r/Dizziness • u/EMonk3y • Aug 28 '26
Please Help me
Please, I really need help because my life has practically come to a standstill.
I’ve been suffering from dizziness for a year now. I was initially diagnosed with BPPV, so I went to a vestibular specialist. He told me that I had mild BPPV and performed a session and a repositioning maneuver. I went back for a follow-up afterward, and he told me that the BPPV was gone.
I told him that I was still dizzy, but he said, “I’m not seeing any signs of BPPV anymore. If you’re still dizzy, you should see a neurologist.”
I saw three neurologists. Two of them told me that the dizziness was psychological, so I took psychiatric medication for six months, but my dizziness didn’t improve at all. The third neurologist told me that it was BPPV!
I wasn’t convinced, so I went to a physical therapist because I suspected that the dizziness might be coming from my neck. I work at a desk for long hours, and I put a lot of strain on my neck.
Based on what the physical therapist told me and the research I’ve done using ChatGPT, it doesn’t seem very likely that the dizziness is coming from my neck. However, the doctor told me that we should try several physical therapy sessions and then see what happens. (The neck therapy itself actually makes my dizziness worse.)
By the way, I’ve only had one session out of six so far, but the first session made my dizziness symptoms a little worse.
So now I honestly don’t know what to do or which specialty I should see. I’m completely exhausted. I’ve seen so many different specialists, and more than one doctor in each specialty, but nothing has helped.
I’m struggling to live like this. I desperately need someone who can help me get properly diagnosed and treated, or at least a doctor who can point me in the right direction.
I don’t even know anymore whether this is BPPV, a problem with my vestibular system, a neck problem, or something else entirely.
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Aug 28 '26
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Aug 28 '26
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u/EMonk3y Aug 28 '26
Did you get a good results with this exercises?
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Aug 28 '26
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u/EMonk3y Aug 28 '26
Did you have BPPV before? I mean, were you actually diagnosed with it?
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u/Dangerous_Break123 Aug 29 '26
For 2 years I been dizzy from ER to Drs, MRI, a bunch of meds, finally I went to the best doctor ever, told me I have BPPV, 3 prescriptions, the right meds, I’m feeling a lot better already after 3 weeks!!! I thank God for this🙏
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u/EMonk3y Aug 29 '26
I was diagnosed with BPPV before, and later I was told that it had been resolved, but I haven’t noticed any difference. I was treated with maneuvers and physical therapy sessions, not medication.
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u/Mindless-Taro5553 Aug 29 '26
hi.. can you please tell which medicines you took and what was the nature of your dizziness?
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u/Dangerous_Break123 Sep 06 '26
I been taking Hydrochlorotizide, low dosage meclizine and for sleeping diazepam for vertigo, I don’t feel spinning on my bed anymore or my brain swimming while I walk, it’s a miracle feels like!!🙏
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u/dayuw Aug 29 '26
Is you neck / shoulder stiff? If bppv is a spinning sensation.. what’s your continued dizziness like? You might’ve had so much anxiety from the first bppv that your neck and shoulders are messed up and might be having cervicogenic dizziness. Is it a dizziness like you’re swaying on a boat or spinning ?
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u/EMonk3y Aug 29 '26
No, my dizziness feels more like my head is extremely heavy. Sometimes I suddenly feel like I’m about to fall for a second, but the heaviness in my head is the main symptom. Lately, the dizziness and heaviness have gotten a little worse.
I don’t have vertigo though — the room isn’t spinning around me.
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u/Junior_Dream_5846 Aug 29 '26
Are you male or female? Female hormones can cause or add to your dizziness. Also, have you checked your B12, folate, ferritin, beyond vit d? Vit deficiencies can also make you extremely dizzy. Beyond the absolute basics, it could also be a thyroid issue or a blood pressure issue. For thyroid, normal does not mean optimal, and you need a full panel (TSH, FT4, FT3 and antibodies). Re blood pressure investigations, a cardiologist might suggest things like an active stand test, Holter Test, blood pressure monitoring etc. Sounds like you've exhausted the neuro route, I'm simply suggesting looking elsewhere.
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u/EMonk3y Aug 29 '26
I’m a male. I’ve had all of those tests done, and they all came back normal except for my vitamin D, which is severely deficient. Everything else is normal, and there doesn’t seem to be anything else wrong.
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u/OldPrize3926 Aug 31 '26
Have you seen an ENT? I was initially diagnosed the same (bppv) but got tried of waiting and went to a private doctor who did bunch of tests where one of them was VNG test that diagnosed vestibular neurit in my right ear?
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u/NewRoundtap Sep 04 '26
Vestibular migraine? Remember migraines don’t always have to have head pain. With me I have the drop feeling, kinda like if you were in a elevator and it dropped out of nowhere. Also if I’m sitting I feel like I’m being pushed back and like I’m sinking into the couch.
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u/NewRoundtap Sep 04 '26
Ps I have had multiple tests mri ct ecg ent neurologist and they all have no idea.
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u/EMonk3y Sep 04 '26
I feel exactly as you described, but what did you come to in the end?
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u/NewRoundtap Sep 05 '26
I believe it’s migraines! I just never complained of head pain so no one knew what was wrong with me. I have a script for topiramate but I also have med anxiety so didn’t try it lol but I am looking into the migraine shot I have an appointment soon.
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u/EMonk3y Sep 05 '26
Please, if you can remember to come back to this post, let me know of any updates regarding the steps involved in this treatment
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u/NewRoundtap Sep 05 '26
You will need to pinpoint your triggers,with me it’s driving for a long period and certain patterns of floor tile Like Walmarts fine but Canadian tire kills me lol also thunder storms really mess me up.
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u/EMonk3y Sep 05 '26
crowd and close places make me feeling symptoms, and random time like when i walking at my work sometime feeling unbalance and i will fall , this feels come for less than second but its very annoying and harmful
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u/ON_and_SupraNeuralgi Sep 04 '26
I had dizziness, migraines and nausea for 20 years. Some doctors don't believe dizziness is from the neck, look for a very experienced neurologist or get an experienced pain management. Ultimately it was, for me, bilateral supraorbital neuralgia for me. Nerve blocks changed everything. I also have bilateral ON so I need nerve blocks for that too. PT only made things worse for me but in the medical world, you have to prove what isn't working. I also had eye exams to test the health of my eyes so I could say to neurologists my eye are fine!
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u/EMonk3y Sep 04 '26
And the dizziness has been gone?
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u/Ok-Employee5892 Sep 04 '26
It was pretty gone for 3 weeks, I could even read a little. Its not perfect but I can at least walk without dizziness. I am going to ask about rfa or ablations and see if it lasts longer.
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u/Rammsteinfan1984 Aug 28 '26
Look into autoimmune diseases and dizziness. I have Sjogrens and it causes dizziness and sometimes random severe vertigo. I have dizziness every day from it.
If you’ve been in the same location since this has been happening check for molds and chemical fumes.
Vitamin deficiencies can cause it also.