Intro story, and question about explaining your symptoms

New here, let me introduce myself 🤝
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Hi everyone,

New here! Hope you’ll indulge me a quick rant.

I’m six weeks back into the world of 24/7 being dizzy (and disoriented, sensation of movement, difficulty focusing, feeling of being pulled down, tinnitus, etc., etc.) and I’m pretty devastated about it.

This all started in 2007 when I was 23 with a sudden onset of vertigo which quickly settled into constant dizziness. I was a year and a half before I felt fully back to normal, and got very little help from the health system – lots of shrugged shoulders, a “probably” diagnosis of vestibular neuritis, and assurance it would go away soon.

I had multiple relapses over the next 8 years, varying in duration and severity (always months on end though), but got pretty good at managing them eventually. My 2015 relapse was months but I barely missed a day of work and pushed through to live my life. I don’t know if the symptoms ever fully went away. I think I got used to a baseline light dizziness, which would get a bit worse if I was sick or triggered by environmental stuff. But really I was operating mostly as normal for about 10 years until BAM, it’s back, and it’s as bad as it’s been since the first time.

Lots of theories on why it has come back, including a physio who suspects VM, and some concurrent symptoms in gut and head I’m convinced are related. But I’ll save that for a different thread.

What I wanted to raise here is how frustrating this illness can be because nobody understands how disabling and frankly unbearable the symptoms are, especially when they’re 24/7. I try to explain but people just listen and think “oh being dizzy that sounds annoying” and wonder why I don’t feel comfortable going out for lunch. I even find it hard to understand myself why I find these symptoms so unbearable. But it really is horrible when even sitting down you feel constant motion and disorientation. Does anyone know what I mean?

Anyway sorry to introduce myself with so much negativity. The past couple days have been bad ones after a few slightly better, more hopeful ones. I know more good days are ahead, and I wish all of you clear, steady heads!

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Hello @DizzyDan! Welcome to the forum! You’re in a place filled with friendly, understanding folks who are eager to help and share their experiences. You’re not alone in feeling that this dizziness is unbearable—many of us know exactly what that sensation of constant motion and disorientation feels like, and it can be truly exhausting.

I highly recommend you read the Welcome Topic if you haven’t yet. It offers valuable guidance and a warm introduction to the community: Welcome to mvertigo!. Also, please check out the posting guidelines here: Please read this before posting to help you get the most out of your experience here.

Everyone here is really supportive, and you’ll find lots of people who understand exactly what you’re going through. You’re in good hands—well, maybe not hands, but definitely good company!

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Yes sir, I have been very frustrated with not only this condition but with fiends and family lately. So, I have decide to make a small packet of reading materials for those closest to me, and those friends I don’t see often ( who say stupid things, like, “ I forgot you have that,” or “that hasn’t gone away yet?” Or “ why are you walking like that?) My packet will include: 1) how I think I [I may have just run out of space - yikes]

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Hi @Karen_L, that’s a wonderful idea! Creating a packet of reading materials can really help your friends and family understand what you’re going through and foster more empathy and support. Here are some suggestions for what to include in your packet:

  1. Understanding Vestibular Disorders and MAV/VM

    • An overview of what vestibular disorders are, including symptoms like dizziness, disorientation, and balance issues.
    • Explanation of MAV/VM and how it differs from general dizziness or vertigo.

  2. The Reality of 24/7 Dizziness

    • Personal accounts or quotes from others with similar conditions to illustrate how disabling and exhausting it can be.
    • Clarification that symptoms are not just “annoying” but can be overwhelming and persistent.

  3. Common Misconceptions and How to Support

    • Addressing typical misunderstandings, like “it’s just anxiety” or “it’s not that bad,” with gentle explanations.
    • Tips on what friends and family can do to help, such as avoiding triggers, being patient, and offering understanding rather than judgment.

  4. Your Personal Experience and Needs

    • A brief note about your specific symptoms, how they affect your daily life, and what kind of support you appreciate.
    • Any accommodations that help you, like quiet spaces, reduced sensory input, or patience during flare-ups.

  5. Resources and Further Reading

    • Links to reputable websites, articles, or support groups for vestibular disorders.
    • Contact info for healthcare providers or specialists if they want to learn more.

Would you like me to help you draft some specific text or summaries for these sections?

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Hey Dan, really sorry to hear this! I know exactly how it feels and it’s really horrible. I don’t wish it on anyone. I say all the time I would cut off a leg if I could get rid of my dizziness. Because to be able to go back to my job I don’t need both legs. I just need a clear head and a set of hands to type…

So I have seen lots of specialists, including lots of consults with Dr. Beh himself out of Texas. I played Russian roulette for a long time and nothing ever helped me fully recover. He got me a little bit better, somewhat stable. But I still haven’t been able to work in years. But the crazy thing is these doctors they keep adding meds onto meds and so your body becomes like this giant science experiment. I decided I was sick of them all the side effects and just knew it wasn’t right for my body to be on so many different things at once. So I slowly weaned off them this past year And I’m down to only a few which are not related to dizziness.

At any rate this past year, a friend has had me pay more attention to my blood work and also what vitamins and minerals I am taking. You would not believe what a difference this has made… Way more than any drugs. It never occurred to me that my body was missing out on basic nutrients. But I’ve always had terrible digestion so it makes sense.

For example I realized my ferritin was low, which most doctors don’t pay attention to. This is basically your iron reserves or storage, and if it’s under 125, then can contribute to dizziness, headaches, and all sorts of things. You have to run a full iron panel to get this, which is not part of normal annual lab work. Like none of these experts have run in depth Labs!!! so I ordered them myself if I need to.

So I’ve been increasing food, such as beets spinach as well as an iron supplement, and the biggest thing has been a BEEF LIVER supplement. Ancestral Supplements is a great company. This is full of iron and B12.. Decreased brain fog and dizziness and increased energy. At one point I was in bed seven hours a day and after a few weeks, I was getting through the day without laying down.!!

Second, Increased electrolytes every day!! I use Buoy drops, but there are lots of good ones.

The third thing that has made the biggest difference is I started going to IV lounges. Not sure if you have those near you. They are administered by a nurse and you hang out for an hour and hydrate your body. They basically give you an IV with saline and whatever vitamins you choose. So bypasses your stomach and goes straight to your bloodstream. This past week, I couldn’t stay awake for more than a few hours, and was starting to feel dizzy. I went in for an IV and by the next day I was feeling amazing and did a ton of things.

Anyways, just throwing some ideas out there for you. My next step is a naturopathic doctor to fine-tune things more. Because I need to get my life back!!! They tend to look at root causes and how your system works as a whole as opposed to your average Doctor, who is just prescribing chemicals for symptoms.

Have you had recent lab work?

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That’s a really interesting idea, Karen. Thanks for sharing! Let me know how it goes.

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Thanks Amy for sharing some of your experiences and tips!

I’m know the feeling. I’ve thought so many times of the things I’d trade to never have to deal with this dizziness (etc.) ever again. Sadly no one’s offering that bargain haha.

I’m glad you weaned off all those meds. I also don’t think adding and adding and adding helps anything. I’ve had very limited help with medications in the past, and like you I want to focus on my overall health. My stomach has been an absolute nightmare since this relapse of dizziness (I have IBS at the best of times), and I have other strange nervous system symptoms as well. So I’m hoping to getting to the bottom of those other symptoms will help the dizziness as well.

I’m taking lots of supplements, have just visited a very thorough naturopathic doctor, and I’m back on my vestibular rehab exercises from a vestibular physiotherapist.

I did have bloodwork and I was B12 deficient so I’ve been supplementing that. Hoping that makes a bit of difference as well.

It’s all so much to manage, so I’m also just hoping for a bit of luck. My previous bouts with dizziness got slowly better over the course of months. Hoping to see some progress soon.

Wish you good health!

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Welcome Dan, we look forward to seeing more posts from you.

I love your handle. As a lad, I listened to Dizzy Dean every Saturday afternoon while he and Peewee Reese called the MLB Game of the week. Your handle reminds me of Dizzy Dean.

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As a fan of baseball history, I definitely thought of Dizzy Dean when I made my handle. And as a Canadian living in Toronto, I’m pretty excited about the World Series right now.

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I totally get your frustration - I was finally diagnosed after 7 months of symptoms but I had to be very assertive with providers. Read: “Heal Your Headache - The 1-2-3 Program” by Johns Hopkins Neurologist Dr. David Buchholz. Diet will absolutely help your dizziness (which is likely Vestibular Migraine and/or PPPD (Persistent Postural-Perceptual Dizziness). Read my friend’s book: :Vertigo Untangled” by Bobbi Coffin. A low histamine and NO tyramine diet (also called a Migraine Friendly Diet) is critical. So is exercise - just walking regularly will help you. For computer screen work and sunny days, invest in FL-41 lenses (indoor and outdoor lenses). Keep persisting to get a definitive Dx - a Vestibular Neurologist or Migraine Specialist will help you. And if you need medication, these specialists are the ones who can prescribe the newest - which you should only use once per month - no quick fixes but you can manage your condition by getting your VM threshold down and keeping it there. Good Luck!

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Thanks Amanda! These are really helpful recommendations. I suspect a PPPD diagnosis is coming… eventually. I am trying to exercise and treat my body right, and remember how to push through symptoms. Each of my major dizziness episodes involved learning how to overcome/push through symptoms, but it just seems extra hard this time!

How are you feeling these days?

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I have had several dizzy free days for the past week - surprising given I have a very stressful conference coming up that I’m co-chairing and will be on stage to present as well! Maybe the adrenaline is keeping me from being dizzy. We have a long drive ahead of us tomorrow (10+ hours) which usually sets me back - but so does flying and here in the states flying is more stressful than driving. My husband has to do most of the driving these days when I feel a dizzy spell coming on - I used to do 95% of the driving. My neurologist says to keep my eyes on the road as if I were the driver, not scroll thru my phone, and I’ll be wearing my FL-41 sunglasses! Wish me luck and hope you feel better too.

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Amanda, consider starting a diary in Personal Diaries :open_book: :slight_smile:

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Thanks! I’m having a bad couple days but I know there are better days ahead. Glad to hear you had some dizzy free days!