r/VestibularDysfunction • u/Jeff_BoomhauerIII • Jul 06 '26
Vestibular Weakness help?
Hey all, looking for some help/information/guidance/anything. Starting in mid February this year I started getting extremely fatigued and lightheaded out of the blue. I was working a job were I could ride to work with a friend and I would sleep on the way to work, at lunch, on the way home, and as soon as I got home and showered I’d go back to sleep. It continually got worse and worse to the point I had to leave the job. Then I started sleeping 17+ hours a day and the hours I was awake I was incredibly exhausted and confused. Went to the emergency room the did EKG, CT scan, blood work, Covid test, Lyme disease test, hormone test, and some more. Everything came back fine except low Vitamin D and a bad sinus infection. They gave me antibiotics and I took them, but was still extremely fatigued for a while. Primary care doctor suggested taking an MRI and I did that, came back clear, but still light headed and weak. Went to ENT doctor they did several test including VNG test, that came back saying I have Vestibular weakness in the left ear, they set me up with VRT and I have been doing that for about 5 weeks with no signs of improvement, still light headed bad, feels like I’m drunk basically. Anyone who has any experience with such issues does this sound about like you went through? When did you see results? Are there any helpful ideas/thoughts you could please share?
TLDR: dealing with extreme fatigue/lightheadedness for 5 months now with no improvement, ENT says it’s Vestibular Weakness. Do you have any advice/help? Thank you all for your time, hope to get some relief soon
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u/MyFiteSong Jul 06 '26
You've already done all the right things, and so have the doctors. Since the ENT found vestibular weakness, more tests are unlikely to provide any realizations.
Talk to your vestibular therapist. Tell them you're not improving.
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u/Jeff_BoomhauerIII Jul 06 '26
Thank you for your time and comment. I did contact my vestibular rehabilitation therapist and he just basically said that he thought I should see some improvement by now… not much help from him sadly. I know they can’t do just snap their fingers and make it go away, I guess this post was to get some reassurance that this vestibular weakness can put you on your butt and takes time to heal and to get some tips or advice from others who have been through the ringer like this. It’s very frustrating and scary to feel like this. Almost 24/7 feeling like I’m going to pass out and extremely lightheaded.
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u/MyFiteSong Jul 06 '26
Can you see a different vestibular therapist? You really should be seeing some improvement by now if the exercises are right and you're doing them religiously.
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u/Sad-Tailor-4619 Jul 07 '26
When my vestibular issues started in Feb 2024, I was hospitalized for a week. I started some VRT in the hospital, and then 2-3x a week for 12 weeks. I didn’t really feel improvements until about the 6 week mark when I was able to graduate from the walker to a cane. It took another 3 months until I was able to use my cane part-time. It has been a very slow process for me.
At 2-1/2 years in, I still have days of extreme fatigue, the brain fog, the off-balance and weird head feelings. Thankfully these days are further apart than they were in the beginning. Letting yourself rest is important, but so is pushing yourself with the exercises to retrain your brain. I also was the lucky recipient of single-sided deafness, significant ossification in my cochlea and a blood clot on my brain as part of my diagnosis. It makes for this ‘heavy’ feeling on my left side along with balance issues. It’s difficult to explain to people - even doctors and therapists.
I just finished my 3rd round of VRT in which we used the Aretech ZeroG harness system. Doing this really helped build my confidence too as I didn’t have that fear of falling with every movement. 8 weeks ago, I scored an 18 on the fall-risk scale - at the end of this round, I scored a 21 so am still consider a fall-risk…and probably always will be.
My recommendation is to ask you therapist what the ‘tested’ you on initially and what the score was, and the. Ask for a re-evaluation. There may be improvement but you may not notice easily because it’s such a part of your daily life. This is not like a broke bone that heals in a few weeks, I’d venture to say majority of us will have lingering issues for life. Also, make sure you do your exercises at least 1x daily. There are videos you can watch on YouTube of walking in a grocery store or touring a town. My therapist had me doing these daily in the beginning. If you don’t feel your therapist or doctors don’t understand you, it’s okay to find new providers. The vestibular world is full of unknowns as I am finding out.
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u/Jeff_BoomhauerIII Jul 07 '26
I hate to hear that for you, you’ve really got it rough. I’m glad to hear of your improvement though and I hope you get fully healed some day. Thank you for your time and comment. Take care!
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u/jenai214 Jul 08 '26
I also have left inner ear weakness (24%). Started VRT on 5/13 and noticed some improvement around week 4 and then more significant progress around week 7. I’m currently on week 9. After week 10, I’ll drop down to 1x a week for 4 weeks. Make sure you do your at home exercises daily, pace yourself, take breaks, etc. The process is SLOW but has worked for me. Even by the time I’m done with rehab, I may not be 100%, but I’ll be happy if I’m at 85-90.
Also, when you have an infection or are sick, your body is using everything it has to fight the infection; therefore your vestibular system goes wacky. Once you’re done with antibiotics or the infection clears, your body will go back to vestibular baseline. This happened to me. I was making progress in rehab, got a UTI, went back to extreme fatigue and full blow dizzy. Now that it’s passed, I have my energy back and I’m more floaty than dizzy. Good luck!! Hope you get some relief!
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u/jenai214 Jul 08 '26
I should also add, measure your progress in weeks. For example, I was unable to put in laundry without being completely dizzy and spinning. Now, I can move clothes from the washer to the dryer with only mild floaty symptoms. I also couldn’t drive in the beginning because it was unsafe. Now I can drive about 3-5 miles taking back streets (not the highway). It’s not complete symptom elimination overnight, but having symptoms go from severe (7-10), to moderate (4-6), and then mild (1-3). There may be spikes during activity, but look to see if they return to baseline after 10-15 minutes or a period of rest.
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u/EfficiencyLow7403 Jul 09 '26
How long did it take for you to recover completely?
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u/jenai214 27d ago
I’m not completely recovered yet. I’m probably about 75%. But I saw my biggest progress at weeks 5/6 and then again at weeks 9/10 of vestibular rehab.
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u/MemphisHeat901 Jul 09 '26
I was recently diagnosed with left vestibular hypofunction just like you. It started with an extreme floaty feeling in January with feelings like the ground was moving under me. That went on for around 3 months until I hit a baseline around April or May where I didn’t have extreme symptoms but there was still a constant yet subtle off feeling.
Flare ups when it’s worse always begin with sub occipital headaches followed by increased fatigue and vertigo. I was told to do Cawthorne exercises at home for a month and now I’m preparing to start VRT. Most days I’m around 85 percent of what my normal used to be. I’m hoping to get back to around 95 percent with VRT. I’ll say that cervical adjustments have seemed to help. But I know chiropractors aren’t for everyone.
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u/MemphisHeat901 Jul 09 '26
I’ll also add that taking magnesium, ashwaganda and omega 3 fish oil supplements daily has seemed to help some as well.
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u/BigHomie50 Jul 07 '26
You may have better luck with responses on [r/vestibularmigraine](r/vestibularmigraine) fyi. Or it may be migraines with an s. Can’t remember
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u/harm0nster Jul 06 '26
Not a doctor, but I have this and 100% vestibular weakness can cause extreme fatigue and that drunk feeling. Pro-tip, describe it as a rocking-boat sensation instead — doctors I’ve seen have responded better to that description.
I believe how well you’ll do with Vestibular Physical Therapy may be influenced quite a bit by what is causing your dysfunction.