of SSRI/SNRIs and also terrified if I take meds I’m masking the symptoms not fixing the cause. I’ve also been prescribed sodium valproate but that just sounds horrendous and I can’t find any evidence anecdotal or otherwise that it helps for chronic dizziness. I’ve also been recommended to try sessions of neuro and biofeedback. I’ve spent 10s of thousands of dollars and have no improvement and feel so unsupported by the medical world that doesn’t really understand. Sorry to be so miserable but this is my reality. Is there any hope?

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Hello and a very warm welcome to the forum! Everyone here is really friendly and eager to help, so you’re in good hands. Feel free to share your story and ask questions—this community truly understands what you’re going through.

If you haven’t already, I highly recommend reading the Welcome Topic here: Welcome to mvertigo! and the posting guidelines here: Please read this before posting. They’re full of helpful info to get you started and help you feel more at home.

Remember, you’re not alone in this, and many of us have found support and understanding here. Hang in there—you’ve got this!

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India - I’m so sorry you’re suffering and haven’t found help despite your extensive efforts. You’re in good company here – many of us have had similar experiences. Personally, I went for decades as my symptoms gradually worsened but received either no diagnosis or misdiagnosis as I tried to cope. Finally, like you, things went totally out of control and I became essentially disabled. Eventually I found an excellent doctor (a neurotologist) who properly diagnosed me and I slowly began to get my life back. This, my friend, is what you need.

I will be honest with you that most of us with severe symptoms do not find stability without medication. SSRI/SNRI’s are often prescribed and are often helpful, but not for everyone and not for you. But there are other options. For me the drug that worked was topiramate but it’s certainly not for everyone, and I also take an SSNI plus rescue meds. Unfortunately it’s a trial-and-error situation, and you often have to put up with side effects to find out what works.

Vestibular therapy is another modality that helps many VM sufferers, including me. It’s not easy or pleasant but it can make a huge difference. I also saw a neuro-optometrist who prescribed special lenses, and had vision therapy.

In addition to meds and therapy, diet and lifestyle changes tend to be important – they have been for me. There are several good books that speak to these if you haven’t already discovered them. Heal Your Headache by Dr. David Buchholz, and Victory Over Vestibular Migraine by Dr. Shin Beh are both excellent. The Dizzy Cook also has a website and other resources worth visiting.

Finally, if you haven’t already discovered VEDA https://vestibular.org I highly recommend you check out their website. They are a non-profit advocacy organization for people with vestibular disorders. They support research and education, and offer direct support for people like us who need help. They have a list of vetted medical providers and accurate medical information on their site that might help you. Plus they take phone calls. They are a great organization.

The critical component for you now is to find the right physician and be open to trying different options. This is a complex neurological condition (“difficult to diagnose, difficult to treat”). Please stay in touch and share your journey – it’s not over. Don’t give up, my friend.

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Like sfnative said we’ve all felt a sense of hopelessness each to different degrees. I remember when I first started Nortriptyline and the side effects after a week were feeling intense. At one point one of the many side effects I had made me so bloated I looked pregnant. Once things adjusted and my body acclimated, they all for the most part went away. Every medication is different for each person even reactions. I found that I wasn’t getting a full benefit from medications until 2-3 months in. Sometimes the fear of side effects when we read them also play a part in us finding them or making them a reality. I try not to read the labels and just ask the doctor the 3 most common because half the time they’ll list like 50 side effects because one person in a trial had them. It’s like taking antidepressants and the label says may cause suicidal thoughts… Aren’t you…supposed to like…stop those?!:sweat_smile: Medication is typically an effective route so don’t write it off just yet, but also be sure to give it the fullest try as long as nothing life threatening is happening.

Changes to life also can help dietary, activity, etc. it’s a process, a crappy one, but a process none the less.

I’m more emotional support than science like with vertigo and adjacent symptoms, these days. I’ve done a few video calls with people who had similar unique issues to my own with the world looking tilted and feeling it 24/7, and the thing I always recommend to any recovery is a good mindset. I know it’s not just a light switch one can turn on, but working on the mental aspect is key to fixing the physical aspect. It takes time and for me it took a lot of crying to get me to that point of trying to take back my life. You will get there. I know sometimes it feels like there’s a clock especially when you move back with your parents when this happens (I’ve been there). Ignore the imaginary clock, don’t look at it, look at a mirror. The person you were before and the person you will be after getting through this or even managing it still exists and will exist.

Everyone has different opinions on what works and what doesn’t and unfortunately for issues like this that we all suffer from here there is no guaranteed guide. We’re all just pioneers in the wild west of vertigo hoping to not get dysentery​:sweat_smile: the process requires us to leave no stone unturned. You will find an answer in time or at least a better understanding to the question that can help you get through life. I’m not fully cured, but I know enough about it now and have made leaps in my recovery that today I can keep the dream of a future and a life for tomorrow even when yesterday felt like I was meeting the end. You are not alone, but more importantly you are not done yet. We’re all in this!

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India, welcome to our little dizzy community. I’m sorry you’ve lost your job over this. I guess that means healthcare insurance as well? I was lucky in those respects. My employer had an incredible attitude toward my problem and let me take whatever time I needed when I needed. My guess is he witnessed enough of my Weeble imitations to take pity on me.

At any rate, this disease/syndrome/malady held off and didn’t hit me until I had entered my “golden years” I was in my late 60’s when I could no longer hide it. I finally retired when I was 70 because I had already fallen once at work and very narrowly missed falling through a window.

I hope they get you on the right mix of meds soon, and then maybe you can get back on track.

We’ll be watching for your updates along the way.

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Thank you for taking the time to respond and give me some hope and helpful tips. I have started taking the amitriptyline and have also started the dizzy cook migraine diet. I’m also in visual therapy and going to be getting lenses to try as well. I find it hard coming to grips with the diagnosis as I don’t have any headaches! How are you going in your recovery journey? Thank you for the encouragement, it helps so much to not feel alone

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Thank you for the kind words and encouragement. That’s good to know that meds can take a while to kick in, I’ve read so many “I took it and the next day I was healed” stories that add to that overarching feeling of hopelessness. I’m starting the diet at the moment too and hope that helps, although part of me kinda hopes it doesn’t coz I’m already missing chocolate!

I agree with you that mindset is important and I think I really do buy into that part of the community I’m part of, that reducing fear and resistance to the symptoms and getting back to life is the key but I’m sooo scared all day every day and when I’m not scared I feel like I’m drowning in grief for the life I had / should be having right now. If you have any tips on mindset I’d greatly appreciate them. Thank you again friend!

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Good to hear you’re feeling strong enough to try again. It takes courage to keep going. Just keep reminding yourself that if this med doesn’t help there are a dozen others to try so don’t despair. I found lenses with prisms, along with vision therapy, helpful so maybe you will too. Give the diet a good try too – it helps many people. Honestly, I haven’t found any food triggers other than alcohol, but I only found that out by trying the elimination diet. Besides meds, the main thing that keeps me stable is lifestyle management. I try to go to bed and get up at the same time every day, eat three meals a day at approximately the same time (NEVER skip a meal) and avoid loud/crowded/stressful situations as much as I can. It’s when life goes awry that I often have a VM setback, but now I know what to do (rest, medicate) to get back on my feet.

Like most people with chronic health conditions, coming to accept VM as part of our lives is the biggest challenge, but it’s really the only way forward to lead a normal life again. As you find what works for you, VM will become a smaller and smaller part of your life. Explore, be brave, and come here to seek support. You’re on your way!

FYI, I don’t have headaches either. I often experience head pressure but no pain. And just as often my symptoms are dizziness, confusion, instability, etc. – i’s not unusual with VM.

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Find something that feels normal when you do it. For me it was crosswords. I started with that and kept working my way up. If I can feel okay while doing it eventually a little bit of that normalcy infects the mind in a positive way and transfers to other activities. Granted if that doesn’t work don’t fret everyone has their own process. Comedy helps a lot too. I’ve developed a bit of dark humor too, but no one has complained just yet.

I wasn’t very religious but prayer helped a bit. Personally I don’t buy into the main big religions like Catholic, Christianity, Muslim, etc. but I find God is unique to each person and that helped a bit.

Things aren’t cut and dry unfortunately, but this place exists for when we need a reminder we’re not alone. While it sucks other people have to deal with this it is nice to know I’m not crazy and alone. We’re all here when you need it.:heart:

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Yes, good one! Driving a car was that for me.

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