Well after all my kvetching I finally got a decent caring response today from someone I didn't expect.

On Friday I put in a last ditch call to my neuro otologist (whom I had a good experience with on the first visit, and a disappointing experience with on my follow up.) I was hoping to consult with SOMEONE about my condition and newly developing symptoms before leaving town for a month, my first opinion is on my discard list, the second was this guy, and my third opinion referral was in limbo. Anyway, he called me back today, and was quite open to discussing my situation.

So, I explained to him the situation and discussed my
latest symptoms. He asked me to describe them further (wow, no one asked me to do that) so I did. He said he feels confident that my ears are "acting
up" but he isn't certain exactly what's the cause. He said he feels from everything I have said that it's definitely my ears. I guess he must not have been completely convinced before. Anyway, he told me to do a low-salt diet (icky) and take the Klonopin every day. This is the same as he prescribed before, but I challenged him on the compensation issue and taking Klonopin. I also asked him about Meniere's and he said at this point it's not quite fitting, but it could still end up that way. He said the pattern isn't completely consistent with Meniere's so he still isn't willing to go there yet. He asked whether I had done the diuretics (which I had, with unpleasant effects) so he didn't think I should go back on at this point. All of this is sort of repeat, but what he said about the compensation was that it isn't really an issue in my case. He said it's an issue when someone has a dramatic sudden balance upset. Not a drawn out episode. He said basically that what I have read isn't true for a case like mine and that there will be no measurable loss from taking the Klonopin daily (side note: this is the second doctor to tell me this, but I have no confidence in the other doc, so I blew it off). The reassuring thing that he said is in most of these cases like this, the ears act up for a period of time and that eventually they get straight again (I keep hearing that..). He asked me again to trust him on the Klonopin (2.5 mg 2xs a day) and use it to get through this rough time. He told me to call him again when I get back from my trip (wow, more interest in my condition! Where did that come from?).

Now I know some of this is stuff he already told me, but I found his compensation explanation new and interesting. I forwarded this info on to a doctor I know and trust (family) and he said he thinks I should try what this guy is telling me.

What are my fellow dizzies thinking about all of this?
Thanks,
Julianne

Hi Julianne, wow, I hope Subs has some thoughts on this. I don't know. But I do think its worth a try. At this point, I would try ANYTHING to stop this crap. From what I have read, thats a very low dose--so who knows. Am praying for you. If you decide to try it--please let me know what happens. I have heard from 3 people that Dr. Hain has put them on Klonopin.One it has stopped her symptoms, the other 2--don't know yet. I am so glad you found a doc that took the time to listen, thats rare...Prayers, Belle

Hi Julianne, wow, I hope Subs has some thoughts on this. I don't know. But I do think its worth a try. At this point, I would try ANYTHING to stop this crap. From what I have read, thats a very low dose--so who knows. Am praying for you. If you decide to try it--please let me know what happens. I have heard from 3 people that Dr. Hain has put them on Klonopin.One it has stopped her symptoms, the other 2--don't know yet. I am so glad you found a doc that took the time to listen, thats rare...Prayers, Belle

Hi Belle, Yes, I too would like to hear from some of our "resident experts" on the boards to hear their opinions. We've all done our research, but it's nice to check each other.

I don't know if this was a fluke, or if this guy is going to work out. The biggest obstacle is that he's an hour and a half drive away. But if he's willing to check up with me on the phone so I don't have to make that drive, I am pretty happy with that solution. I took the Klonopin last night (which I had done many times when my sleep is disturbed anyway), and with my fingers crossed this morning I popped another half of a pill and muttered under my breath.."Ok, I'm trusting you buddy!" So we'll see. Either I will spend the morning half asleep, or I will have some decent results. How are you feeling anyway?
take care,
Julianne

Hi Belle, Yes, I too would like to hear from some of our "resident experts" on the boards to hear their opinions. We've all done our research, but it's nice to check each other.

I don't know if this was a fluke, or if this guy is going to work out. The biggest obstacle is that he's an hour and a half drive away. But if he's willing to check up with me on the phone so I don't have to make that drive, I am pretty happy with that solution. I took the Klonopin last night (which I had done many times when my sleep is disturbed anyway), and with my fingers crossed this morning I popped another half of a pill and muttered under my breath.."Ok, I'm trusting you buddy!" So we'll see. Either I will spend the morning half asleep, or I will have some decent results. How are you feeling anyway?
take care,
Julianne

Hey, Julianne!
Well, I am back. Had a wonderful visit with the balance center. Got some good news for you! Jim, the head therapist, and the founder of the balance center of chicago, took care of me personally. He found that I have no permanent damage in my ear. I am basically having to return my brain back to "normal" after being messed up with BPPV (which the cause of that is unknown). Anyway, with the exercises he gave me and he is putting me on Klonopin, also, he says he will be totally shocked if I am not back to normal in 6-8 weeks! I asked him about taking medicine and he said it is not necessarily true for everyone and sometimes medication can actually speed recovery. He told me that the Klonopin will help take that loopy feeling away that I experience when I am in restaurants or shopping malls. He is having me take only half of what you are taking cause I have gotten quite a bit better and doesn't think I need the full dose.
They were wonderful there and took all the time I needed to tell them my symptoms the last 7 months. Then took all the time they needed to explain what is going on in my brain. I also saw a Dr. Allen, who was impressive. He was very thorough and dictated a letter for me to keep to give to future doctors explaining my condition completely. He said it will help me deal with those doctors who want to tell you "it is all in your head".
Anyway, I am very thankful to the Lord for leading me to Chicago and I am looking forward to "normal" days again. I KNOW they are coming soon. I was able to do ALOT in Chicago. It has gotten alot better for me doing things and being out and about. I am at about 85-95% all of the time now.
Well, thought it would be helpful to let you know about the Klonopin. I was surprised about it, but I completely trust these people!
So glad you got someone to listen. That is such a relief!
Hope you are doing better and hope the Klonopin really helps.
Did he mention anything about therapy? The balance center is very strong about that being the way back to health.
Take care!
Vicki

HI Vicki,PRAISE GOD, I am SO very happy for you. Now you can just settle on getting 100% and leave all the worries behind...As I too have the dx of BPPV--will you tell me what your symptoms have been. I have been doing the vrt for 5 months now. You may remember, the blood pressure med sent me reeling backwards. Now the worst thing is I feel like I am falling down because my head is too heavy to stay up--if that makes any sense. Sometimes, I still get the room spinning when I get up. The boat feelings are getting milder AGAIN, but are still here--24/7. Just trying to see how we compare.What vrt did they tell you to do? Anyways, Vicki, I just Praise God, you have the answers.Please let me know how you doing with it.
Hi Julianne, 1 1/2 hrs away is a long drive but as you said, if he will do most of it on the phone--that will be wonderful. And now Vicki has been told the same thing--give the med a try and we will pray--it works!!! Prayers, Belle

Hi, Belle!
The symptoms that I am having now, basically, are just a full, pressure feeling I get in my head when I am reading (at times, can read most of the time without much problems), in a busy shopping environment, a busy, loud restaurant. I still have a heavy head, not nearly as bad as before. But, one of the main things for me is that I am not spinning. I think that there would have been some other major things done for me if spinning was still an issue. I can't say what they might tell you, since you are still experiencing that. But, they certainly seem to know what they are doing, but they should cause dizzy disorders is all they do. It was such a blessing to be with people who really understand the disorders. I am very thankful for the trip. It was 7 1/2 hours away but worth every minute of the drive. Besides the fact that Chicago is an absolutely beautiful city that was breathtaking at night along the edge of Lake Michigan and the city lights. WOW! We are planning on taking our boys there sometime soon when I am better.
I still also have some fullness in my ears and am sensitive to sounds.
The exercises I am doing are basically all about my vision. Using a pen and moving my eyes in different movements. They discovered that my right eye overshoots somewhat to the right when I change my vision. Jim said that is what is making me still feel imbalanced and dizzy, which makes sense cause I am doing that constantly thru the day, overshooting and then correcting, overshooting and then correcting. It is so slight that I don't even notice it except when I try to change my vision and my eyes jump past the object when I look to the right.
Try finding two objects to focus on to your right and to your left. Focus on one and then quickly try to look at the other and do that several times. Do your eyes go right to the objects (make sure they are fairly small) or do they go past?
I wish they had a clinic near Oklahoma. This balance center has locations in Chicago and then Nevada and California which isn't near Oklahoma. You can be helped in one visit and then they have you get a physical therapist where you live that they tell what to do to work with you. I don't have to go back at this point. Anyway, it was worth the trip!
Hope this helps. If I think of anything else I will let you know. Getting ready to take my 5 year old to KC to get his arm X-rayed that he broke. Busy!!!
Blessings!
Vicki
Also, thank you Belle and Julianne for your prayers!!!!!

HI VIcki and Belle,
Wow, sometimes I think these things come together for a reason. Here you are one day later being told to take the Klonopin too! I was told months ago, but I didn't want to. But after this latest conversation with my doc, I decided it was really worth trying. I wonder if God has us both being told the same thing for a reason???

This is day two on the Klonopin around the clock. I have one conflicting issue that I can't tell if it's from the meds or just happening at the same time. I have a terrible pressure headache in my frontal lobe, and it's been going on from the night before I started the drugs until now (2 days plus a night, on and off). Surprisingly I didn't fall asleep yesterday with the drugs in my system. I would say that there is some supression of the symptoms, but they don't make me feel normal by a long shot. And by evening, I guess once it wore off, I was back to my usual swaying self. So, since I didn't fall asleep, that being one of my biggest complaints, I will continue to give it a trial. I am taking half a tab (2.5 mg), but when I split the pill, I take the slightly smaller half during the day.

There is something dopey about me that I don't care for, but maybe once I adjust to the meds that will stop. I mean, when I reread my typing, I have so many more errors than normal, and I have more trouble keeping my thoughts straight on this drug. So, there's give and take. I figure I'll take it for a week or maybe the month and decide if it's worth the trade off. I can say one thing with certainty, if I can stop that horrible morning sickeness malaise feeling I get on some days, it's worth it. I can almost deal with the dizzies better than that. (In my second pregnancy I was so sick to my stomach I lost 7 lbs in the beginning and had to be put on medication to stop the nausea, and it didn't help either, so I HATE that feeling)

I haven't had VRT proposed to me yet. I always forget to ask. I will ask him when I call after my trip. I also still have that neurologist appointment so maybe he will have some thoughts on the subject as well.

One scary thing I heard from a relative who is highly involved in helping drug addicts and alcoholics recover is that she is dealing with a woman who just got out of detox from taking Klonopin. This isn't the first time I have heard that it's addictive. I just hope that for us, the dosage is low enough, and we are taking it for a real problem, not just getting "high" or "low" is more like it. I assume it's like morphine in that when you take it and you have pain, it works properly. If you don't have pain you can become addicted. Have you are anyone else heard any more about this?

Ok, got to start our school day. It's getting later and later. I guess that's ok since my husband is gone right now. I am just so tired and can't seem to wake up in the morning. The kids get to watch some PBS shows on my bed while I lay with a pillow over my head. Nice picture huh? It works for now I guess. This tiredness comes in waves, but this has been a long one.

Take care,
Julianne

Hi Vicki, thanks for the info. I wish there was a good balance center here tooo!!! I tried the eye deal you said and going to my right, there seems to be a delay. My head gets there and then my eyes. On the left side--it does good. So, you don't get the motion--just the heavy head. Did they have any clue as to why our heads feel so heavy? Good Luck with your son. Belle

I forgot to ask, Vicki, can you describe your fullness? I have developed some and I posted, but no one replied. I was wondering about the actual sensation. I have the full feeling of pressure, but I can "pop" my ears. However the sensation doesn't go away. It's not the same as when you have a cold and you get that ear congestion and you can pinch your nose and sometimes it pops and sometimes it doesn't. Mine pops, but the sensation is still there. Does that make sense? What are you experiencing?
Juliann

I forgot to ask, Vicki, can you describe your fullness? I have developed some and I posted, but no one replied. I was wondering about the actual sensation. I have the full feeling of pressure, but I can "pop" my ears. However the sensation doesn't go away. It's not the same as when you have a cold and you get that ear congestion and you can pinch your nose and sometimes it pops and sometimes it doesn't. Mine pops, but the sensation is still there. Does that make sense? What are you experiencing?
Juliann

Hi, Julianne!
There is just a sense of pressure in my head. It is not always in the same place. Sometimes it is on the side, around my nose, up the side of my neck and into my head. It becomes very strong when I am in a challenging environment that has alot of busy decor or alot of people or noise, etc. Sometimes I experience the fullness or pressure when I begin to read a newspaper. I am not an ear popper so I don't know about that, but the fullness is probably more described as pressure in the head. It feels to me like my brain is at war and fighting with the visual stimulus around me.
Also, when I am feeling the pressure, if I place pressure with my fingers somewhere on my head the pressure increases.
Hope this helps!
Vicki

Hi Vicki, thanks for the info. I wish there was a good balance center here tooo!!! I tried the eye deal you said and going to my right, there seems to be a delay. My head gets there and then my eyes. On the left side--it does good. So, you don't get the motion--just the heavy head. Did they have any clue as to why our heads feel so heavy? Good Luck with your son. Belle

Hi, Belle!
The heavy head is just typical of the imbalance going on in the brain. There is conflicting messages being sent to where your head is actually supposed to be and basically a battle going on with the nerve messages and the balance. Which causes terrible neck problems after time cause the neck muscles just get plain worn out.

One of the things that is SO important is to move your head as freely as possible. One of the things that occur with the dizzy disorders is the tendency to guard movement and we don't move our heads normal. Which is very difficult when you are dizzy or your neck is a stiff as mine!
But guarding movement is a BIG hindrance to healing and compensating and I was told that people who do not move their heads normal will have sometimes impossible healing and recovery.

I would guess that since you are still spinning you still need the BPPV exercises like the Brandt-Dorff and such.

Hope this helps Belle!

Vicki

Hi, Julianne!
There is just a sense of pressure in my head. It is not always in the same place. Sometimes it is on the side, around my nose, up the side of my neck and into my head. It becomes very strong when I am in a challenging environment that has alot of busy decor or alot of people or noise, etc. Sometimes I experience the fullness or pressure when I begin to read a newspaper. I am not an ear popper so I don't know about that, but the fullness is probably more described as pressure in the head. It feels to me like my brain is at war and fighting with the visual stimulus around me.
Also, when I am feeling the pressure, if I place pressure with my fingers somewhere on my head the pressure increases.
Hope this helps!
Vicki

Hmmm, not sure if that's the same as what I am feeling or not. I have major terrible pressure headaches at times. But this ear pressure is more recent. It's like I am in a pressure chamber or something I guess. But my ears aren't "stuck" as in that trapped feeling I get when there is snot in there that won't clear out. But I keep feeling like "popping" my ears over and over, but although the act is possible, and easy, it doesn't remove the sensation. Maybe someone else is familiar with this. Anyone???
Thanks,
Julianne

Hi Vicki, thanks. I couldn't figure a reasonable answer out about why my head was so heavy! I guess I will try the brandt-daroff again. Did you do them? Mine were to sit on sofa--lay down on right side--head tilted like your looking at someones head--6 ft away--wait 30seconds--then sit up--wait 30 sec--then left side. Repeat 5 times--twicew a day--is that how you were told to do it? Thanks, Belle

Hmmm, not sure if that's the same as what I am feeling or not. I have major terrible pressure headaches at times. But this ear pressure is more recent. It's like I am in a pressure chamber or something I guess. But my ears aren't "stuck" as in that trapped feeling I get when there is snot in there that won't clear out. But I keep feeling like "popping" my ears over and over, but although the act is possible, and easy, it doesn't remove the sensation. Maybe someone else is familiar with this. Anyone???
Thanks,
Julianne

Hi!

I also have pressure in my ears. Right now I am experiencing pressure in my right ear and it feels like it would if I was driving quickly up a mountain. I am not sure what makes it come on. It started up as I was driving down the highway coming home tonite.
Vicki

Wow Vicki, are you able to drive now? I go up and down but with my husband gone right now I have to if I need to go out. However, I really limit what I do. Some days it's really ok, but somedays I feel like I shouldn't be doing it.

This was day 2 on the Klonopin. I started to think about some issues I need to address with the doctor. How long can one be on this drug? That's a big one. What if this thing drags out for a few more years? Am I going to be taking this stuff that long? Doesn't the body develop a tolerance and have to have increased dosages to get any effect? What about physical addiction and withdrawal. I hate to worry, I want to just "trust", but it occured to me that I should ask about this stuff.

As far as effects of the drugs today, I felt less symptoms, but it's sort of odd. It's almost like they are being masked, but they are still there, and as soon as the meds wear off, I feel them full force again. Right now I have to take another one, I am really screwy. And I got a little spooked in the car today. I just did a short errand, and when I got in the car I felt ok to drive. Once I was moving I felt uneasy, sort of swaying and rocking a bit in my head. It was almost like the Klonopin was blurring my judgement on whether or not I was ok to drive. Usually I can make the call before I get in the car. I wasn't sleepy, it was really odd, hard to describe. You'll have to tell me if you experience the same feelings. I will give this all more time. Maybe I just have to settle in. There was a point in the day where I thought...."yeehaa! Klonopin! How could I have been so stubborn? I feel clearer than I have in a while", but it was fleeting. And I must add that my symptoms have been pretty heavy for the past month or so with maybe two days of 80%, and every other day under 50%.

Another side note, sometimes it seems that there really hasn't been any major improvement at all since the beginning of this in June. The difference is that I am becoming more indifferent. I have almost forgotten what it feels like to be normal, and I settle for crumbs on a better day. I mean, maybe I am adapting, but not necessarily healing or compensating. Anyone else sensing that?
Hope you all are having a less dizzy day.
Julianne

Hi Vicki, thanks. I couldn't figure a reasonable answer out about why my head was so heavy! I guess I will try the brandt-daroff again. Did you do them? Mine were to sit on sofa--lay down on right side--head tilted like your looking at someones head--6 ft away--wait 30seconds--then sit up--wait 30 sec--then left side. Repeat 5 times--twicew a day--is that how you were told to do it? Thanks, Belle

Hi, Belle!

I sit and then look to the left and then quickly lay down on my right side. My head is tilted as if someone 6 foot tall is standing by the bed and I am looking at their face. For 30 seconds and then sit up looking straight ahead 30 seconds and then repeat on the left side.

The PT at Chicago also has me do log rolls where you lay flat and then roll to the right and to the left as quickly as possible for a minute. She said that is good for BPPV.

I am going to look over the booklet they gave me and will let you know if there is anything in it that would help!

Vicki

Hi Vicki, did you see my post--HELP? I did them last night and my goodness.My left side is my bad side--when I layed to the left the room did spin but when I sat up--things across the room looked like they were jumping up and down.And the motion got worse when I quit. I could only handle 3 times. Now this morning, when I woke up--tried to sit up--room did spin--I waited then got up--room started spinning again!! I am scared. Head movements are AGAIN bad. Do you think I did something wrong doing the B-D? Thanks for your help, thats how I did them. Belle

Today stunk. I took the Klonopin this morning and I felt just freaky all day. I can't really describe it, sort of like when you are just cresting the top of a roller coaster I guess, but that doesn't really do it justice. I wonder if this drug is masking some of my symptoms but not all??? I didn't feel like I could drive at all, I did a short errand but it felt sketchy at best. Just being at the store got me all heated and fatigued. I can't say that today was any better on the meds, it was almost worse. Hmmm, is there an adjustment period or something? I have taken it before on bad days and it seemed to ease things a bit, but I always ended up going to sleep shortly after taking it.

Oh boy, I sure would like to hear from anyone who has been on this or some other similar drug for an extended period. Is it worth it?

Julianne

Hi Julianne, am so sorry your having such trouble on the med. I can't help on that, I've never taken anything other than the meclizine in the first 3 months. Can you call the pharmist(sp) and ask them? Hope you get to feeling better. Hmmm,so the doc said panic attack--well i was thinking oh no, another spin--so maybe so. I hope it never happens again....Belle

Hi Julianne, am so sorry your having such trouble on the med. I can't help on that, I've never taken anything other than the meclizine in the first 3 months. Can you call the pharmist(sp) and ask them? Hope you get to feeling better. Hmmm,so the doc said panic attack--well i was thinking oh no, another spin--so maybe so. I hope it never happens again....Belle
Apparently you don't have to be feeling anxious to have one of these panic attacks, it's more subcontious. I think my body was like, "whoa, let's freak out!" and I had no idea what to make of it. The Klonopin is supposed to help with that too, but I haven't really had a big one in a while, just little ones, like I am about to have one, but it subsides. It's almost like anxiety I guess.

I took meclizine when I was having initial trouble, how in the heck did you manage for three months. The stuff they gave me made me borderline comatose. I really couldn't do a thing. I was absolutely wasted. This Klonopin is more subtle, but the vertict isn't in on whether it's good or bad in my book.

Hope you are doing ok today.
Julianne

Hi Julianne, the meclizine didn't phase me, and usually any med will konk me out. I was sure hoping it would make me sleepy, as I was getting about 3 hrs sleep.It did help the sick feeling but not the dizzys. Of course, back then I had no idea what was happening. As soon as I got into see the ENT,3 months down the road, he told me to stop taking them. I do hope and pray the klonopin helps you. I was wondering, if after a week, if your still feeling the same, try half a pill and see if thats better?? Thank you, this morning does seem better. The spinning was very brief when I got up and I feel better. Doing the B-D last night, the sensations were not as severe. I do wonder if maybe last time--they did not help and this time they are. It has to be doing something to mess with my eyes so much. I have prayed and ask the Lord to put His hand on this and get me well. I am at a point, where I have got to find a job and I know all this stress doesn't help, its a never ending battle. Please pray, I know God can turn everything around and what was meant for evil--He can turn to good.Prayers, Belle

Hi Julianne, the meclizine didn't phase me, and usually any med will konk me out. I was sure hoping it would make me sleepy, as I was getting about 3 hrs sleep.It did help the sick feeling but not the dizzys. Of course, back then I had no idea what was happening. As soon as I got into see the ENT,3 months down the road, he told me to stop taking them. I do hope and pray the klonopin helps you. I was wondering, if after a week, if your still feeling the same, try half a pill and see if thats better?? Thank you, this morning does seem better. The spinning was very brief when I got up and I feel better. Doing the B-D last night, the sensations were not as severe. I do wonder if maybe last time--they did not help and this time they are. It has to be doing something to mess with my eyes so much. I have prayed and ask the Lord to put His hand on this and get me well. I am at a point, where I have got to find a job and I know all this stress doesn't help, its a never ending battle. Please pray, I know God can turn everything around and what was meant for evil--He can turn to good.Prayers, Belle

There seem to be two different forms of Meclizine, one that available over the counter which I took and it didn't make the sleepy, and the one I was prescribed at the hospital when I had shocking violent vertigo. That one make me completely incapacitated. Yes, it stopped the vertigo, but there was a huge trade off. And when I took it for the general disequillibrium, it did nothing to help me, it just made me need to sleep. Either that's the case, or my pharmacist put the wrong drugs in my bottle and gave me heavy sleeping pills! Today is day 3 on the Klonopin, day 3 and counting. It seems not too bad so far. Things are screwy, but they don't seem as freaky as the last two days. I will continue to pray for you and for Vicki. We will get through this mess, it's just biding out time and making the best of things until we are free. Talk to you soon.
Julianne

Hi, Ladies!
Sounds like both of you are having a really hard time! Belle, I think you need someone to see you about these spinning attacks. Would you consider calling one of the balance centers and just asking them their advice. That is what I did. They are very good to help you and it is really a relief just to talk to someone who understands.

Julianne, one of the doctors that I saw wanted to put me on full dose of Klonopin, but the head PT said just half a dose. If I was going to be on the full dosage they are going to send me a prescription for another drug that sounds like it is needed to help balance the Klonopin. I am thinking they said Ritalin??? But, not sure. I am supposed to be getting all the paper work soon from the Center and will let you know what it was.

I am doing very well. Am feeling very normal these days. Ran on the treadmill yesterday for the first time in months. Couldn't do near as much as I had, but it was a beginning! It feels SO good to feel normal. I want this for you both SO much! You are so much on my heart!

I am going to sound like a broken record but the balance centers are their for you two. When I told Jim, the founder and head therapist how much I appreciated him taking the time with me on the phone, even before he knew I was going to come to Chicago, he told me, "That is what we are here for." They really care about helping us dizzy folks getting well again!

Anyway, you are both in my prayers!

Vicki

Hi Julianne and Vicki, am glad your doing better Julianne. How weird, the meclizine I took was presribed too. Mercy and I was taking it every 4 hours, like they told me too. Maybe, I was so stressed out that it couldn't make me sleepy!!!
Vicki, am so happy you are doing so good.Praise God. Thanks and will they talk to me if I can't go there? How do I get their number? I would gladly talk to anyone that actually knows about this mess. It has got to be the BPPV acting up again, I only spin on my left side. Even doing the B-D, the right side--no room spinning--left side--room goes. The audiologist said the B-D are known to give some very weird visual symptoms and spinning or things jumping were quite normal if the exercises were helping. So WHY months ago,in month 4, when I was doing them and nothing happened--no spinning, jumping, nothing--did she have me keep doing them???? I am so praying this is it and I will be free of this mess. Thanks and prayers, Belle

Hi Julianne and Vicki, am glad your doing better Julianne. How weird, the meclizine I took was presribed too. Mercy and I was taking it every 4 hours, like they told me too. Maybe, I was so stressed out that it couldn't make me sleepy!!!
Vicki, am so happy you are doing so good.Praise God. Thanks and will they talk to me if I can't go there? How do I get their number? I would gladly talk to anyone that actually knows about this mess. It has got to be the BPPV acting up again, I only spin on my left side. Even doing the B-D, the right side--no room spinning--left side--room goes. The audiologist said the B-D are known to give some very weird visual symptoms and spinning or things jumping were quite normal if the exercises were helping. So WHY months ago,in month 4, when I was doing them and nothing happened--no spinning, jumping, nothing--did she have me keep doing them???? I am so praying this is it and I will be free of this mess. Thanks and prayers, Belle

Hi, Belle!

Yes! I called Chicago way back at the first of October and left a message on the answering maching that I was desperate for anyone to help me if they could and to please call me back. One of the PTs called me and honestly, I felt as tho' God had sent me an angel. I didn't have any plans to go see them at that time, I just needed some direction and she was very happy to help me as much as she could. She faxed me exercises to do with what she could gather over the phone. I talked to her maybe 4 more times and then called the founder and head of the balance center in January and that is when I decided to go. But they didn't know that until January. They are wonderful.

There are several centers and they are listed on the website balancecentersofamerica.com. Probably aren't there today but could get ahold of them Monday. They really care about us dizzy folks!!!

So sorry you are having such a hard time. My heart goes out to you Belle!!! I will be praying for you!!

Vicki

I was told the Meclizine would make me drowsy, but that was an understatement. It was absolutely intoxicating. On the other hand, I found myself having intensified side effects from every medication I took. The Scopalamine patch made my vision so blurry I couldn't read a thing, and my mouth was so dry I couldn't even taste food or chew gum because it stuck to the roof of my mouth because of the dryness. In any case, I swore I would never take it again unless I was having severe vertigo.

I was taking 25 mg, but like I said, the over the counter meclizine that's sold by Dramamine was 25 mg, but entirely different, and my doctor confirmed that, so maybe they gave you that one??? My husband has taken it for motion sickness and he doesn't really get drowsy, so it HAS to be different. Odd.

Anyway, today was a bit better overall. I wonder if the Klonopin is just settling in or what. I still have some symptoms, but it feels like a solid 70% day, which is dramatic improvement over the 40% days I have been having lately. I don't know if it's the drugs or just coincidence.

Vicki I am so glad you are feeling better. Hurray!!! And you ran on the treadmill! That's great. I have been able to do that for a while, but I hate it. That has nothing to do with the vestibular problems however! I started a diet today because my evil new scale says I gained even MORE weight. What's a person with this stinking ailment supposed to do? You have to eat or graise to keep your stomach settled, you can't exercise with any consistancy because of the elevated symptoms, it's hard to find balance...literally!

Belle, I can't imagine what to make of your symptoms. I don't have BPPV, so I can't give you anything to relate to on that. I guess if it's ear rocks essentially, if they move around or lodge in a different place in the balance canal, couldn't that cause new or more dramatic symptoms? What a mess.

I am praying for you both today. I feel like we've gained some knowledge this week, and that's worth being happy about. I think knowledge is our best defense (other than prayer of course!). If the docs only understood that they would be more compliant and talk to us, give us women what we naturally need, more discussion and talking about things ad nauseum! That's what we do! That's what gives us a sense of progress if nothing else!

Take care,
Julianne

Hey, Julianne!
I hope you keep feeling improvement. I can tell that the Klonopin makes me feel kind of draggy, but I am used to feeling that somewhat anyway. It doesn't make me sleep as solid as some of the other stuff I have taken.
I weighed the other day and have gained about 7 or 8 pounds. I am cutting down now that I am back on the treadmill, BUT blew it big time today eating way too much chocolate. The boys have some chocolate that they got for Valentine's and I made a chocolate cake with chocolate frosting with mint chips, and just plain have had too much goodies!
It isn't good for me to be gaining weight cause it just adds more stress and anxiety over this whole mess!!! I am looking forward to finding discipline again and getting my weight back to where it was, Lord willing!
I think you are right about finding out as much as we can about our condition. These boards were such a key for me finding the Balance Center. What sparked me to even call them was someone mentioning one time how the balance center was the only ones who had actually helped them. That just stayed with me. And then someone else mentioned Chicago being one of the top places in the world. Then I was in such bad shape, knowing those things, I was desperate and called Chicago.
Also, I have learned so many other things by just reading and basically "listening" to everyone's stories and kind of summing up what is working, what isn't, etc.
One of the articles that the PT at Chicago sent me back in Chicago really encouraged people with inner ear disorders to get as educated as we can. I really thank the Lord for computers. Think what it would be like without them!
Hope you keep feeling better Julianne. The side effects of the Klonopin can disappear during use.
Take care!
Vicki

Hi Vicki and Julianne, I emailed the balance center--and on monday will try calling them. Hope you both are feeling better today. The heavy head feeling isn't there today--sooo maybe!!!! Oh Vicki, you are so right--without the computer--we'd be all alone with this mess--what a nightmare....Prayers, Belle

Today was a pretty good day. I had some symptoms, but they were far less than they've been the last month. I do have another raging headache that's developing tonight. Not sure what that's all about. It seems like they are really frequent now. I will certainly mention this to the neurologist when I see him in a month. So is this the Klonopin helping me finally after an adjustment, or am I just having a better day? What a mystery. Who knows with this thing. But I am grateful to have a break regardless. I was able to do some cleaning and have a nice run, so yippie!

I hope you are doing ok today.
Julianne

Today was a pretty good day. I had some symptoms, but they were far less than they've been the last month. I do have another raging headache that's developing tonight. Not sure what that's all about. It seems like they are really frequent now. I will certainly mention this to the neurologist when I see him in a month. So is this the Klonopin helping me finally after an adjustment, or am I just having a better day? What a mystery. Who knows with this thing. But I am grateful to have a break regardless. I was able to do some cleaning and have a nice run, so yippie!

I hope you are doing ok today.
Julianne


Hey, Julianne!

So glad you are having a better day! I have had a great day! I went to church this morning and tonite. I am VERY tired and ready for bed, but church was a tremendous blessing!

I have been having a headache since I have been on the Klonopin. It is one of the side effects. It does say that the side effects probably will diminish with use, so hopefully if your headache is from the medicine it will go away.

The PT in Chicago told me that the Klonopin would help get rid of the bad feeling when I am shopping and tonite when I stopped in the store to pick up a few groceries I felt absolutely normal! :)

I hope you continue to get better. Would you like for me to type some of the eye exercises I am doing just to see if they help you. They are very simple but are absolutely making a major difference for me. I realize everyone is different with this but it might not hurt to try. Just let me know!!!

Belle, hope you are doing good and I am anxious to hear what you find out from the Balance Center. They absolutely have been amazing! I thank the Lord so much for leading me to them!!! I am nearly normal with very little symptoms.

Praying for you both!! Wish I could give you both a big hug in Christ!!!

Vicki

Hey Vicki,
I would be happy to hear about your eye exercises, I'll try anything.

I don't know if the headache is related to the klonopin or not for me. I have been having these headaches on and off before I started this regular dosage. I want to add that having the balance center prescribe klonopin for you has helped me to feel better about taking it myself. Initially I kind of felt like my doc was trying to dope me up and shut me up! But maybe not!

I can't say exactly what the drug is doing for me yet. Today was better than I have had in a month. This evening I felt the symptoms increase again, and I took another pill. I also took some tylenol for my headache and it worked, so who know what that was all about. What did your docs say about how long they want to keep you on the Klonopin? Was it indefinate? I am curious because my doc initially said 2 months, and the other day he said 3, and also just said, "to get you through this rough time" which for all I know could be years. I am just wondering what the course of this medication is. And I think the body develops a tolerance and you need to take more. What about that?

I don't think of myself as a chemically dependent type of person. I don't have an addictive personality (food notwithstanding!), but I am surrounded with it in my extended family, all recovering and actively involved in 12 step programs thank the Lord. So I am aware and concerned when it comes to using controlled substances like this. I just want to be certain I do it right so that I don't end up with some sort of physical addiction or trouble weaning off. Oh, I am getting ahead of myself I guess, but it's something to think about. Do you have any thoughts or anxiety about this? It's really the long term thing I am thinking about. For example, someone I know was prescribed Valium for sleep issues and he took it for years. He had a heck of a time weening off, had horrible insomnia, and still struggles with sleep now. I just don't want to fall into a downward spiral like that. But maybe my worry is unfounded...I don't know.

But the good news is....manageable day. So I'll take it!
Julianne