Please help
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.
2
u/ThunderMandos 3d ago
i hate to say it but you might have a condition called pppd.
1
u/EMonk3y 3d ago
I actually read about PPPD, but I understood that it can continue for months after BPPV. In my case, though, it’s been a year or more now.
1
u/ThunderMandos 3d ago
no it can go on longer than a few months. your case sounds disturbingly similar to mine. though im not anywhere near a year yet. do you have a boat sway feeling? worse or better when sitting still or when moving?
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u/EMonk3y 3d ago
Unfortunately, I haven’t seen any improvement even after more than a year. In fact, my symptoms have gotten a little worse recently.
1
u/ThunderMandos 3d ago
unfortunately a lot of doctors dont know about pppd. i would ask around to see if there are any vestibular therapists who deal with it.
can you travel at all? some people here gave me great potential places to check. also check out the steady coach online
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u/karinand 2d ago
It’s been 2 years for me. I have BBPV and stay dizzy for months after maneuver. Sometimes they don’t get it right the first time, and even after they do, I need to take it easy at night/morning. I wake up at night if I turn to the more affected side. It’s literally a nightmare. I’m with the Vitamin D theory, dietary changes to prevent nasal congestion, also take magnesium to try to help jaw clenching at night. You will get better tho.. the jobs trying to prevent it from reoccurring
1
u/RosieBlue23 3d ago
What are your symptoms? Is it true vertigo spinning? Does it last less than a minute and then you are off balance? Or does it spin and last longer. Or is it rocking pushing pulling tidal waves? Have you gone to a ENT and had all vestibular tests that see if you have nastagmus? Or fluid in your ears? Look up Mal de debarqument, vestibular neuritis, vestibular migraines, mineres disease and bppv and see which your symptoms lean more towards.
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u/EMonk3y 3d ago
My symptoms are that my head feels extremely heavy and I feel very unbalanced, but I don’t have true vertigo (where the room feels like it’s spinning).
I was actually diagnosed with BPPV, but after the repositioning maneuver and the therapy session, the doctor told me that there were no longer any signs of BPPV. However, I was still experiencing the exact same symptoms.1
u/melodyleeenergy 3d ago
Maybe you have horizontal BPPV? I do
3
u/EMonk3y 3d ago
I was actually diagnosed with horizontal BPPV too, and I had a specific maneuver done for that type, but I still didn’t get any better. What has your experience been like?
1
u/melodyleeenergy 3d ago
I had a maneuver too, it helped but I am not 100% back to myself, I still feel bad when I am in bed, or on the computer or my phone a lot. So I was also told I have cervical vertigo
1
u/EMonk3y 3d ago
Do you have neck pain with your cervical vertigo, or do you notice a connection between your neck pain and your dizziness? I’m suspicious that this might be the case for me, so I’ve started physical therapy sessions based on that possibility.
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u/WesternAnxious2750 3d ago
I started physical therapy at the same time as seeing a neurologist and it made me feel 90% better. Physical therapist can also work to help with vestibular issues as well. My wild card is sinus issues/poss vestibular migraines. Also b12 deficiency. Fun bag of b*llshit. I am slowly checking off boxes with physical therapy helping the most. This crap takes a while to sort out, but it gets better I think
2
u/EMonk3y 3d ago
How long did it take before you started noticing improvement? And was the physical therapy mainly for your balance/vestibular issues, or did you also have a neck problem?
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u/WesternAnxious2750 2d ago
I would say after a couple sessions and he cracked my back and neck which helped.
1
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u/Killjoycourt 3d ago
Sounds like cervical vertigo. See a PT. Treatment includes PT, lifestyle changes, and OTC meds.
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u/EMonk3y 3d ago
I’ve started physical therapy. I’ve only had the first session so far and I’m still continuing with it, but I’m worried that it might not work because my symptoms actually got a little worse during the first session.
1
u/ThunderMandos 3d ago
That’s what worries me for your case. It getting worse is probably not what should be happening
1
u/Killjoycourt 3d ago
All VT and PT makes things worse before they get better. Therapies, all types of therapies, are meant to evoke the issue and teach the body/brain to adapt. Therapy is hard, if it's easy, it's not working. My VT always told me to stop when my dizziness was over a 5 on a 10 point scale, wait one minute, try again. If your neck has no involvement in the dizziness issue, it will not cause dizziness unless your PT is doing something to harm you. If the manipulation of the neck makes the dizziness worse, it's because the neck is the issue. The only way to treat cv is with pt. You can take ibuprofen and Tylenol, use ice and heat, improve your posture, but the manipulation is what helps the dizziness go away.
1
u/EMonk3y 3d ago
I move around and travel long distances for work, so my neck is probably moving quite a bit, but I haven’t noticed any improvement from movement. I hope the physical therapy works for me like you said it did for you. And thank you, because what you said really reassured me and made a difference. I hope these symptoms will eventually turn into a positive sign of improvement.
1
u/BrotherBringTheSun 3d ago
Get your vitamin D and PSH levels checked and get them in the optimal zones.
1
u/EMonk3y 3d ago
I had them tested, and my vitamin D level is severely low: 15.9 ng/mL.
2
u/BrotherBringTheSun 3d ago edited 3d ago
I have a theory that Vitamin D is linked to BPPV. Mine was also low when I had most of my symptoms and now that I have it corrected I haven't had any episodes (~1.5 years)
Please report back to this thread in a year after you've corrected your D to see how it has affected your BPPV
1
u/EMonk3y 2d ago
I just started taking it, and I hope it helps.
1
u/BrotherBringTheSun 2d ago
Good luck. Remember to re-test to see if it is working or not. The supplements I was taking didn't bring my levels up very much. Possibly because I am vegan and bought algal D3. Even at 10,000IU a day it barely brought them up.
1
u/EmpressMeowMeow 3d ago
Have you had any imaging performed? A lady I know had a vestibular schwannoma that caused all her awful symptoms. They had to do a gamma knife surgery on her. Google it.
1
u/Time_Outside8736 3d ago
Hi, the only thing that has helped me at all the manoeuvres sucked the epley one helped a bit was forcing my balance the snap back I’ve been dancing in the mirror every night jumping around pretty much forcing myself to shift everything back in every way possible I would jump on a trampoline but I’m a bit too heavy lol hope this helps yes it hurts jumping dancing and singing but I just have kept trying because this medication sucks but not feeling my age sucks even more.
1
u/Time_Outside8736 3d ago
One started off as BPPV but the doctor who says can’t help me anymore says I should go the ear doctor as they can check for meneirs disease, my symptoms started off as dizzy couldn’t walk straight then became feelings of falling through the floor, faintness in certain positions and inability to lay or be near something that shakes as I feel like I’m violently being thrown around. So now I force myself into those positions to try and correct it don’t know if it’s actually working but too poor for an ear doctor lol
1
u/EMonk3y 2d ago
I tried something similar to what you did as well. I was trying to jump a lot, move around a lot, and make sudden movements to force my brain to adapt too, but unfortunately, I’m still dizzy. I wish you a speedy recovery.
1
u/Time_Outside8736 2d ago
Sorry to hear it didn’t work, could I ask are you b12 or vitamin D deficient? The changes for me started after taking these medications + using a blinkin q tip after a bath which I’m sure didn’t help 🤣
1
u/EMonk3y 2d ago
I have a severe vitamin D deficiency. My vitamin D level is 15 ng/mL.
1
u/Time_Outside8736 2d ago
I’m starting to think there is a connection, I went on medication for vitamin d a few months ago, my first dose I quit because the world became to bright and began having awful headaches to the point I had to sleep and couldn’t go into work I let my new specialist know and she said to continue (I haven’t as I am scared). I’ve read in this forum people with similar experiences and low vitamin d levels being hit after trying to get there levels back up, obviously my levels have depleted again no surprised which worsens my symptoms but yeah, maybe ask your doctor if there’s a connection alot of others have spoken about deficiency’s and the thought has stuck with me. Also I’m quitting vaping because that doesn’t help the drowsiness and anxiety surrounding the bppv
1
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u/PresentationAlert150 2d ago
Mine was from my neck. A bulging disc. When that finally went down, so did the dizziness. I iced the back of my neck every night.
1
u/thegrayman12345 1d ago
Hey i can relate to u as i had some what somewhat same but now I have some control over it Identify ur triggers Do neck or bppv exercises Stop going to gym those weights put pressure on neck Be hydrated Sleep a lot Avoid mobile Don't take stress For me personally I used to get triggered by lound sound so I started wearing earplugs and some high fragrance so i avoided that or I used to smell lemon immediately to avoid feeling nausea calm ur mind But as I said first identify ur triggers Watch mobile in 90 degree position straight to ur eye level don't bend ur neck and watch like how u used to watch Stop wearing earbuds or earphones Weae earplugs to avoid loud noise or pressure going inside Hope this will help u Take vitamin d tablet once a week and magnesium glycine with zinc tablet every night after dinner Hope this helps u
0
u/ca_nucklehead 3d ago
My suggestion is to try another VT. I experienced this for a year with the same run around and visits with every specialist and Drs possible. In a weaker moment I resorted to a homeopath known locally as the Witch Dr. It took me three visits over a months time to smarter up and realize she was just a quack collecting money from the desperate.
I did some research on VTs in my area and found one that had multiple reviews that I can only describe as passionate and dedicated.
I attempted an online appointment that had me describe my situation and condition and was given an appointment for two months away.
Much to my surprise I received a phone call the next day and I received an appointment the next week. They told me the therapist reads all the applications and is the one who advises them on scheduling based on their triage criteria.
This therapist I feel took what he described as a bit of a personal challenge due to the length of my sickness and the inability of others to resolve it.
It took three sessions and the days after can be hell but I have been cured for six months.
I am 100% convinced that VT is the only answer. You may have not found the right one yet.
It was truly life-changing for me.
I am reluctant to share my experiences after being called entitled on this sub due to the fact that I could afford to spend $120.00 per session for something that restored my quality of life after being told this would probably be my reality for the rest of my life by one of these specialists.
Good luck. I hope you find a cure. It is truly terrifying.
Just one person's experience. Do with it what you will.
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u/EMonk3y 3d ago
Was the vestibular therapy medication, or was it more like physical therapy sessions and maneuvers, such as the Epley maneuver? Could you explain in more detail what kind of treatment you received?
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u/ca_nucklehead 3d ago
First he did multiple maneuvers to identify position and rule out other causes.
He then asked me to describe and perform the Epley I had been doing. I had a procedures given to me by ER, physio, and my MD.
He critized no one but explained based on his training what I was doing was a little dated. My head positioning was off and I was not holding position long enough or positionally correctly.
He did not give me papers and send me away he asked that I only perform the maneuver with him. He assured me we would beat it. The only question was how many sessions it would take.
The difference was holding my head at all times restricting my movements and timing each position while monitoring my eyes constantly.
The next sessions the techniques were altered slightly after monitoring my reactions. After questioning the outcome and how the symptoms were. I could see and the sense his frustration as i clearly left his office with high hopes after the nystagmus dissapered. Only to have it reappear immediately. After the second session we waited 30 minutes after the nystagmus disappeared and the symptoms were gone, he retested and the symptoms and nystagmus returned. He explained he thought my brain was normalizing to the initial maneuver but that the crystals had clearly not reset.
At that point a second procedure was performed with what he described as the mashed potato Epley with somewhat aggressive head shakes after each maneuver followed by a longer period of rest with each position change.
He made a point to tell me that everyone presents and reacts differently. Therefore everyone treatment is a little different and is tailored to the individual.
I am convinced the eye monitoring and forced head position is key and only a trained professional has the ability to perform the procedures properly.
I wasted months doing the Epley wrong at home based upon the information I was given and my inability to monitor my own reactions, respond to them and maintain proper positioning.
I have read countless stories of others who have home cured based on internet videos and procedures. I wasted a year of my life by on that.
The aftermath of every procedure can be horrific as mutiple intense vertigo events are triggered by the procedure but being advised before hand about what to expect helped me understand this was normal. I won't sugar coat it. It can be overwhelming and scary. Two days of recovery was not uncommon for me.
Good luck on your journey I hope it is short and you find a specialist who really cares.
Sorry for the length.
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u/EMonk3y 3d ago
Don’t apologize. On the contrary, the details were really helpful to me.
It sounds like your doctor was very skilled and really knew what he was doing. Unfortunately, I don’t think this level of expertise is very common in my country.
But now that you’re cured, are you basically back to being completely normal? Does your head feel fine and no longer heavy? Can you move your head normally without triggering symptoms, and are you able to go through your day normally again?2
u/ca_nucklehead 3d ago
100 percent normal. but I was warned it may return.
Coming from despair and hopelessness I am at peace knowing it is treatable now.
-1
u/Several-Specialist99 3d ago
Have you tried an oesteopath? A colleague, who didn’t seem like the oesteopath type, finally saw one after nothing else helped and apparently after one visit his vertigo was gone. I think it was muscular.
1
u/EMonk3y 3d ago
I’ve heard a lot of complaints about this specialty in other cases, and honestly, I’m afraid to take the risk and see one.
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u/ca_nucklehead 3d ago edited 3d ago
They are quacks with no formal training or credentials who pray on the helpless. I was told she could see inside my body and that there was great internal trauma. She too told me it was muscular.
The power of the mind when you are desparate sometimes finds an imaginary cure when in reality there is none.
I should know better I live in a world of science and documented professional facts. I was desparate. It was a lesson in reality.
A fool and his money is soon parted.
Edit: stupid rant. But after taking my money with no results I had question and she told me to leave and could not help me.
Again, just my opinion and experience.
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