Dizziness, imbalance, now tremors.

Hi Laurie,

Sorry for the really late reply.

Sad to say, but my symptoms seem to have taken a turn for the worse the past few weeks.

Tremors are now more common. Can feel myself shaking internally when I'm emotionally or physically stressed.

Floatiness and imbalance is now almost constant, and gets really bad while sitting down.

Also, I get this weird tense feeling in my gut, which seems to be amplified whenever my imbalance problem causes me to sway or tilt.

hyien.

hyien, what did they say abt the high white count?

hyien, when i was in the hospital the second time, my white cells were high. this seems to be the reason i was diagnosed with vestibular nueritis. they said you have some sort of infection you are fighting. my blood pressure was low at the hospital. however, when i was released and going from specialist to specialist my blood pressure was thru the roof, over 160 each time. to me, maybe i was fighting something, but now i know it wasnt related. my otolaryngologist did blood work- everything was normal including white blood cells. i am now on a beta blocker which has lowered my BP.

hi lizzy, they just told me it might be an infection.

hi hmoosey,

A otolaryngologist is the same as an ENT specialist?

I've been to ENT. Had my ears checked, balance and VND tests few years ago.

All came out normal.

I'm currently on betahistine. It helps for a couple hours with the vertigo/swaying, then it comes back with a vengence.

do you experience random muscle twitches all over your? or just in one spot?

did your doctor tell you what the cause of your vestibular migraines was?

hi

no- i went to an ENT- and when i questioned her about vestibular migraines, she said we were going outside her expertise and made me the appt with the otolaryngologist. also could be called nuero-ontologist. these are doctors that specialize in vestibular disorders. if all yoir testing has come back normal, you should see one of these specialists. all my testing was normal too. a betshistamine is not going to help, if thats all you are getting, my advice is to get out and find the right doctor. my doctor for vestibular migraines said it could be diet, it could be hormones. i am on a slow increase of meds. i dont have twitching, but there are so many symptoms. google these doctors in your area, what do you have to lose?

thanks, i'll check out a nuero-ontologist.

just curious, what exactly are your symptoms?

my initial symptoms i had severe vertigo out of nowhere, vision of floor on the wall. i would move my eyes and vomit violently. i was leaning to the left. hospitilized 2x- to stabalize me. constant dizziness for over 3 months, brain fog, confusion, ringing in my ears, headaches (but didnt realize it) at my worst, sound would make me vomit. lights, turning my head would send me in a spiral. unsteadiness, tripping over my feet. falling, feeling like i was falling. i was totally unfit. once i got to the right doctor and the right diagnosis, i basically have ringing in my ears left. and tiredness. every once in a while i get dizzy, when i go to the grocery store. while i was at my worst, the grocery store or mall would send me into a dizzy fit and brain fog. i had been misdiagnosed 2x as i said. bppv then vestibular nueritis. the doctors i saw before the nuero-ontologist never did the proper testing. there is testing that can rule out or in certain disorders. when i had the testing it 100 percent verified that the vestibular nueritis was a bad diagnosis. and then it was absolutely clear i had vestibular migraines. i have been on norotrytiline since august. a slow increase. so now i need this ringing to go away. its awful. but i also know i am lucky to have the right treatment and diagnosis. i never ever want to experience those symptoms again. my eye would just droop, they kept checking me for strokes and brain bleeds. these other doctors dont know so they really just pick a friggn diagnosis. its the doctor i mentioned that can rule in and out certain disorders. look up dizzy clinics and google the doctors i mentioned. you have nothing to lose. if i hadnt pushed and refused to accept these diagnosis i would have lost everything.

thanks. any idea what the name of the test conducted by your neuro-otologist is?

there is rotary chair testing, caloric testing. a bunch of testing that spins you to see your eye reactions. you wear goggles and watch a red dot. there is also testing where they pour hot and then cold water in your ears to determine if there is nerve damage. its very helpful in eliminating certain disorders. vestibular diagnostic testing. google it in your area and see what comes up.

I've had the dot test (think it's called a Videonystagmography (VNG)?) and hot/cold test (with air, not water) done in 2015.

Came out OK.

ok thats good then. mine came out fine too. which helped my doctor realize i have vestibular migraines. since yours was ok, then you dont have any damage. have you looked up the vestibular migraine symptoms. go to webmd it has a good description. i would look into this. i am on medication that has helped me a lot.

hmoosey, my VNGs/Calorics are fine too. I had 2 over the past 3-4yrs, both normal. I have weird migraines now... not all the time. But I get the dizziness, can't formulate words, horrible tinnitus, left facial symptoms, walk like I'm drunk, and tingling chills run through body. They found out last Spring that I have a very bad neck on the left- severe foraminal stenosis, pinched nerve, severe facet arthritis. My Neuro is saying my migraine attacks/neurological symptoms, are all from my neck. I believe it for various reasons. I had a cervical epidural last Oct that worked for 3 days. It took away all symptoms including tinnitus. Unfortunately it didn't last. Both Neuro and spine Dr's want me to try more meds. I just got a script for Effexor. Supposedly it's good for migraines with a dizzy component, and can help with the pinched nerve in neck. I also tried gabapentin. It helped pretty amazingly with the pain in my left neck, face, arm and shoulder AND the tinnitus was gone! But it made me woozy, and as soon as it wore off, the pain/tinnitus was back with a vengeance. So that's why I'm trying the Effexor... we shall see! I think if I fail this, next step might be neurosurgeon.

its a nightmare dizzy lizzy. and truly if it wasnt for this website i think i would still be misdiagnosed. i have the tinnitus and it is starting to drive me mad. all day every day. i dont sleep well up around 230-300am and i think partly because the ringing wakes me up. in the beginning when i was so sick i would have given everything to just only have tinnitus. now i just want everything gone. the norotryptiline has give me my life back. my doctor that i found is amazing and this is his expertise. so i am lucky. for me it is 100% vestibular migraines. i had the same migraines you described. but the meds have changed that. so no more confusion, not being able to find words, dizziness. now its a numb right hand. pain on one eye, eye droop, tiredness, and extreme sensitivity to noise. sends me over. its absolutely amazing how many of us there are, yet, most doctors dont even know about this. they only know BPPV. my doctor just increased my meds. i have to do visual vertigo exercises.

hmoosey, I'm so happy to hear you've found something that has mostly helped. Yes, this is all just a nightmare, I agree! I just wanted to mention- if your eye droop/pain is on the same side as your numb right hand, it could be an additional few things. I'm mainly thinking of the neck issues. No one suggested a cervical MRI to me- I had to ask for it. And my Neuro was shocked to see the spine issues, all on my bad side. The spinal specialist at first told me the neck issues that I had could only cause the numbness in my left hand, but not my facial/migraine issues. When the epidural took away ALL the symptoms, and later they ALL came back with a vengeance, he admitted that the pinched nerve at C5 C6 could be irritating structures upstream, essentially causing the facial/migraine issue. So go figure. There are also conditions such as trigeminal neuralgia and occipital neuralgia that can cause the eye pain/drooping. These can respond to drugs like gabapentin and botox injections.

In my case, after 6 yrs of this, I would RUN to the neurosurgeon for neck surgery if it weren't for the fact that my spine Dr told me this abt c-spine surgery: 1/3 get better, 1/3 stay the same, and 1/3 get worse. My Neuro disagrees, says in my case the issue us more straightforward, and odds should be better, but she's still wanting to try everything else first.

If effexor does not work, I'm going to have to find a way to deal with the gabapentin. It's truly the only med that took away every symptom. But I was only on it for a few days, and now the symptoms seem worse! Maybe ask the Dr abt gabapentin? My dose is very low- only 100mg. But I had instant relief within an hour or so of taking it. It wears off quick- like 7hrs. But my symptoms were still blunted the next day. I have to commute to work at 5am, 45min, and that's why I couldn't push through with the next morning wooziness. Supposedly that goes away in a week or so, but it's not possible for me to take extended time off right now. Literally the first time I took it my tinnitus was GONE completely. First time in 6yrs. Slept like a rock. The only drawback was that I was a bit stiff in the morning from sleeping so deeply.

hi dizzy lizzy. i have been on 50 mg of noro for a few weeks. i am starting to realize that the ringing is going away. at first there was no change. but now its less. i am praying that it will go away forever. usually its so loud at night or early am. bothers me when i try to sleep. its not the same i am realizing. my eye drooping is usually my left eye. seems to be correlated with a headache. my numb hand is always my right hand. before i started the noro it was there for several months. now its getting infrequent. i work too and have throughout this misery. its not easy. i am tired all the time. its shocking how many people are suffering yet have difficulty finding the right treatment or doctor. i thank God i found a good doctor who specializes in only this. i know i would have had to quit my job. i hope the effexor works for you. i have heard others taking this medication. the norotryptiline starting working immediately for me. so i know i am on the right path.