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Old 02-26-2012, 07:55 PM   #76
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Re: Bilateral hypofunction

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I haven't been on the bike lately due ice on roads..gravel..the usual winter stuff. Looking forward to spring! . I see no reason why you won't be able to snowboard again, and yes, BC has some great ski resorts.

Cheers
Manybikes, Uga,

I have noticed a bit of stiffness and light numbness in my left arm + leg (which is the same side as in the injured ear). It's particularly worse at night.

Just wondering if you had any of these symptoms - getting a bit scared here

Hope you are all well!

Gregory

 
Old 02-26-2012, 08:57 PM   #77
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Re: Bilateral hypofunction

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Originally Posted by greggaway View Post
Manybikes, Uga,

I have noticed a bit of stiffness and light numbness in my left arm + leg (which is the same side as in the injured ear). It's particularly worse at night.

Just wondering if you had any of these symptoms - getting a bit scared here

Hope you are all well!

Gregory
Hi Greg:

I do get a slight pain in my left leg occasionally but I have no idea if it is related to my inner ear disorder. I also had pain in my left arm but it turned out to be a slight case of arthritis.
Never experienced any numbness.
Consult with your Doctor about your symptoms.
Don't blame you for getting spooked, I know I certainly was when I first started having inner ear problems, initially I didn't want to even go to the Doctor because I was convinced that every symptom was a sign of something much more dire.
Our condition can sometimes play havoc with our emotions (like we need more problems!
Go to your Doctor and have it checked out Greg...stay calm...you'll be okay.

 
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Old 02-27-2012, 02:29 PM   #78
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Re: Bilateral hypofunction

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Originally Posted by greggaway View Post
Manybikes, Uga,

I have noticed a bit of stiffness and light numbness in my left arm + leg (which is the same side as in the injured ear). It's particularly worse at night.

Just wondering if you had any of these symptoms - getting a bit scared here

Hope you are all well!

Gregory
Hi Greg,

How are you doing now? Sorry to hear you were having a bad day last week. I could not help commenting on your last post, because I felt something very similar last year, seemed like my left side was sometimes numb and even with a tingling sensation.. I went to the doctor and in my case it seemed like it was anxiety related..I do remember it was a very stressful time then, I was also suffering from panic attacks, so it made sense..anyway, it did go away, so I do believe it was stress. But like Manybikes said, do check it out with your doctor.

When will you hear more in detail about the results from your balance tests?
I will be doing an MRI scan early in April to find out if there is more to my vertigo attacks...not looking forward to it

It would be great if you could try the BP. It took me a while to find one because as you probably know Wicab, its manufacturer, stopped doing the trials with the device and also stopped selling it. I tried to contact their office in the US to find out if I could still get hold of one, but unfortunately never got a reply from them. But luckily I managed to get a reply from Wicab here in the Netherlands (actually their representative) and they were the ones who were able to help me.

 
Old 02-27-2012, 06:54 PM   #79
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Re: Bilateral hypofunction

I used to get tingly sensations in my ears and down my body as well. It could be vestibular migraine which have been known to do this. Remember migraine is more than a headache.

Vestibular migraine effects the ears and vestibular system as well as the eyes!

Hang in here Greg! It will get better, mine did not get better until all function was lost in both ears!

 
Old 02-29-2012, 02:23 PM   #80
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Re: Bilateral hypofunction

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I used to get tingly sensations in my ears and down my body as well. It could be vestibular migraine which have been known to do this. Remember migraine is more than a headache.

Vestibular migraine effects the ears and vestibular system as well as the eyes!

Hang in here Greg! It will get better, mine did not get better until all function was lost in both ears!
Uga, I was curious about what you said on your last post about the tingly sensations being connected to vestibular migraine... One of my ENT doctors told me that apart from the BLV I could also be suffering from Migraine Associated Vertigo (or vestibular Migraine), but it was hard to tell because the symptoms from both disorders seem to overlap... Do you also suffer from Vestibular migraine? And if so, have you taken any medication for it?

 
Old 02-29-2012, 06:20 PM   #81
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Re: Bilateral hypofunction

Dizzyme:

Yes I was diagnosed with vestibular migraine and my dr thinks that could have been causing my vertigo--- I used to get vertigo for hours and even days for about a year before loosing all function. My dr gave me verapamil and amtriptyline for he vestibular migraine. Not together but alternated between them.

From my understanding vestibular migraines can cause vestibular problems, eye problems and even hearing loss.

My loss is idiopathic/ no known cause but probably either viral or vestibular migraine.
I got a lot of headaches as a child then hey stopped and I just started getting dizzy without the headache.

Having trouble with different lighting, grocery stores, wal marts ect.... could be a sign of vestibular migraine.

 
Old 03-08-2012, 06:21 PM   #82
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Re: Bilateral hypofunction

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Dizzyme:

Yes I was diagnosed with vestibular migraine and my dr thinks that could have been causing my vertigo--- I used to get vertigo for hours and even days for about a year before loosing all function. My dr gave me verapamil and amtriptyline for he vestibular migraine. Not together but alternated between them.

From my understanding vestibular migraines can cause vestibular problems, eye problems and even hearing loss.

My loss is idiopathic/ no known cause but probably either viral or vestibular migraine.
I got a lot of headaches as a child then hey stopped and I just started getting dizzy without the headache.

Having trouble with different lighting, grocery stores, wal marts ect.... could be a sign of vestibular migraine.

Hi Uga, one of my ENT doctors also suggested I could be suffering from MAV, but since most of the symptoms overlap with the ones from BVL, he said it was difficult to make a clear diagnosis..I tried Nortriptyline and this anti seizure medication I cannot remember the name of, but none of them had any effect.. so did the medication work for you?
I am doing an MRI scan in April to see if there is anything else related to the vertigo episodes..personally, and from what I have read, I think they are related to the fact that I am probably having more vestibular damage, but we will see..but I am feeling a bit anxious about doing the test and what might come out of it...
I do have a lot of trouble with lighting, from the grocery stores type of lighting, to even computer screens, but I think that is also common with BVL, isnt it?

 
Old 04-15-2012, 12:18 PM   #83
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Re: Bilateral hypofunction

I think the ultimate question is if you have ears that are sending bad or distorted signals to the brain is someone better off without that signal and thus the faulty vestibular system. We actually have 3 balance systems and when one fails the other two take over.

I think once the war signal is gone than the eyes, brain and feet/ proprioception take over the job once performed by the ears.

Maybe someone will weigh in on this---- I know Menieres disease and migraine can both damage ones vestibular apparatus.

 
Old 04-15-2012, 01:02 PM   #84
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Re: Bilateral hypofunction

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Originally Posted by uga View Post
I think the ultimate question is if you have ears that are sending bad or distorted signals to the brain is someone better off without that signal and thus the faulty vestibular system. We actually have 3 balance systems and when one fails the other two take over.

I think once the war signal is gone than the eyes, brain and feet/ proprioception take over the job once performed by the ears.

Maybe someone will weigh in on this---- I know Menieres disease and migraine can both damage ones vestibular apparatus.
Hi Uga,
yes, I agree with you. From all I have read from other people's experiences, seems like I would be better off with zero function on both ears than having these distorted signals instead.. I talked to several doctors about it and they just disagree with me, insisting that it is better to have 30 per cent left on just one, than zero on both..so I guess I will have to wait and see how it all develops. I might ask the doctors again to try some different medication for MAV (tried some before, but with no results). I had never heard that the vestibular loss could also be caused by migraine, very interesting to hear that. Are you still improving and feeling better and better every day?

 
Old 04-20-2012, 05:45 PM   #85
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Re: Bilateral hypofunction

Manybikes:

Do you ever worry about getting older and not having the strength (le muscles) to give you the support and stability you have now.

My biggest worry is getting older and falling and suffering a serious injury. I guess I it got to that I could always use an electric chair to do the work of my legs.

Did you fall a lot during your first few years?

Do you have any reading on eng test or are both of your ears dead as nails. Like somebody who had both balance nerves cut? I am assuming you have no reading on balance testing?

 
Old 04-21-2012, 08:12 AM   #86
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Re: Bilateral hypofunction

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Manybikes:

Do you ever worry about getting older and not having the strength (le muscles) to give you the support and stability you have now.

My biggest worry is getting older and falling and suffering a serious injury. I guess I it got to that I could always use an electric chair to do the work of my legs.

Did you fall a lot during your first few years?

Do you have any reading on eng test or are both of your ears dead as nails. Like somebody who had both balance nerves cut? I am assuming you have no reading on balance testing?
Hi Uga

Yes, I do worry about that. I am 56 years old now and I often wonder what I will be like 10 years from now. I exercise on a regular basis to keep fit. I more or less have to take it one day at a time, and I am always grateful for everyday that I am able to function like a normal person.
No, I did not really fall much in the first few years...I learned very quickly to try and avoid situations where a bad fall could happen.
I did have a few minor falls but nothing serious.
My ENG tests show no reactions at all on either side...gone...kaput..zero.

Stay active and stay fit UGA, I work part time at a local golf course as a greens cutter, the pay sucks but I do it for the exercise. The green cutting machine is a walk behind kind of device. In a typical morning I end up walking close to three miles and having to cut straight lines on the greens...excellent therapy. I also bicycle and work out in a gym.
Do I worry about the future..only sometimes. I always keep the faith that they will find some kind of cure for us.

How are you doing?

 
Old 06-25-2012, 07:50 PM   #87
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Re: Bilateral hypofunction

Manybikes: thanks my friend!

I am doing ok, hanging in there, driving in traffic on highways is scary, hopefully it will come.

Let me ask you a question:

Do you still get disoriented/imbalanced in busy places still? Crowds and commotion still seem to do a number on me?

Do you remember how long it took to get over the relentless fatigue? I guess the brain is working overtime to keep us upright and balanced!

I know I gotta keep moving, pushing and staying fit, but sitting down sure does help and makes me feel better----I guess it's because it's less fatiguing since I have the seat of my pants for balance and eyes when sitting down? Do you feel better sitting or standing after all these years?

Thanks my friend, your help and thoughts are always appreciated!

 
Old 06-25-2012, 10:21 PM   #88
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Re: Bilateral hypofunction

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Manybikes: thanks my friend!

I am doing ok, hanging in there, driving in traffic on highways is scary, hopefully it will come.

Let me ask you a question:

Do you still get disoriented/imbalanced in busy places still? Crowds and commotion still seem to do a number on me?

Do you remember how long it took to get over the relentless fatigue? I guess the brain is working overtime to keep us upright and balanced!

I know I gotta keep moving, pushing and staying fit, but sitting down sure does help and makes me feel better----I guess it's because it's less fatiguing since I have the seat of my pants for balance and eyes when sitting down? Do you feel better sitting or standing after all these years?

Thanks my friend, your help and thoughts are always appreciated!
Hi Uga

Good to hear from you!
I really don't get terribly disoriented in busy places. I can handle crowds just fine now. For example, I can walk around in a crowded fairground at night with no difficulty (with a beer in my hand
I sometimes wonder if it is because I have simply forgotten what normal feels like.
Nothing wrong with sitting down and taking a rest Ugo.
I am now in my sixth year of living with BVF. I know that each year when I look back it is only then that I realize what progress I have made in various ways.
I know that the first 3 years were the worst, this is when I was fatigued a lot of the time just like you.
I still do get tired but I am noticing that I now seem to have the same energy level and stamina that normal people my age seem to have.

I really don't think much about driving anymore, it has become very routine for me.
I know I have said this many times but....it is a long frustrating process, it has taken me six years to get where I am now. I will still fumble a bit while walking in darkness but most people just think I am a bit clumsy.
I can't remember Uga , how long has it been since you went bilateral?

 
Old 07-29-2012, 12:27 PM   #89
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Re: Bilateral hypofunction

Many bikes:
thanks my friend--- it is going on 2 years since I lost all function. You are soooo very right suscess and improvement can only be measured in months and years, not days and weeks.

Let me ask you a question, I know that you now chair water ski? But do you always wear a lifejacket in the lake, even if it is just swimming around a dock or boat or do you feel safe enough to swim without a lifejacket.

My next goal is to get back in the water, even of it is just floating around with a life jacket or a foam tube!

How is it driving a boat on the water without a vestibular system? A little worried about that as well? I love to ocean Kayak and want to get back to it as well, but use safety!

I took my kids to the amusement park and had to use a scooter to get around--- just not there yet with the hills and crowds and commotion. I felt bad but at least I went and had fun and took precautions for my safety.

Hills, slopes and such give me some worries but making it. I guess it takes the body, brain and muscles years to adapt.

It is amazing you can ride a motorcycle in traffic on busy streets---- you are my inspiration.

Thanks my friend for your thoughts and inspirational story.

uga

 
Old 07-29-2012, 02:18 PM   #90
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Re: Bilateral hypofunction

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Many bikes:
thanks my friend--- it is going on 2 years since I lost all function. You are soooo very right suscess and improvement can only be measured in months and years, not days and weeks.

Let me ask you a question, I know that you now chair water ski? But do you always wear a lifejacket in the lake, even if it is just swimming around a dock or boat or do you feel safe enough to swim without a lifejacket.

My next goal is to get back in the water, even of it is just floating around with a life jacket or a foam tube!

How is it driving a boat on the water without a vestibular system? A little worried about that as well? I love to ocean Kayak and want to get back to it as well, but use safety!

I took my kids to the amusement park and had to use a scooter to get around--- just not there yet with the hills and crowds and commotion. I felt bad but at least I went and had fun and took precautions for my safety.

Hills, slopes and such give me some worries but making it. I guess it takes the body, brain and muscles years to adapt.

It is amazing you can ride a motorcycle in traffic on busy streets---- you are my inspiration.

Thanks my friend for your thoughts and inspirational story.

uga
Hey Uga

Good to hear from you my friend!
Funny you should mention the Air Chair. I just got back from a week vacation at the lake. Yes, I did use the Air Chair, had a lot of fun. The strange thing is, I am about the only one in my family/friends that has figured out how to use it. I have no problem getting out of the water on it and I can zig zag back and forth across the boat wake...I still have the occasion crash..I bruised a few ribs when I took a sideways header into the water when I was at the chairs full height.
I also went tubing and tried wake surfing for the first time. It took a few tries to get up and get balanced but I was able to do it.
Yes, I always wear a life vest when doing water sports, make sure you get the type that will automatically roll you on your back if you take a nasty fall. I did have one fall off the wake surfer where I did get temporarily disoriented under the water...you have to remember to keep your cool and open your eyes if that happens.
I will go swimming without a life vest but you always have to be well aware of your surroundings, in general it does not bother me much but I can see where swimming in big waves could be an issue. Take it one step at a time, first try swimming in a small pool and see how it feels, remember that swimming in a pool and swimming at a lake are different. In a lake you can be far away from shore, the water is murky etc. Always play it safe if in doubt.

I know what you mean about slopes and hills. I was in my third year and went to Disneyland in California. There was a long steep escalator that we had to ride. I had to hang on for dear life. Now I can ride an escalator up and down without hanging on to the rails.
Crowds and commotion are real hard to get used to, I can spend the day at a Fair Grounds and am okay with it, but it does tend to tire me out a bit more than just normal walking around. But the important part is that you had a day of fun with your kids..there are many who would give anything just to get out for a day like that, I am always thankful for everything I can do.
I guess it makes you appreciate life more...I try to enjoy every minute.

I think Kayaking would be just fine, always wear a life vest and I would choose a larger Kayak that is not prone to tipping or flipping over easily. The best way is to also always go with a buddy who understands your condition and will keep an eye on you and help if necessary.

Cheers

Last edited by manybikes; 08-13-2012 at 12:55 PM.

 
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