I am reaching out and sharing my story & health as it’s about time I extend my reach for help and solutions, to be quite frank I am extremely desperate for any type of help so I am praying someone will have some sort of guidance or just anything to potentially help me. I also would like to apologise in advance as this may be a very long post and I know reading lots of text on a screen isn’t always great for everyone.
My name is Joe and I am a 25 year old male from the UK. From age 0-5 I had a perfectly normal good life. I was walking by 8 months old and by age 4 my mother had me in all sorts of athletic curricular programs including gymnastics where I was doing all kinds of rollovers & flips. Everything until this point was either great or normal, the only negative thing to happen to me during this time of life is I had a very traumatic birth and was on life support & incubators, I am not sure of the details but my mother told me I was very very sick and that the Dr’s used forceps on my head to pull me out which is what she thinks caused my issues today. Skip to age 5-6 I am now in Primary School full time public education still perfectly normal and excelling but one day out of nowhere I was running on the playground and I got struck with a bout of dizziness, nothing too intense just a dizzy spell of spinning sensation. I was sent home and it passed but this is where everything then began. Each year I would get these bouts of dizzy spells more and more each year. I could still do most things when I didn’t have the spells but eventually it got worse even more to the point where I’m not having an attack of dizziness but I can still feel it in the background like something is off and that if I did something wrong like turned to quick or went upside down it could make an attack come on. Come to age 15 the dizziness evolves from what started off as just spinning sensation now when an attack comes to now more severe where gravity feels completely sideways or shifted, I feel like I’m falling in the wrong direction, my balance is gone, my heal tilts, I visually see movement that isn’t there, the motions loop, I really wish I could explain it well but it honestly just feels like being put in a washing machine or physics breaking roller coaster. So now when an attack comes I get disabled and panic, unable to move which has started giving me anxiety. But now it evolves again, after an attack comes sometimes it can have a lasting effect where I have been stuck in bed laying down for up to 4 months unable to move at all due to small movements bringing on an attack. More years go by and the same story I get more and more attacks throughout the year and I now live in fear daily with the amount of little background vertigo that is there. Sometimes I have had a solid year where I am almost unaffected but I have had to live carefully in those years no planes no boats no elevators no sleeping on my back no sports or anything that could trigger a possible attack. Fast forward to today I am now 25 years old I suffer from chronic depression & anxiety all due to my vertigo. I have tried to end my life multiple times due to the vertigo being so intense and me realising I can not live like this anymore its torture and completely unbearable. It has prevented me from getting a job, going to university, having children, travelling, getting a driver’s license, missing family & friends events the list is endless. Lately this year I have noticed now I have been getting some tinnitus in my left ear only but it’s very minute and new and doesn’t happen 24/7. This could also be unrelated but since age 20 I started getting tremors in my hands too along with body convulsions when a vertigo attack comes.
I hope I managed to fit every detail about my condition and how it progressed over the years. As for doctors I have had no luck at all most have just tried to brush my aside and give me anxiety medication because they think it’s in my head, some wanted to try MRI scans and other tests but I can’t physically do any of those cause they trigger an attack for me and they refuse to put my under anaesthetics for any scans. No DR has seemed to grasp how intense this is for me even though I am suicidal from it. I tried to explain that if they do anything to trigger an attack I could be bed bound for months after it and have even higher anxiety on top of the severe attack of vertigo. So it’s been really really difficult to do anything with health care. I even tried stem cell treatment in 2020 which was not cheap and it did work. I was 70% myself again and able to do a lot more than usual like going on a plane or playing sports BUT it only seemed to last about 18 months before wearing off or so it seems. Dr’s have given me all sorts of theories too from Meniere’s Disease to Positional Vertigo some even suspected a brain tumour but to be fair I have only tried a handful of medications or treatments as I explained I am terrified of something I try whether it be medication or treatment to trigger an attack.
So now I am completely lost and very close to giving up because I can’t live much longer like this. I have already missed out on so much of my life due to this condition so I am desperate for any help or just something. I don’t even mind not having a cure. I just want to be able to live normally and do all the things I dream and desire in life without any limits from my health. Personally I have no idea what could be the issue. I used to think it was an issue in the inner ear as I have a little bit of difference in hearing in one ear and that’s also the side which the vertigo and world feels and looks tilted too but at this point I have no idea because stuff like Meniere’s Disease to Positional Vertigo doesn’t seem to add up to all my symptoms and how it seems to get worse over time too and evolves in the way the motion and visual things look. I really don’t know. I am booked in with a neurologist next month who apparently specialises in vertigo so lets see but please anyone who has any suggestions or ideas I am willing to pay any amount of money for help. Also I know I mentioned anxiety & suicide but please do not be alarmed I am being cared for and in a safe space as I write this I just had to be upfront about how severe the vertigo is that it leads me to suicidal attempts in the past so people can hopefully understand this isn’t just a spinning room sensation or that when it passes I am okay.
Thank you to anyone who reads this, whether you can help or not. I am just glad this has reached somebody and can maybe even help someone else out there who has the same experience as me to know you are not alone.
I know the feeling. The years of it creeping in, getting more frequent and even changing in its many ways of dizziness, rocking the boat and millions of violent vertigo spins. Oddly you sound a lot like me. In my experience I have a side worse than the other. The right side, its where my hearing has been lost in a typical menieres like manor altought I do not have that. Its where my muscle tension is. Its the side I have had c1-c2 sublaxations and still get them, those cause all sorts of symptoms for me including more vertigo. I finally found my problems stem from genetic predispositions including mthfr, mthfd1 (choline deficiency unless choline intake is at least double of a normal person at 9 eggs a day), mold toxicity, I think I mau even have a mold allergy now, candida overgrowth (in combo with mold) causing leaky gut. I did not figure any of this out until my worst, the dizziness never ended, the vertigo epsidoes lasted 2-4 hours nonstop violent spiinning up to 3 times a day, minimum 1 a day.
Doctors could not figure any of my real causes out. I had to through suffering and life experience. Its worth letting them check what they can, because they may actually be able to help you but remember there are other types of medicine (like functional medicine and naturpathic medicine) which will address other issues that a traditional doctor may have no knowledge of.
I was reluctant to try medicine but one eventually gave me nortriptyline and it helped calm down the epsidoes and pain enough to figure this all out except the mold wasnt figured out until I moved out of it
My story is so terribly long as I have had transient vertigo episodes since 1994! My heart went out to you and I thought perhaps I could share the many diagnoses I have been given (not sure which ones are accurate) but to give you a starting point as many of these will be overlooked by the medical community. I have been diagnosed with vestibular migraines, vestibular neuritis, meniere’s disease, pots, pppd, severe gluten intolerance as a possible cause, hashimoto’s thyroiditis, post concussion syndrome from many head and neck injuries, traumatic brain injury from the same, tmj disorder, acid reflux, and currently being checked for neuro sjogrens. I have been a lab rat for several yrs and have had every test known to man kind, including injections in the head, c-spine, tailbone, to name a few. Many of these are known to cause vertigo, including having a history of cold sores (vestibular neuritis). I have become very knowledgeable unfortunately but thought perhaps you might want to try these avenues and see if any hold true for you. I agree that a functional or integrative specialist can be very helpful as mine did find unusual things (like the gluten-gluten ataxia) that a conventional Dr. would not, though I would caution to go with your gut as this can quickly become a wallet flush if you don’t have a reputable one.
I do also understand the feeling of wanting to end your life, as this condition is invisible to your loved ones, it does bring you to a very dark place, but know in your heart that your friends and family love you, and could not imagine life without you. You have a greater purpose here on this Earth, even if it is to help others with vertigo. I wish you the best and hope you are able to find answers quickly and relief even sooner.
First of all so sorry you’ve had to manage this horrible crap since childhood. It’s understandable how you’d feel like you can’t go on anymore but you can live a decent life with vertigo. I’ll share what’s worked for me and maybe just maybe it could help you too. Nervous system regulation either on your own or with a therapist, watch The Steady Coach on you tube, she also has a free online course. For the nervous system regulation I do cold therapy and breathing exercises and binaural beats are great too. This is all free and can be found on you tube search or online. Also taking creatine mono hydrate has helped me tremendously with fatigue, daily headaches and dizziness. I take 5g 2X a day but you can take up to 30 grams a day. It sounds to me as if your body is stuck in fight or flight mode, once you can train your brain to know it’s safe you will start to feel so much better! It’s taken me 3+ years to get feeling better so don’t plan on a miracle but I am able to get through the day so much easier now. Just remember YOU have to put in the work to get feeling better even though it feels like nothing helps right now. Good luck to you and please at least try these things!
I am blown away at some of the replies I have gotten here I was not expecting this at all!
All of your suggestions, ideas have been written down and I will use this information to make a list of things to either check/test with the Dr to hopefully maybe find something and get treatment. Genuinely so grateful for all of you who responded and shared a little about yourselves too it means so much to me so thank you!
I imagine anyone plagued with this illness is happy to share any info we have with each other on this forum. I consider it a support group for an invisible illness that no one can relate to unless they have experienced it themselves. We are all in this together, and will hopefully continue to improve and put all of our dizzy heads together to try to find what works for each of us.
Life is short, and I know I speak for myself I don’t want to continue to miss out!
That is true its nice to know there are others who are going through the same battle and trying everyday to survive with it and pushing for help with medicines & treatments. Hopefully one day we all can have a strong relief or cure from it.
Hi Joe – its important to recognize also that psychiatric conditions and vertigo/dizziness often run in parallel to eachother in a self-perpetuating feedback loop that becomes difficult to break out of. Its entirely possible that your feelings of helplessness/anxiety over your condition are worsening it or very close to the kernel of whatever is causing this for you.
In addition to trying to get in to a dizziness clinic at a large academic medical institution near you (this will either be staffed by neurotologists, neurologists, or both), I would highly recommend pursuing counseling/talking to a psychiatrist about getting your anxiety/depression under control.
In my experience, people with these conditions are often dismissive of pursuing psychiatric care because they insist that the physical underlying causes of their dizziness are causing their dizziness, not the other way around, but it doesn’t matter. Attacking the problem on both ends of the symptomatology can only help you in the long run.
At one point while I was suffering with this condition, I became convinced that I was going to be dealing with the same level of symptoms for my entire life, and that the only logical way to escape would be to k*ill myself, but I was wrong. These conditions are treatable – you just have to be persistent and not give up hope!
Good luck to you – everyone on this forum is extremely helpful with advice/guidance so never hesitate to reach out. James (@turnitaround ) has done a wonderful job moderating and curating this place to be a helpful community for sufferers.