I just had another appointment with my eye-neurologist, and while I really like him, I am getting really frustrated with different doctors giving different diagnoses and prognoses.
He just told me that vestibular nerve damage (neuropathy) is not reversible. Ear doctor said it was. PT says you can retrain your brain to get your balance back. Other neurologist says it's inner ear, not brain. Other PT says it's caused from the BPPV, other ENT doctor says it's not. With so many different possibilities, what am I supposed to do. They pat you on the head and tell you to come back in 3 months. I have read so many articles, I'm feeling like I have to diagnose this on my own. Argghhh, frustrating. Can anyone relate?
MRI did not show anything unusual, which I am thankful for, but did not provide a source of the pproblem either. Now I am thinking maybe I have vestibular migraines, but I'm not sure that's what it is.
I get migraines, hear perfectly, feel dizzy when I walk or ride over a bumpy road (oscillopsia). I feel like I'm walking on a balance beam that is sitting on a trampoline!
All I know is when I move my head even a little, everything swirls and I lose my balance. And if I look at lights at night and move my head (or even my eyes, now), I see streaks of lights behind them, trailing in my vision (I guess that is palinopsia). My vertigo (room-spinning, BPPV) is pretty much gone. 'Starting PT next week, but I want to know if it will get better before I waste my allowable visits on an incorrect diagnosis! Does anyone know what physical therapy can do for me, and what it can't?
P.S. I have mild peripheral neuropathy, had a shingle vaccine last year, before this all started, and feel the feeling in your head that you get if you are very tired, even when I'm well-rested. I veer sideways when I walk, have to hold onto something when I walk, even if it's just touching the wall or walking with a shopping cart.
Hmm, wouldn't you think that this was such a serious epidemic of like symptoms, someone would have now seriously addressed our issues? The fact that they haven't I guess points towards the fact that the Drs et al, just don't understand enough about issues of the brain to make any headway. You describe how I react whilst on my long and meaningful walks (usually over 10 k's along the ocean) and the fact that to the causual onlooker, I must look rather p*ssed. Having completely recovered two and a half years ago, I thought that was the last of it, but no, six months ago it came back with a vengeance and stays in the form of the occasional full head and slight pain in the skull behind my ears and of course the dreaded loss of balance should I look up suddenly or around, I just try to minimise these movements. I am on anti stress medicine for a non-related issue and I am sure that they help. I long one day to read that some miracle cure has been found and until then I wish you well with your research and that you resume some form of normalcy meanwhile. Regards, Jonathon
I'm so frustrated at the moment , I just cant seem to get through just how bad this is , waiting for scan , taking ages , I cant make out why my eyes feel so bad with it , I end up feeling all swimmy , there now putting it down to anxiety , but that's not how it started , it's the doctors that making me anxious
i know how you feel ive been suffering for 19mths virtually housebound and no 1 knows whats wrong feel as if my lifes over been on loads of different tablets i was diagnosed first mennieres then vestibular problems then silent migraine then a chemical imbalance in my brain then b12 deficiency i really give up hope you feel better soon x
I totally understand, have been through all his too, and still there. I bangs on, and on about my eyes, no one listened. I even asked to be referred,to a well know eye hospital ,in London (I,d been patient there years ago for Iritis), had a thorough check, nothing wrong per se with my eyes. I do,know that when my vertigo is bad, my eyes are worse and I want to,keep,closing them, and /or 'fluttering' them . But I,now have learned that this is all because my eyes, my ears, and my vestibular system (Which I think,of like a spirit level,,that isn't level!) is out of Sync and because the eyes are having to work ,overtime to keep me balanced, they 'play up', which is hardly surprising eh? this is why I feel, when the physios give us these exercises with either our eyes opened or closed, our reponses are different because closed we have lost that element that is helping, but sometimes when they are open the signals to the brain get confused. Does that makes sense?
Hi Dee, I could have also written your account (except I have no BPPV). The balance portion of my inner ear atrophied (kaput from aging) but still has nerves sending confused messages to the brain. Around half of we unbalanced patients are idiopathic (no diagnosis). We do not have cure unless our brain compensates. I seem to be stuck after 3 years. My vertigo expert Dr said he could not diagnose anything until after my autopsy (lovely) - I only ask him for diagnosis once a year.
I found reading "The Brain that Changes Itself" helpful even tho' I am stuck.
Ditto - I hear perfectly, feel dizzy. I feel like I'm walking on a balance beam that is sitting on a trampoline! It is very fatiguing. Shopping and twisting, turning,working in a small kitchen make more dizziness.
I got one interesting fact from PT. The faster you walk, the brain gets more info and you feel a little steadier. It confuses neighbors who note sometimes you look as if you are walking fine. I can appear ok with furious concentration.
I would definitely do physical therapy - PT, any resulting compensation would be good. Early PT gave me sciatica for awhile!! Did not need that. You need specific balance PT, not the general strengthening PT. I was in rehab and they had no balance PT.
No exactly what you mean , I feel like I need to close my eyes a lot , or cover one up , just spoke to my doctor again , waste of time ,
He wants me to go down the mental Heath route , as I'm so anxious , I said wouldn't you be anxious if you were like this since October the 12 th , and still waiting for test , it's the doctors that's making me anxious ,
I should have said Vestibular Rehabilitation Therapy or VRT (not PT)-
Keep googling and researching.
Yep not surprising it's because they ar not educated enough in the vestibular system and they are basically guessing a lot and going along with whatever is in their medical,journals!! and the 'mental,health route' is heir last resort to save face!! (Sometimes including anti depressants which I categorically refuse to take as it actually can make things worse as you can't take them forever no when you come from the you're back to square one because the cause fm he issue is still there!!!). like you I have said the same thing about the doctors and lack,of satisfactory treatment to makes me frustrated, not anxious!! I,told my GP that once and I use d a B word !! iF he gets pushy on that, just say the only mental,health therapy you would,find acceptable,would be Cognative Behaviour Therapy! nOt because it's a solution as such, but I had 8 sessions and got an intelligent woman who listened,which is very important. And she gave me some info and tools,to,work,with whixh i use from time to Time. also order some Periwinkle tincture on line as I've done as its meant to be good for brain/vertigo stuff.
And that is the shame of it that you have described so well. We spend so much time and energy and money, so desperate for the right diagnosis, each time hoping that will be the final answer so we can get to the business of getting well. I have been on the doctor/specialist/no real answer Merry-Go-Round for three years. People not in our situaiton do not understand how it can chip away at your very soul, with each non-complete diagnosis. But to address your question, I had vertigo for three months and feel several times and hurt my back. After several visits to the Rheumatologist (I have RA), an ENT and a neurologist, I took it upon myself to see a balance doctor. He diagnosed me with ear cystals and sent me to PT. It took a couple of sessions before I saw results but after about the third visit the ear crystal problem seemed to be resolved. I continued PT to retrain my balance. Although the room wasn't spinning my balance was very poor. It did improve to some degree but not enough to keep me from having to walk with a cane. I am now seeing a chiropractor who is more of a full body, healing from within kind of chiropractor who uses gentle manipulation as opposed to cracking bones. I have had more success with her than any of the other doctors I saw. Once she got my hip and spine back into place (woefully out of whack due to all of my falls) my muscles are starting to shift back into the right spot. I would start PT and see if your body reacts well to it. If you only have to address the vertigo then you will probably have good success. You should know after a couple of visits if it's going to do what you need.
I told him ,I'm not getting caught up in that route , it's not solving the problem , I did say that he must think I'm mad if he thinks that I'm the sort of person who at the moment , cant do the job I love , cant look after my granddaughters on my own , have given up working in the charity shop , as I'm not save , have got to hang on to my husband when I go out , have spent a fortune on glasses , I really thought I was going to loose it in there , I felt so angry
Good for you!! they need to be told and get a dose of reality. I had a run in with my GP this week which I won't bore you with details on as its so convoluted! bUt when i got though to her after talking to the secretary she said 'oh my secretary said you were angry', and I said 'yes I am' and as she already knew what had preceded this it shouldn't have been a surprise! trouble,s you have to box clever with them in these situations as they can write all sorts down on your notes. Happened to a lady I know, who's very forthright (no rude), had a peek at her notes when th dr was out the room, and was shocked to,see this dr had written that she was something like (Forget actual words) she was nasty, rude etc etc. so she took it up (Later) with the head of practice and complained
Page froze....again!!! She managed to get it taken off her records as that can be damaging down the Line. I get the Impression that there are a lot,of doctors now who,do no like being challenged!!
Just going to throw out 2 other issues that maybe it could be. Vertical Heterophia which is an eye condition and you could also look into an issue with your SCM Muscle whcih is in your neck. Google both and good luck.
Unfortunately, most of us know all too well about being passed from doctor to doctor and differing diagnosis. The truth is, they actually have no clue what causes the issues that we experience. They know what their speciality says about the symptoms that we describe but, having never experienced it they cannot relate to fully understand what we are telling them that the symptoms are. Also, in todays medical world it is about treating things with a pill and moving on to the next patient. If you, the doctor, cannot figure it out it must be caused from anxiety or migranes.
Most of us that have experienced this condition have done enough research looking for an answer that we should be qualified to have a medical degree. We are willing to try anything and the truth is there are so many conditions of the inner ear and brain that display several of the same symptoms. It's hard to tell if what we may be doing to treat ourselves is having any impact or not. I have found that it takes several weeks if not months to begin to see any impact from the things that I have tried. I began looking for a quick fix and found myself frustrated when it didn't happen. I found that the best case was to do several things in hopes that it was the right choices and then to stay a course. While I am not completely recovered I find myself around 95% recovered for the most part. I live in dread that this may return as some others have stated. I had a similar incident 15 or so years ago but, it resolved itself in 6 or 7 weeks. This current bout has been going on for 22 months.
There is an interesting article on a website for tampabayhearing. If you type that into Google and when you get to their site type in vestibular neuritis, there is an article there by Loren J Bartels, dated 09/17/2013. It should be the first one to come up after you search. It sheds a lot of light on the condition and why some of us suffer for long periods of time with it. It also discusses the reactivation of the herpes virus causing relapses and long term treatment for some with anti-virals. Was a good read for me and a lot of information that really related to some of our stories.
Best of luck to us all as we battle together. This forum seems to be to only hope that we have to share something that can make a difference. The medical community is so large and so diverse that we are lost in the void of all other ailments.
Right on Terry! Very thing you say is,bang on. We just have to keep researching and sharing that with each other. Will be checking out tampabayhearing site for are. Thanks
Thank you Terry, I'll look that website up tomorrow. Interesting that you mentionr if the shingles vaccine I got 2 months before my dizziness started had anything to do with it (I know the vertigo/BPPV) did not. He said "No, definitley not!" I think it might have, since it's a live virus in the shot. Guess I will ask my other doctor when I see him again - in late-spring. And found out yesterday it isn't neuritis, but neuropathy in my inner ear. Still trying to find where online it said that was reversible. I saw it once. Sigh...
Thanks. I did look it up a few weeks ago and this definitely is not me, according to the symptoms (except for the feeling of being off-balance and veering to the left all the time). Yesterday, though, I did get a definite diagnosis of palinopsia. That is an eye condition where you keep seeing a light streak when a bright light anywhere in your field of vision, such as a traffic light at night, as you look away from/across it. Kind of like a camera setting that is on a speed that is too slow. It's mild-moderate, but that proves something's going on with my eyes or brain, not totally the vestibular nerve. At least SOMEthing definite, and may lead to a correct diagnosis for the disequalibrium. Good luck to us all.