Vestibulopothy likley Vestibular Neauritis
Posted , 4 users are following.
Hello, I am new to discussion sites. The reason I'm reaching out is due to my ongoing issues with ear pressure, balance difficulties, nausea and fatigue. I became acutely unwell in June this year with my first symtom being ear pressure with I have seen ENT and Neurologist. My ENT gave me ten minutes of his time with a possible diagnosis of atypical migraine. My Neutologist diagnosed Vestibulopothy likley Vestibular Neaurtitis.
I have been off from my employment for many weeks and hope to return next week. I am concerned because I continue to have ear pressure and fatigue. My balance has slightly improved and I get occasional vertigo (dropping feeling/ brief spins).
Before all this started, 2006 I had significant spinning with a trip to ED and diagnosed with BPV. From that time onward I have experienced falling to the left and slight balance issues when tired.
I have a job that evokes stress due to the nature of work. I try to control my stress levels with exercise at the gym, but haven't attended since June due to extreme sensitivity to noise in my left ear.
I would love to hear from others who have experienced similar symptoms to me and whether you were able to return to work, and if so what strategies you used to manage?
Thankyou,
Lisa
0 likes, 7 replies
Golden_lover Lisa1625
Posted
Hi I recently got diagnosed with vestibular disorder. After my gastric bypass 2003 I had vitamin deficiencies .. neuropathy , relearned to walk with gait balance Drs said back then. Tinnitus is a big complaint . For me it’s to late to fix my extreme body malfunctions. But have them check your vitamin B-12& B-1 thiamine, that is what made me go off deep end. I do injections monthly . It’s difficult to do many things walk in water sand snow uneven surfaces. Vision & ears so important let me know k
DizzyLizzy68 Lisa1625
Posted
Lisa, its so hard to say for sure, as you're experiencing. I find it almost hilarious that your ENT diagnosed migraine, and Neuro diagnosed a vestibulopathy- it's usually the other way around! Anyhoo, I prolly sound like a broken record in my responses to everyone asking if they've had the VNG/Caloric testing while symptomatic. It can help discern if dizziness is coming from a vestibulopathy or central reason (usually migraine). I was told several yrs ago by a renowned ENT that mine was probably menieres. But 2 VNG tests, a few yrs apart, disproved that diagnosis. It is most likely vestibular migraine all along, triggered by perimenopause, and complicated by neck and jaw issues. I also have longstanding fibromyalgia.
Both Dr's are guessing using their best experience. I would lean toward migraine, as brief spins and balance issues are common with that. Brain fog, and visual disturbances are as well. Computer monitors, loud noise- all common triggers with migraine. The treatment is migraine preventative drugs. Most dont like them as they have initial side effects. It can take up to 2months at the proper dose to work, and many can't/won't do that...
Lisa1625 DizzyLizzy68
Posted
Thankyou for your response, I have had testing through an audiologist but I don't believe I've had tests such as VNG. I have spent over a thousand lately on specialists 😔.
I am 43 years and moving toward change of life. I have a long history of migraines but have not had one since the birth of my last child 16 years ago.
I have noted that many people receive several diagnosis and looks like little can be done apart from lifestyle changes.
My work requires me to look at a computer monitor 90 percent of the day.
With Vestibular Migraine would symptoms be ongoing? Mine have persisted since June, I do have good days though.
thankyou 😊
hmoosey Lisa1625
Posted
LIsa I agree with dizzy Lzzy. Look up vestibular migraines- I am currently being treated for this and the symptoms mirror BPPV Vestibular nueritis. I finally am getting my life back. I too did not think I had migraines but now that my head is clear I realized that I do. However- one of the main things with this is that you don't have to have the physical pain of the headache. So this can get misdiagnosed. Every symptom the VM has I have. Even down to numb hand and ringing/buzzing in ear. You need to advocate for yourself and try to see ENT / neurologist that specializes in Vestibular issues. I really thought life as I knew it was over. Now with the medication norotriptiline I am normal again. I've had a couple bad days but nothing that isn't manageable. Still can't grocery shop or even look st the ocean. I don't know if I ever will again. Don't discount VM because you don't feel the pain in your head.
Lisa1625 hmoosey
Posted
Thank goodness you are starting to find yourself again as this certainly is very challenging.
My Neurologist scoffed at the atypical migraine diagnosis from the ENT specialist.
I find this whole process very frustrating, the cost in finding help is ridiculous and the differing diagnosis from specialists is unhelpful.
DizzyLizzy68 Lisa1625
Posted
I had responded a second time, but do not see it here. If I'm repeating myself, forgive me!
Lisa, yes the symptoms of vestibular migraine can be ongoing. For me, I had ongoing balance issues, ringing in ears, fuzzy head, neck pain and head rush feelings when standing. Then I would get "spells" when it got worse- severe dizziness like on a rough boat, jelly legs, wavy vision. Those would last about 1-2 hrs then I'd have slight headache. This was last spring- I had been doing much better since this all started abt 5yrs ago. The trigger last spring, I think, was that I developed hot flashes for the first time. Hormones are a very powerful migraine trigger.
The fact that you have a history of migraine, even tho very infrequent, is telling. I had infrequent migraine- maybe 1 every 5 yrs. Then at age 45 all this vestibular crud started. I was told by Neuro that this type of pattern change was not uncommon.
You could try migraine preventative drugs. Also the computer could be triggering you- get a blue light blocker screen. If fluorescent lights in your workplace bother you (they really bother me when I'm flared up) there are migraine glasses that block blue light. And look at your diet and meds- birth control pills and other hormones like HRT can be helpful or hurtful. I could never take BCP because it triggered migraine with aura within days. Then during perimenopause, I tried progesterone, which I finally linked to my dizziness. Recently, with hot flashes triggering me, I take low dose estrogen and it helped my dizziness. So obviously it's pretty complicated with hormones, very individual, and can totally change for the same individual!
hmoosey Lisa1625
Posted
Lisa- I find this entire thing lonely and discouraging. Doctor after doctor who don't knknow what's wrong. Throwing diagnosis at me. Hoping something will stick. I have had to be the one to bring up everything to the doctors. And with all this brain fog- it's just been survival instincts kicking in. I was the one to bring up the migraines. These meds have helped so much- but I'm still not 100%- I'm hoping with my appointment on the 24th I will get more information. And more testing. The ENT is scheduling another catscan. She mentioned the possibility of a small bone in my inner ear thinning- which can cause the symptoms of having trouble in grocery store and looking at the ocean and getting nausea. Apparently-the 2 previous catscans didn't focus on my ear. Its lonely and exhausting. I went out with my family yesterday and a 10 minute drive in the passenger seat threw me. I need to be the driver.