Hello, my name is Amy, age 48, currently living in Phoenix, AZ. I have been struggling with dizziness/vertigo for the past 10+ years. It started with mild, intermittent symptoms that were few and far between, and has worsened over the past 3 years with this last year being the worst. Most of what I experience is often feeling like I just got off a boat, feeling âfloatyâ, inner sense of swaying, and associated nausea, 5-6 days out of the week(used to be a few days out of the month for a few years up until this past year). In April 2024, I had a horrible episode of vertigo where I was spinning, nauseous, and unable to walk for 4-5 days, thus stayed in bed the whole time and went to the ER, worried I had a stroke or something major, only to be diagnosed with BPPV. I always had dizziness before that, but I feel like itâs been so much worse since then. I had been diagnosed with BPPV in 2022 as well. Went through vestibular therapy for 3 months with no changes. Sought out vision therapy in June 2024 and did for 3 months, again no changes. Then in October 2024, sought second opinion(they diagnosed me with right inner ear canal âweaknessâ) did another round of VRT through a vertigo specialist for 14 weeksâno significant improvement, though I Did feel maybe my symptoms decreased in duration when they came on. Most of what triggers my dizziness is being on screens/scrolling,reading books, certain motions(being a passenger in a car, on boats/planes, bending over, sometimes even walking my dog). When I get the symptoms they last anywhere between 10-15 minutes to hours. I recently saw a neurotologist last week who diagnosed me with vestibular migraines. I was reading Victory over Vestibular Migraines and am confused because from what I read in the book, it says to qualify for the diagnosis, you will have either headaches or auraâs(neither of which I identify having, other than occasionally what feels like tension in my head when my symptoms are bad). Is it possible to have VM without the aura/headaches? I was wondering if I have PPPD but I donât have the symptoms constantlyâoccasionally there is a day or two I feel fine.
All that to say, I feel defeated, especially after having tried so many different treatments with no real progress. I just started reading the book I mentioned before though again Iâm not for sure I have VM after what I read in there.
thank you for readingâŚlooking forward to learning from you all.
Welcome to the forum, @amyb333! 
Weâre so glad youâve joined us here at mvertigo.org, where everyone is friendly and eager to help! Itâs a supportive community filled with people who understand what youâre going through.
If you havenât already, I highly encourage you to check out the Welcome Topic here and the Posting Guidelines here. Theyâll give you a great start on navigating the forum and connecting with others who share similar experiences.
Feel free to share more about your journey, and donât hesitate to reach out if you have questions or need support! Youâre not alone in this. 
Hi dear Iâm sorry to hear about all this! Your story sounds similar to mine. Including same name and similar age, Iâm almost 43. 
Have been dealing with it about 4 years. Diagnosed with vestibular migraine and pppd. I too have Victory over vestibular migraine. And Dr Beh is actually my neurologist. (He has me on amitriptyline, gabapentin, which have kind of stabilized me somewhat but Iâm still not fully functional.)
Same thing I had 4 days of bad dizziness and went to the emergency room. This was my first experience with the crazy dizziness. Ran all sorts of tests and MRIs and said all I had was vertigo.
Iâve been on all sorts of medication, the only one that really made a significant difference was verapamil. Which worked for about 10 months like magic and then stopped working despite increasing the dose.
At any rate I wanted to ask you a few questions:
Do you notice your symptoms are worse when your period starts? When you are bleeding you are lowering your iron levels.
Have you have had a full iron panel done with ferritin?
I have been trying to go over and over everything in my head. Trying to figure out how to solve this ridiculous dizziness. That is ruining my life. And I have disability pending. Like what is the root cause of everything? I donât want to keep treating the symptoms with a million synthetic drugs⌠My friend brought my attention to iron levels. Which are not normally checked by standard lab work. I believe hemoglobin is in the standard testing, but not the iron panel you have to ask for that separately.
My ferritin is only at a level 69 right now, with some iron supplementation, but when I went to the emergency room it was around 50. I only know this because I happen to have it tested around the same month I went to the hospital. (Note, they did not test a full iron panel at the emergency room.) These levels are not considered iron deficient or anemic, because the threshold they care about âat the momentâ is 15. But so many other studies show that women can have a lot of symptoms at 100 or less of ferritin.
All that to say, I have been supplementing with some iron and also beef liver supplements. And I have started seeing a noticeable difference in my energy, decrease in dizziness, and better vision.
Trying not to get my hopes up, but I feel like I have stumbled onto something. Just thought I would mention in case you wanted to look into it. Best wishes I feel your pain a million percent 
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Itâs common with VM to have atypical migraine symptoms. I donât have very painful headaches, more like pressure headaches and I donât have well-defined auras. Like you, my problem is vertigo and dizziness. Please do more research and youâll find your experience is shared by many VM sufferers. Welcome to this website. Youâre in good company here.
Welcome Amy, sorry to see you here, but glad you found us. We arenât a very big group, but we are very self supporting. I think you will find some encouragement here.
Vestibular Migraines defy diagnosis. The fact youâve received one is a huge victory. I went five years from one doctor to the next, sometimes giving up, then starting over again, looking for a diagnosis. Every doctor I saw had no idea.
Then I finally saw a ENT on the recommendation of my new neurologist. The ENT diagnosed Vestibular Migraines. My symptoms were frequent dizziness, sometimes with Vertigo, sometimes not. Almost never aura and almost never no actual headache. When she diagnosed me with VM, I told her that couldnât possibly be right, I hardly ever had a headache. She explained that migraines donât always have headaches, that the migraine with a headache is a different type of migraine.
Now that I had a diagnosis I thought the battle was almost over. I was far from right. Knowing what you have and knowing how to treat it is the end of a very long journey. Iâve tried several different drugs, exercises, diets, physical therapies. Some worked until they didnât, then the search started over.
Im 73 and started this journey when I was about 60. Truth be known, Iâve been on this road all my life, the intensity was just much less.
Anyway, fill out the form that Dizzybot referred you to so folks can see where youâve been and what youâve done. Then they can give you their advice/suggestions. Remember that most of us are not doctors, and the advice you receive should be carefully weighed before deciding to use it. I personally try not to give advice, only my experience.
Good luck and Godspeed.
Hi Amy,
Sorry to hear about your suffering. Youâre definitely not alone. What you described as your âfloatyâ feeling is pretty much how I feel when I get an attack. Currently have one as I type.
Iâve been diagnosed with vestibular migraine and Iâll tell you what, you absolutely can have it without the pain and aura. I never get aura. I do get pain sometimes and when I do, it lasts for weeks until I get Depakote to break the pain cycle.
Anyway, I also tend to get facial numbness or some kind of numbness somewhere in my body when the vestibular portion kicks in. It feels like the floor is moving beneath me when Iâm standing still. Traveling by plane triggers that, elevators do too, and even weather changes can trigger me.
I try to hydrate a lot more, rest a lot, ginger chews, ginger tea, and easy foods to eat if I get nauseous.
I take amitriptyline nightly. It usually helps, but those triggers you canât help will do you in.
I hope you find some relief soon!
Hi Amy, thank you so much for your response. Iâm sorry to hear youâve had limited success with your medications. I have never considered getting my iron levels tested and honestly havenât paid attention to if my symptoms are worse around my cycle. That would probably be a good thing to do! I actually am scheduled for an annual physical next month so I will ask my dr to run the iron panel. Thatâs great to hear youâve noticed an improvement since you started the iron supplements. Thank you again for sharing this ideaâŚalways good to rule things out!
Thank you so much to all of you that responded with your experience. Itâs validating to hear that some of you havenât necessarily had the headaches/aura that goes along with VM.
Your kind words and support mean a lot as well.
Hi Amyb333, With a few different symptoms, I believe I am going through nearly exactly what you are going through. So many of our experiences on this Forum are similar in nature which is why I find this so helpful and reassuring. I learn alot from everyone here. Two years ago my symptoms began and I was misdiagnosed by my primary care doctor with mineares, then with BPPV which led to many months of the wrong type of physical therapy. Last November of 2004, I started having âDrop Attacksâ - (I did not suffer any injuries, but I did need to use a walker a bit to get around). The good news is that it led me to a new doctor, a Neurologist who gave me a correct diagnosis of Ventricular Migraines (fortunately I do not have the migraines). I was not aware that there are medications that exist for these issues from my previous physician, but there are actually a number of medications, and my Neurologist put me on Topiramate. Many people on our Forum are taking this I now realize. Also, my Chiropractor suggested that I let him try a treatment approach, and I am seeing great success with this, and so much so that I expect to be playing Pickleball again very soon this Spring!! ( I guess he is working on some nerves in my neck or the C3 and C4?)
So, the swaying is subsiding, my walking is getting stronger and I donât look like Iâm drunk 
, Hope has returned! Donât give up. Please feel free to reach out if you have any questions because I left out a lot of details.
HI Karen, how are feeling now a year later? What type of chiropractic treatment were you trying?
Hi Amy, thanks for asking. It has been a long year as you can imagine with some embarrassing falls, but gradually I am to the point where I am walking fairly normally, not afraid of falling, feeling confident. I expect it to keep getting better with the help of my Chiro. He focuses on my neck, the very top vertebrae where the nerve bundle goes down to to your spine (I guess). I can explain in more detail when I get to my home computer tomorrow. I feel good.
Hi Amy,
Just a few more details about my progress âŚ.. My Chiropractor is adjusting my C1 vertebra on a weekly basis for about a year now, and progress is very slow, with almost imperceptible change, but I hung in there because the Chirpractor seemed convinced this was the right thing to do. And, here I am walking and playing pickleball. Now, I still have imbalance issues, cannot stand on one leg really, have trouble with steps, but I am functioning soooooo much better than last year at this time. Last year I had to use a walker much of the time at home, like in the shower, and around the house, or all I could do was shuffle from one piece of furniture to another, usually bumping into somethingâŚ.many bruises. Not sure if you can relate to that, but I hung in there. I am also very faithful with the Topamax. So, I attribute my progress to both the medication and the Chriro.
So, from my reading, if I understand my condition correctly, Vestibular Migrain, when my brain sends a signal to my body it must pass through the ear (vestibular system/balance center) which is damaged in my case. So the message is scrambled as it travels down my nerve bundles through the spine. Somehow the correction that the Chiropractor is making to my neck is impacting the nerve message as it travels to the rest of my body which impacts my balance.
This âtop-downâ scrambling is described better on this website VEDA at https://vestibular.org/
Therefore, typical Physical Therapy to improve balance does not help much with VM because the feet are not the problem. The feet are receiving a scrambled message from the brain, so the fix has to start farther up, not at the bottom. Trying to balance on one leg is not going to address the issue. I highly recommend the VEDA website. Let me know if I can answer any more questions. I learn somethin new everyday. I will be thinking about you. Take good care, Karen
Hi Amy,
This is my third email, - I hope you got my other two. The the thing that has helped me THE MOST, IS READING THIS WEB SITE. 
@Karen_L, your Posts are published and Iâm sure @amy_boyd will read them soon 
Delighted you are finding the website helpful
Hi Karen, Really great to hear you are so active! Sounds like a great improvement and system you have going. Good to hear topomax is successfull alsoâŚok so C1, I will ask my new chiro about that. She is doing laser therapy on me for sinus congestion/ head pressure that plagues me in additon to dizziness- seems to be working some, as I have less intense symptoms. I dont have falls, but at times when it was bad, used the portable shower seat as hea/humidity always makes it worse..I feel at times im going to fall, but i never do, its so bizarre.
What you are saying about the top down makes sense. Yes I have done some pt, but doesnt solve the main issue. Thank you for the VEDA link, will check it out!! Wishing you continued improvement! Thanks for the response!