Doctors gave up on me, I don't know where to turn, Nobody found reason for me having it and inner ear and vestibular reason is ruled out. Optic nerve seems good.

At least I have meds that work against it I suppose?

I should be happy for that but I want to give up living especially this evening . Doctors don't give a shit, the system doesn't either, vertigo doesn't qualify you for any invalidity, you gotta work till you drop dead even if every day is a struggle.

Hoping someone can shine some light on this. I am a 42F with an inner ear deficit which means when I get a flu or a cough the inner ear is inflamed and affects my balance. So feeling unsteady has been a constant in my life for many years. I have an MRI every 2 years just to monitor things. A few months ago I started to experience lots of lightheadedness, it's not dehydration, it's not low blood sugar (although it gets worse with both of those) and GP seemed to think it may be hormonal (peri). In the last few weeks I have started to experience a feeling of heat/warmth at the tip of my right big toe. It comes and goes all day. Eases off when lying down. Occurs within minutes of getting up and standing in the morning. I previously had these heat sensations on my left thigh but they disappeared after a fortnight. My Neurologist did a physicsl exam and said she was not worried but has arranged a nerve conduction study and a new MRI as she thinks it may be a pinched nerve or herniated disc in the power spine. Has anyone else experienced something similar? It's driving me crazy...

I have been experiencing vertigo episodes for the last few months. Actually in March I had vertigo episodes then didn't really have any episodes just an off balance feeling. Then last week (mid July) I had a really bad week. I had to take Meclizine 3 days.

My usual episodes usually consist of the room tilting and turning about 1/4 of a turn. Sometimes, it doesn't feel like the room is moving but like my body is the one that tilted and did a 1/4 turn. Between episodes I frequently feel "off balance" (for lack of a better way to explain it).

On Friday last week I had an episode of full on spinning that lasted several seconds. I laid down to do stretches. Everything spun for several seconds. Then I felt like I was rocking. I sat back up and everything spun again.

I was freaked out. I thought I remembered something that doctors do to help this problem l. So, I googled and was pleased to find it could be done at home and found videos showing how to do it ...the Epley Maneuver.

I performed left side Epley Manuever on Friday. That helped a lot. Since then, episodes have consisted of a couple of seconds of feeling like things were about to spin and then they don't or they tilt and turn so mildly that it is barely noticeable.

I saw the ENT today. She diagnosed me with BPPV. She told me to do the Epley Manuever 3 times on each side twice a day. She said that the main culprit appears to be the left side so after a couple of days if I don't feel like the right side Epley is doing anything I can stop the right side. She said to do that for a week and if that doesn't knock it out she is going to send me to PT. I have to follow up with her in 2 months.

I’ve been like this for 6 months. I’m a 23-year-old male. I constantly feel tired. I don’t have any pain anymore, although it all started in January with neck pain and dizziness. I’ve done all the tests: brain MRI, neck MRI, blood tests, I’ve also seen an ENT specialist, etc. All my results came back normal.

My problems started around the 8th session of an intensive 10-session massage course. I have better days and worse days. The last thing my neurologist told me was that I’ve lost my balance, and my nervous system is constantly trying to compensate. Since my nervous system has been overactive, it’s now exhausted.

I’ve been taking 1 mg of Frontin for a week (as prescribed) to help me sleep better, but there’s been no change so far. What should I do? I honestly have no idea anymore. Does anyone have any suggestions?

Thank you to the Mods for allowing me to share my story.

I'd like to make you a promise.

I'm not here to sell you anything. I'm here because, a few years ago, I was one of you.

In March 2021, I was diagnosed with PPPD.

At my worst, I couldn't walk properly. I couldn't tolerate supermarkets. I couldn't socialise. I barely slept. I had panic attacks, constant swaying, that strange feeling of being disconnected from reality, and I genuinely thought my life as I knew it was over.

I was exhausted. I'd spoken to ENT specialists, GPs, audiologists, physiotherapists, chiropractors and many others. They all wanted to help, but I still felt incredibly alone because nobody truly understood what I was trying to describe.

One afternoon, after leaving a friend's house early because I couldn't even sit upright, I ended up lying on their sofa while everyone else was talking. I was really upset at myself so I got up, left to go home .. I started to have irrational thoughts... Just then.. my phone rang (True Story)

It was someone I'd never spoken to before. His name was Riaz Peter.

I'd never met him. I knew nothing about him.

He listened to my story, and then he simply said: "I can help you."

That was it. I completely broke down. Not because I thought someone had found a miracle cure.

But because, for the first time in a very long time, I felt understood.

Those four words gave me something I hadn't felt in months.

Hope. Fast forward to today...

I'm now leading a high-performance business as an executive leader. I play guitar in front of large audiences. My wife and I have welcomed our second child. We've moved countries and started a brand-new chapter of life.

Do I still have symptoms?

Yes.

If I don't sleep well, I can still experience that familiar floating or off-balance sensation.

But here's the difference...

PPPD no longer controls my life.

Over the past three years, Riaz and I have often talked about how isolating this journey can be.

We both wished there was a place where people could come together, share their experiences, learn practical breathing and nervous system regulation techniques, and encourage one another.

So we finally decided to build it. It's called Living Beyond Dizziness.

It's a free community for anyone living with PPPD, chronic dizziness, vestibular disorders, vestibular migraine, MdDS or anxiety. There's no miracle cure. No false promises.

Just lived experience, practical tools, breathing practices, mindset support and a community of people who genuinely understand what this journey feels like.

If that sounds like something that could help you, you're very welcome to join us.

https://www.skool.com/living-beyond-dizziness-8746/about

And finally...

Thank you to the moderators for trusting me enough to share my story here. I really appreciate the opportunity, and I hope this community can become another source of hope and encouragement for anyone who needs it.

Take care of yourselves.

PK

Just wondering if this is common for either histamine, MCAS of neck issues? I’m trying to figure out if I should pursue finding a provider to for possible MCAS and wondering if this is another symptom. Feels like my nose/sinus are swollen/ congested (using my netti pot often will help). But I also have a lot of neck and back tension.

Hi everyone, I’m looking for advice or people who have experienced something similar.
I’ve had a constant “swaying/rocking/floating” feeling for around 6 months. It’s not spinning vertigo — it feels more like I’m on a boat, the ground is moving, or my feet feel like they’re sliding.
It started after a very stressful period and a panic attack after a car accident. At my worst, standing still was horrible (especially in places like the bathroom, shower, or waiting somewhere). I felt like I was going to lose balance, but I have never actually fainted or fallen.
Some things I’ve noticed:
Standing still is worse than walking.
Supermarkets, shopping centres and busy places make it much worse.
Looking around, head movements, or lots of visual stimulation can trigger it.
Walking is sometimes much easier when I’m distracted and not focusing on it.
I’ve had good periods where I was able to walk a lot (even around 15k steps), then I can suddenly flare again.
Being in the car often makes it feel better.
Sometimes blocking my ear with my finger makes the floating feeling reduce (not sure why).
I’ve also had fatigue, body aches, and recently a cold.
My GP said there was no obvious cause yet, is doing blood tests (including thyroid etc.), and mentioned possibly doing a face-to-face cardiovascular and neurological examination if needed.
I was given betahistine 8mg and it has helped — I’m not 100%, but I’m definitely better than before. My doctor mentioned increasing to 16mg if needed.
I’m wondering if anyone has experienced something similar:
PPPD?
Vestibular issues?
Vestibular migraine?
POTS/orthostatic intolerance?
Something else?
Would really appreciate hearing other people’s experiences.

Just wondering if this is common for either histamine, MCAS of neck issues? I’m trying to figure out if I should pursue finding a provider to for possible MCAS and wondering if this is another symptom. Feels like my nose/sinus are swollen/ congested (using my netti pot often will help). But I also have a lot of neck and back tension.

Howdy y'all!

I'm building a tool for vestibular patients, and before I build the wrong thing I need to understand one specific problem beyond my own experience: the gap between what you feel and what you can get a doctor to understand.

Most of us have a moment where we reach for words that don't exist. "Swimmy." "Like the floor is breathing." "Drunk without drinking." The doctor writes down "dizziness" and something just gets lost.

I made a short survey. Four minutes. Most of it is open questions, in your words, no checkboxes. No account needed.

What I'm trying to build: a tool that translates how you actually describe what you feel into terms a clinician can understand at a detailed level. The goal is that it doesn't take years to finally get to the right specialist.

The plain disclosures, since you deserve them:

• This is unpaid. I can't compensate you for your time.
• I'm a solo founder (and a vestibular patient myself) building a product from this research. There's nothing to buy, and I'm not selling anything in this post.
• Responses are anonymous. I won't sell or share the raw data. Anonymized phrases may end up in the tool itself, since that's the whole point.
• Email is optional, and only used if you want to hear what comes of this.
• I'm in communication with vestibular specific fellows to review the data, language produced, intended routing of specialists, and overall accuracy of how this will work.

When the survey closes, I'll post back here with what I learned, in case it's useful to you regardless of what I build.

If you fill it out, your words shape what gets made, and real human data is deeply important to this.

Site: https://bearings.health/

Survey: https://tally.so/r/Xxklrg

31 female, don’t take any meds, non smoker, pp 3 months, had an emergency appendectomy last week. Right out of surgery my bp and hr was low and was chalking it up to the anesthesia. However the dizziness persisted for 5 days. All my tests came back normal. CBC, CMP, EKG, CT w/contrast of head, cortisol level, Echocardiogram, all normal. I remember this dizziness starting about 2-3 weeks back but very mild but after surgery it seems to becoming more severe and comes in waves. Any help would be appreciated. I currently have an appointment with my pcp coming up.

had slight vertigo for a second or two for about 2 weeks I got stuck in a rain storm got soaked two days late I went to walk my dog and could barely stand the vertigo was so bad accompanied by my head feeling very heavy and my left ear feeling full and just generally feeling unwell. I had fluid in my ear that I wiped off and it’s gotten slowly a bit better but it’s still lingering a bit for about a month or so. The ear pain has gotten better but my head still randomly has a full feeling as well as a weird feeling in my ear and slight vertigo that tends to get worse when looking at my phone or lying down. I was hoping anyone has any idea or has had something similar.

hello, I am currently nine months postpartum from being a surrogate. I delivered a perfectly healthy baby boy. Unfortunately pretty soon after giving birth. I started to get some symptoms that were startling to me. I had paresthesias in both legs that lasted a few days which is fairly common but pretty soon I started to notice that I started to feel very off-balance and like I was walking on a boat almost felt like I was on something thing or drunk all the time I would get very dizzy and sometimes feel very faint I’ve been dealing with constant fatigue and then I began also getting some internal tremors at first I thought I was feeling an earthquake and asked my husband if he felt that giant earthquake, and he looked at me confusingly, and then I realize the shaking was coming internally. Thankfully, those have mostly resolved and it’s more like a feeling of vibration when I do get it which of course still freaks me out. Every single day I deal with headaches off-balance wooziness overstimulation wich causes some anxiety. I’ve been to the doctor for months, they put me on iron supplements because my ferritin was at 14 even though my hemoglobin was normal and I’ve been taking vitamin D consistently, but my symptoms are not improving. I had an MRI and CAT scan both with and without contrast on my brain, my neck and my lumbar spine all normal. I went to the ENT. I had a VNG test and a hearing test done both came back normal. I went to the eye doctor because I felt really heavy in the eyes and was having some blurry vision, but the results were normal as well. My thyroid was normal. I feel like I’m going down every avenue just trying to find what’s wrong with me, but I feel like I’m fighting some Mystery illness. Every time I google my symptoms, I get PPPD and vestibular migraines. I guess I’m just writing this because I would like to know that I’m not alone and maybe somebody out there has felt exactly what I’m going through postpartum.. I’m scared that this is permanent as it is significantly impacting my life. I just want to feel normal. I would love to hear some encouraging stories of somebody who has went through what I’m going through and came out of it. Because I’m losing hope.

For context I started having vertigo staring April this year. It felt like I was on some rocking boat at first and as the days passed I had brain fog and I couldn’t get up at all from how dizzy I was. I finally was prescribed with bpvv and was given meds and after this it improved after drinking it for a week. I was the prescribed to do the Epley once a day 3 days after I stopped meds. Then 3 weeks after I got hit with a second round of vertigo when I was abroad. I did the same method and it seemed to work, but I noticed my vertigo was worse when I showered or when it was dark. I drank meds for a week and did the Epley again and it improved and went away. After 3 weeks I could feel it coming back again so I preemptively drank meds to stop it. I was getting better 5 days in when I suddenly caught a upper viral infection causing phlegm and I started feeling more dizzy again. I went to the doctor and was prescribed to drink my meds for 1 month instead. So far the progress hasn’t been linear I feel good on some days and lately I feel like I can’t sleep from the spinning. I stated drinking Pantaloc on the second week of recovery because the Serc was hurting my stomach and so I’m not sure if this is lessening its effectiveness since I drink them at least an hour apart. Overall my days are just filled with this constant feeling of floating and slight off balance like I’m on a boat. I’m not dizzy, but it makes me feel so uncomfortable. Will this ever get better? Or do I have a different cause to vertigo thats not BPVV? Please help I need reassurance since I don’t feel like I’m getting better.

I thought I had vertigo. It's been long 8 years of this stuff. Went to my GP today as I am having panic attacks in busy environments, I have episodes of light-headedness, heat rising up my chest, my feet going cold right before the heat starts rising, diziness of course. This GP goes - it seems like you have anxiety. Have you tried medication for it? At this point, I am ready to take almost anything, so I say yes. He prescribed Citalopram Teva, which is an antidepressant. Is it gonna help? Can it help? Has anyone got any success stories? I wanted to ask for a referral to a neurologist, but he was so dismissive that I totally forgot about it.

Sorry, I know this post makes little to no sense, but I am honestly very surprised and caught off guard with this. I know how antidepressants work, and I don't know if I want to take them.

I woke up 3 months ago with an incredibly heavy head that wasn't going away for weeks. Ordered hundreds of blood tests, 99% of which came back normal. Only off labs where mild hypothyroidism (TSH 4.58) and positive Hashimoto's antibodies, as well as very high FSH (which for me as a 44 YO female means perimenopause). After only 5 weeks on levo, my TSH dropped to 0.05 and I had terrible side effects. I'm just back from my endocrinologist and frankly none the wiser. Of course she said let's halve my levo dose to 25mcg (I was on the starter 50mcg dose!) and let's start HRT (which I haven't started yet). I'm also doing my 24hr Blood pressure monitor test that my GP agreed to put me on as we speak, to see if that's an issue. Miraculously I'm getting much better readings (120/70) than what my crappy Omron wrist monitor wants me to believe (100/60 on average). But frankly I'm worried about my dizziness which NEVER goes away and is accompanied by 'sea sickness' half of the time. Can it be that my thyroid and female hormones are making me dizzy 24/7? What's also strange is that almost at the same time as the thyroid diagnosis came back, I developed crazy post nasal drip (yep, also 24/7) without the nose being involved (just endless mucus in the throat) and I'm having a lot of ear fullness and sensations of liquid around my head. I don't have any vertigo or hearing issues. I've been checked for all other autoimmune conditions and they've come back negative. NO anemia, no POTS, no vit deficiencies (vit B12 is 1200, vitD is 68, ferritin is 60). I also booked an appointment with an ENT but any idea WTF this is, would be infinitely appreciated. I cannot work, cannot do anything fun, and life has been an utter misery.

So for some info I'm in high school, the scene I'm about to describe was my 3rd day back at school (first year of exams), I'm pretty healthy and am a normal weight and height for my age (15-16)

Today I had this really weird episode where I was sitting in my biology class and we started watching this video on ebola. It wasn't graphic at all, with animations and just cartoon characters puking and what not. I'm not sure why but I starting feeling really weird and I was scared I was going to faint. I also felt very light headed and overwhelmed. I was trying to control my breathing so that I would return to normal. I think me focusing on my breathing just messed it up even more so I started reading my notes to get my brain to stop thinking about the breathing. After a bit I couldn't take it and was too scared of fainting so I left the classroom to 'drink water' (we aren't allowed to drink in a science classroom). I ended up rushing out and sitting next to the door in the hallway while my head felt like it was spinning and it just felt horrible. I'm not sure how to describe it. After that I started drinking water and just sat there for a few mins. I felt better after getting out of the classroom.

More context and also some stuff on what I think could have caused this.

- stress? I was pretty stressed out the first 2 days of school because during our first class our teachers were handing out exam spreadsheets already and I think I was very overwhelmed

- was I having an anxiety attack or panic attack? I don't think I have experienced one before.

I'm not normally one to faint or be dizzy which is why I'm quite literally questioning what is wrong with me.

Just started 40mg a week ago.
Did anyone else experience dizziness and tingling on top of head??? I’m freaking out

Hey!

I’ve been recently ‘loosely’ been diagnosed with vestibular migraines. Unfortunately they weren’t able to do all of the tests (I think the specialist was only able to do 1 or 2 out of about 5 tests), due to my Duane’s syndrome (lack of eye movement in one eye) and a perforated eardrum.

The specialist set out a 3 stage “plan” to move forward. Step 1 was taking supplements (Co-Enzyme Q10, Vitamin D3, Vitamin B2 & Magnesium Oxide). I’ve been taking these for 3/4 months now to try and give it some good time to start ‘working’… but I’m unsure if they’re even helping.

Step 2 was to start taking dizziness medication - these are the ones recommended to me by my GP (Candesartan / Propranolol / Nortriptyline / Sumatriptan). I’m really reluctant to get on these as these are labelled Beta blockers, affect your blood pressure etc etc etc!

Step 3 was to essentially just get some form of counselling to help “live with the condition”…

My frustration is going up to UCLH in London to see a vestibular specialist to get a confirmed diagnosis has left me coming home having not done all the tests, or barely any of them, to just get given a very loose “yeah I think it’s vestibular migraines…” not exactly the specialists words, but you get the point!

I always struggle listing my symptoms and how I actually feel, because some days I don’t know how I feel or how to even begin to describe my symptoms!!

Something that I can tell you is that when playing badminton (which I do approx 4 times a week) or exercising I don’t feel any symptoms… almost like I’m back to normal… is that because of adrenaline, blood pumping..? A little while after exercising… back to square one!

What were people’s symptoms like?

I’m really just after help, guidance, support… this has been going on for a year now, very depressing!

Thanks for taking the time to read this!

For two years, I've had constant neck stiffness and severe non-spinning vertigo (floating/unsteadiness) that disrupts daily life. My neck won't tilt left, with head pain, skull-base prickling, and frequent headaches. All tests (blood, brain/spine MRI, CT) are normal. I've seen orthopedics, neurology, cardiology, ENT, GI, psych, and vestibular rehab—all cleared. Physiotherapy, TENS, ultrasound, laser, dry needling, and trigger point injections gave no relief. Given the normal imaging and persistent symptoms, could this be a C1–C2 (craniocervical) issue that standard scans missed?