Hi!
I was reading your post to Jtiegs and was wondering about your exercises. I have been doing a variety of exercises for about 2 1/2 months and I can say that they definitely have helped. I feel like I should have been doing more visual exercises. My balance therapist that I am seeing has been focusing more on my balance. I have just started doing more exercises with my eyes back and forth and focusing.
What I wondering about is, none of the exercises have actually made me feel really bad or dizzy. It does seem like my main struggle right now is with my eyes. I can not focus directly on something when I look back and forth at it. There is a hesitation. Now that I am focusing my eyes more and making them focus, that makes me feel more dizzy. Is that a good sign and an indication that I should be doing them?
Also, at this point, how do the exercises make you feel and what are your initial symptoms presently?
I am having neck tension, head fullness, different and new environments make me feel "weird". I was in a restaurant that I haven't been to since I got dizzy and it was hard to sit thru the meal. Just felt this pressure in my head and felt like someone was pushing my head forward.
Anyway, since we are real close in the time we have been doing the exercises I am very interested in knowing where you are right now physically.
I also have developed TMJ which I know causes alot of stuff. Also, have been having problems when I go to bed with my head feeling really full, like when you stand on your head. And then feeling my body rocking with my pulse. I have been taking a very low dosage of lorazepam the last few nights and it seems to be helping. The neck tension has been a little better and don't feel like I am swaying near as much when I walk.
How do you feel about medicine? Have you taken anything. I have really stayed off of medication for the most part, but this neck tension got so severe it was causing terrible blood pressure in my head. Felt like the lorazepam was a must. Just praying I will not take it too much or too long!
This thing is so crazy always having to do my own diagnosing!
Well, enough for now!
Would really appreciate your input and any thoughts.
Thanks!
Vicki

Hi there,

Yes, we have been doing the VRT for around the same amount of time, but before I describe my state now I do think it's important to remember that I've been ill 15 months. I do think that time plus VRT can also play a part. I had probably compensated a fair amount before even starting them. This doesn't mean to say you won't compensate much, much more quickly, especially as you have started the exercises sooner than I did - this makes a difference to recovery time.

It's difficult to say exactly where I'm at, as I seem to be at a potential crossroads. I was doing well at about week 10 and 11 of VRT, then got flu which set me back massively and took about two weeks out of my VRT regime. I got back on it as soon as I could and once again I seem to be back to where I was in those 2 weeks before I got flu - which is generally a little off, a slight sensation of vision/something not being quite right - this is most of the time but bearable - a total party and joy compared to the first awful 8 months. I am currently able to do a lot more without this sensation becoming worse, my stamina is up, at times I forget I'm ill. I sometimes still get vertigo, rarely visual spinning, but rather a feeling of motion in my body, particularly when going from walking to sitting or lying. I also get the head being pushed forward or pulled upwards sensations that you describe. These are also very common with VN. This is generally less violent that when I first got vertigo, weirdly in my case 8 months in to this ordeal when some of the other symptoms were improving. For me in the first 8 months and now when things get bad - my worst symptoms are visual - at worst I devolve into a total foggy headed state, I feel like I'm looking through cellophane or have a goldfish bowl on my head, I have problems focusing on a whole area, my depth of field is completely off, often I become slightly hyperacoustic as well as feeling like my neck/face/ears are tight- I sometimes feel like my hearing is diminished but all my hearing tests have been fine. This got extremely bad again after the flu but seems to be under control again now. These visual type of symptoms, like you, come on more strongly in environments with a lot of visual stimulus - the neurotologist explained to me that this is visual vertigo - your eyes take over the job of balancing you - this is a sort of default mechanism, your body fighting to stay upright. It is provoked by busy visual environments and is very common with vestibular nerve damage. To get rid of it your brain has to learn to relate to the balance nerve that's damaged and not rely on your eyes - hence special exercises for the eyes.

Every specialist has a slightly different regime they recommend - the department I go to recommends finishing the balance exercises first, then moving on to the eye exercises. You asked about the balance exercises. For me the balance exercises provoke very little immediate change - I find them tedious but easy to complete - occasionally a slight, slight sensation of visual weirdness, although I noticed very early on that after starting a new exercise I would get much dizzier a few hours or a day later and it would often stay this way for a couple of days, before I moved on. This is one of the reasons I have wondered about my diagnosis - considered it might all be down to say, migraine or tmj, BUT the fact is I am improving with them, and although the neuro oto couldn't explain why they didn't make me feel bad as I did them, the fact that they're seemingly helping is enough reason to continue. Also the fact that I can time a worsening of my symptoms with starting a new exercise also indicates they are doing something. So to answer your question about the eye exercises - yes, generally if they provoke worse symptoms you are on the right track.

Medication - at one time due to the tmj I got stapedial muscular spasm - a violent vibration in my ears - it was such an awful symptom I used small doses of valium as a muscle relaxant, which would control it. I haven't had to use valium for months. Lorazepam will help a stiff, hurting neck, but you are stuck between a rock and a hard place as it's a benzo, which sedates the balance nerve and slows down compensation. I spoke to the neuro oto about this, he said very occasional use of benzos shouldn't hold things up - regular use would. There are other drugs for musclular/neck problems which don't affect compensation - tricyclic anti depressants being a common one - like amitriptyline - you could ask your doc about that, although they can have side effects. Jen and Scant both take tricyclics for neck/headaches. I tried nortiptyline, similiar to ami, but reacted very badly to it so came off it. Another thing you can do for musclular probs with tmj is take magnesium and calcium in combo, these are known to be a natural muscle relaxant and can be very beneficial - other supplements commonly used are MSM, reduces inflammation and aids in joint and tissue repair and glucosamine and chondrotin, which help to stenghten joints, ligaments and tendons. For best effects the Magnesium and calcium should be about twice a day with food, one of those times before bed. Other than that you should stretch your neck every day - Miza wrote an excellent list of her stretch exercises recently, if you put her name in search you should find them.

I got lazy about taking supplements but have just started taking the above again as I have read enough to convince me that they can really help. I am also taking my own advice and stretching every day, and, as you know, I continue with my VRT. I have no idea if this improved stretch will hold up - I can only hope.

Hope this helps,

best,

hbep.

Thanks, Hbep!
That is alot of helpful information!
I have been thinking alot today about my condition and kind of pondering when I got my ear virus 9 years ago. You have probably read my story many times now. But what gets me is that I fully compensated after about a year, but I did not have any ups and downs and did not have any other symptoms come on except unbalance for a short time and then the weird sensation from going in to large stores like Walmart. The thing is I didn't do any balance exercises. Had no clue that I needed to. I was pregnant at the time and couldn't do normal housework for several weeks. Also, we were in the process of putting in air conditioning in our home and it was in July so I spent DAYS in our camper in the air conditioning basically doing nothing but reading during that time that I was dizzy.
The thing was is I absolutely had no medication for my virus because of my pregnancy. I just can't help but feel like the medication hinders alot more than we realize.
Also, I guess, maybe with getting BPPV, because I already had ear damage it just is alot more severe and harder for my brain to compensate.
For 4 nights I took .25 mg. of Lorazepam and the adult dosage is actually 6 mg. I absolutely hate falling back on the medication. Do you think that much for that long will be alright?
Also, have you been to a neuro-opthamolgist? I am going to go see one next week. I am hoping that maybe he can help me with my vision problems some more cause my glasses have given me fits since I got them. I did get a new prescription about 3 months before the vertigo hit and the balance therapist said that makes the new glasses a suspect in this.
I really don't know anything about supplements. I have not idea what form to take them in or how much. I just take extra calcium every day and was taking an Active ONE-A-DAY vitamin. I quit taking the vitamin cause it just seemed to make me feel worse (probably in my head!)
Well, I hope you get back to feeling great! I bet you will be surprised to how fast you come along! The balance therapist from Chicago said that if we get right back to the exercises it does go alot faster!
Also, another question!
How did you respond to this disorder at the beginning? What medicine did you take and did you tend to stay in and down or did you try to stay active? and for how long?
When I got this in July I stayed active doing everything I always did even tho' I was struggling with dizzyness. I even went 1000 miles away pulling a camper for 2 weeks and had a fairly nice time (ups and downs physically, but made it!). After two days straight of sitting in the van and traveling home, I got really bad!
Then I just went DOWN. Protecting myself from movement. Was sure the wrong thing to do, but didn't know better. I was also on meclizine for about a month because of my personal doctors prescription. There are alot of things I would have done different if I knew then what I know now!
Ok, I am done!
Thanks for writing back!
Hope you are having a really good day!
Blessings!
Vicki

Hello there,

In terms of the meds - the way my neuro oto explained it, drugs that sedate the balance system will slow you down, not completely stop you compensating, although if someone took benzos all the time they could be in for a very long haul. Four days of lorazepam would probably just slow things down for the period of time you're taking them and maybe a day or two after, but once it's out of your system it won't make any difference. In short, if you are in a lot of pain and need the meds, then you simply have to weigh things up. For me, in terms of the period of time when I took valium, the symptom I was experiencing was so awful that I just didn't care if it slowed me down fractionally - I had to treat the other symptom. I worked on a needs must basis - only ever resorting to them if I the symptom was very bad.

In terms of what I did at the beginning of this - for the first few months I took no meds at all. The valium was something I took in response to a new symptom 8 months in. I work at home at a computer and managed - I have no idea how now, to complete a job. I then took a number of months off as it was all too exhausting. Having said that I did keep going out all the time - obviously I would often get dizzy and exhausted and come home again, but I did keep active. Sometimes keeping active, on a very bad day, would only consist of sorting out some old papers and letters, or forcing myself to read, reading was very, very tough for me in the first few months. Basically I think the theory is little and often - keep active but don't over do it. I actually directly asked the neuro oto about this - and that was his response - he said people who rehabilitate in that way, not totally overdoing it, tend to fair better - he said otherwise the symptoms can become too overwhelming. Your camping trip was probably just too much for your brain to handle at that stage, whereas, for example, a day trip to a park, walking around and pushing yourself a bit, wouldn't be. You need to push to the point of giving your brain new info/visual stimulus/activity to work with, but not so much that you become so ill you get despondent and overwhelmed. It isn't bad to feel dizzier after being active, this tends to mean your brain is trying to work things out, but obviously to feel utterly dreadful will merely make you hesitant to do stuff again. Sometimes you will feel dreadful whatever you do, happens and has happened to us all - the key is not to panic, just to keep going - 6-7 months is not that long to have this, relatively speaking. Often time will also play a large part in the compensation process.

Regarding my eyes - I have a straightforward eyesight problem - short sight, one eye worse than the other. A few months ago I got my prescription changed, my eyes had worsened. I chose contact lenses as I figured they would be easier adapt to - no frame/glass for my brain to contend with. It was pretty tough to adjust to them - hard for a regular person - even harder for someone with vestibular damage. It took a few weeks but I got through the other side - I attribute my improvement to getting my eyesight fixed and the VRT.

I do think the key with this stuff is to keep going, it's unrelenting, you'll want to tear your hair out at times, but most people get there eventually. It's just very, very slow.

Hope this helps,

best,

hbep.

Thanks, Hbep!
It all comes down to just keep keepin on! The bad days come, but it does help knowing the better days will come back again! For the most part, I am not having really bad days now. Just this dreaded neck tension and a little imbalanced. I am a stay-at-home mom and I have to make myself get out and go. But I always feel better when I do. It helps alot emotionally! My hardest part of the day is late evening. I am just worn down and I always have a little dread of going to bed cause it takes a little bit to get relaxed and asleep because of the slight rocking. But overall, I know I am getting better, mostly because it is not consuming my thoughts ALL the time like before and I don't have the anxiety for the most part anymore. I also don't have nausea most of the time. And I find myself singing around the house and kind of dancing around the house to the music I listen to. Before, when I was worse, it was hard to smile about anything!
Sometimes I think I am just getting used to my condition, but I know it just feels that way cause it is so SLOWWWWW!
Keep us up on your improvement! You, subs and the others who are either there or almost there are SUCH an encouragement!
It is funny how we cope. Cause back when I began to realize that this could be a LONG ordeal, I thought, no way!!!!
Here I am about ready to hit the 5 month mark tomorrow. And I have made it so far!!! (Thank the Lord!)
Thanks again, Hbep!
I will probably think of more questions!
Also, my eye problem is that they are opposite. One eye is blurry close and the other blurry far away. Don't know what the neuro-optomologist can do but his nurse said he can help me find things that a regular eye doctor can't. I am trying not to be nervous about the appointment next week.
Well, have a great day!
Blessings!
Vicki

Hi Hbep

Glad to see you are coming back to battery--so to speak.


..."the neurotologist explained to me that this is visual vertigo - your eyes take over the job of balancing you - this is a sort of default mechanism, your body fighting to stay upright. It is provoked by busy visual environments and is very common with vestibular nerve damage. To get rid of it your brain has to learn to relate to the balance nerve that's damaged and not rely on your eyes - hence special exercises for the eyes."...

Well said---that should be "chipped in stone" and posted/mounted where ever---dizzy people wonder!!

:cool: