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Old 01-03-2007, 06:12 PM   #1
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alwayshotroddin HB User
BPPV or something else? I would like to hear your stories!

Hi everyone,

You may recognize my name from other threads and posts. I was originally diagnosed with BPPV a little over a month ago. I have only had one vertigo attack that lasted about 12 hours. Other than that I constantly feel "tipsy" and "out of it" when I walk around as if I might fall over but I never do. My ENT doctor thought I had BPPV, did an Epley Manuever, gave me Meclizine and told me it should go away with time. The problem is I still have these symptoms (I've had them for about 2 months now) and nothing is getting better.

I've had lots of blood work done... I originally had a TSH level of 5.6 and that was believed to be causing the problems but then recently it went back down to 1.7. My electrolyte counts and blood sugar are normal. I was advised to take my blood pressure at home resting and standing a various times and also when I feel the most dizzy. Yesterday I had a short dizzy spell where I had to grab the wall to prevent from falling over, but only lasted a few seconds. A few minutes later I took my blood pressure and it was 99/66 (which is low for me - I usually have a BP of 115/75) and this number may have risen because I waited a few minutes to take my BP.

I am curious to know if anyone else out there that has been diagnosed with BPPV has not really had any vertigo spells but rather just feels "tipsy" or in "disequilibrium" all of the time? My ENT's diagnosis doesn't add up since I've only had one vertigo spell and my symptoms aren't getting better. I also have had stomach problems recently... mainly bad acid reflux, nausea, and diarrhea possibly from a stomach bug or possibly from something else?

I'm having more blood work done next week to see if my other hormone levels are off base, such as estrogen, progesterone, LH, and FSH hormones.

I also have noticed at night that I have a slight buzzing or ringing in my ears... kind of like how you feel after you leave a concert. My first thought was Meniere's but I had a hearing test done and I have perfect hearing. I also had an MRI and everything was normal other than some sinus problems.

Very frusterating as you can imagine! I'm sick of feeling "not normal" and now suffer anxiety for whatever reason. I would be willing to accept I just have BPPV but my dad has had this in the past and the only symptoms he had were 3 vertigo spells about 1 month apart and after his vertigo he would go back to feeling normal whereas I constantly feel funny.

Maybe I should see a neurologist?

Okay, sorry for the long post! I would love to hear any of your BPPV experiences and how you felt and dealt with it! Thanks!

 
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Old 02-07-2007, 03:24 PM   #2
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Re: BPPV or something else? I would like to hear your stories!

Hi there. I have been dx with Bppv. I do not get the spins, but I feel like I am light headed, and that sometimes I am spacey. Like things are going on and I am not part of it.
Usually worst in the morning, and good at night. Unless I am standing on my feet for too long, then the feelings come back. Sometimes when I am in the shower, and close my eyes, it feels like someone is trying to push me over.
I get anxiety with this as well. Pit in my stomach, and a sense of dread, nervousness. I think that this is brought on by worrying what the day has to offer - I really do not like the spacey feeling, and it makes me upset.
Sometimes when I wake up in the morning, I feel jittery. And sometimes during the day, I might remble a bit.
My neck gets stiff from time to time. The neurologist gave me a couple of exersises to do, and they seem to help. Smoking makes the sensations worst.
The neurologist gave me a prescription for Ativan, as this helps to de sensitize the inner ear and does make it feel better.

My family doctor says that I am just suffering from anxiety only, but I do not believe it. For example, I can be feeling good, and then lean or something while I am sitting, and then the symptoms will come.

Do these sound familiar to you.

And to anyone else, do they sound familiar to you...

Looking forward to your responses.

Thanks,
Gary

 
Old 02-10-2007, 09:46 PM   #3
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Smile Re: BPPV or something else? I would like to hear your stories!

beau1954.....I feel the same way you do. The first time it happened to me I felt more lightheaded than anything then after a few min my heart rate went up, bad pressure in my stomach, left arm got cold. I freaked out! I felt it again a few days later. After a week I went to the doc and they said I had resp. infection. I delt with them for about another week, had another one thought I was dying, went to the er and they said I have bvp and was having panic attacks. I felt like I had real bad sinus pressure, doc said that is tension migranes, I am on meclizine and havnt really felt any attacks for about 4 days but my head has been in a fog from the tension. I really didn't feel like I had bpv because I never really feel dizzy I fell lightheaded, spacy,week,have had neck pain more on the left side with stiffness, and off balance, I close my eyes and they jump around and i feel like i am being pushed forward or to the side. I have had 3 docs tell me it is bpv but I was still worried it could be something else.I had a Ct and two ekg and both where fine. I cant have a mri because I have rods in my back. The ER doc gave me ativan but I am scaired to take it (i don't like new meds). I go on thursday for vestibular testing so I have to stop taking the meclizine. I should trust the diagnosis since i have had 3 doc say the same thing, I sat around for three days and cried because it was messing with me so much. I could not even go to work because I felt so sick. Now that i have read how you all feel it makes me more relaxed because you are experiencing the same symptoms. Good luck to all!

Last edited by peanut925; 02-10-2007 at 09:56 PM. Reason: add to it

 
Old 02-12-2007, 01:56 PM   #4
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Re: BPPV or something else? I would like to hear your stories!

I am sorry to hear about your episodes, but at the same time glad to hear that someone has the same symptoms as me....
It is supportive to know what the heck is going on. I as well doubted the BPPv thing, as everything that I have read lead me to believe that if you have BPPV, then you get the spins.
This is not the case for me. I just get very spacey, and lightheaded. Further to what I posted before, I become very anxious/nervous, etc. when my head is feeling bad. My stomach gets quite upset in the morning, and later at night if I get tired. And I do tire easily, more so than ever before. What seemed to be small tasks before, are sometimes huge tasks now.

My doctor at first thought that I was only suffering from anxiety. Even though I have not been in to see the ENT yet (waiting for the appoint) I did get a chance to talk with the doctor, who told me that anxiety can run high when you have an inner ear thing going on, as messages going from the ear to the brain are all jumbled up, causing in some cases great amount of anxiety and panic.

Are you doing exersises to relieve the symptoms. I am and it really does help. This doctor also suggested that I take ativan, as what it does is desensitizes the nerves in the ear, which will help with the symptoms. So I started taking Ativan (I was nervous too, for the same reasons as you) and they have really helped. Takes away the spaciness, and helps with the associated anxiety.

Gary

 
Old 02-13-2007, 04:09 PM   #5
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centaur1201 HB User
Re: BPPV or something else? I would like to hear your stories!

I have noticed a very strong connection between BPPV and anxiety. I have suffered for the last 5 months, and it was not until recently that I started feeling better. I have been doing the Modified Epley Procedure (MEP) at least once a day for the past week, and sleeping as upright as possible at night as well as not trying to look up or bend over during the day. I have been feeling 100% better. I am hoping that this is not a phase, but a real step toward healing. However, I know that having the room tilt and slide away is a terrifying experience especially when you do nothing to provoke it (i.e. just walking, sitting watching tv, brushing your teeth, etc...)naturally our bodies respond with a fear response, weather we want it to our not. Our bodies sympathetic nervous sytem reacts with the flight or fight reaction. The stress of having your environment becoming suddenly unstable causes a lot of adrenalin to shoot into your bloodstream too quickly. Infact anyone can experience a panic attack by having adrenalin injected via a needle into their veins. Some of the symptoms of a panic attack are: heart palpatations, weakness and exhaustion, dizziness,"jelly knees", missed heartbeats, blurred vision, an illusion of walking on shifting groung, a sense of isolation and unreality and an urge to escape and find saftey.
Soooo....as you can see, if you are suffering from an inner ear disorder, the panic you experience only makes matters worse. You CAN do some things for yourself to help quell the panicky side of things. First: BREATH. Three things happen when you start to panic: 1) your body tenses 2) your mind begins to race, and 3) your breathing is quick and shallow. So in panic situations it is very important to begin to take deep SLOOOOW, discontinuous breaths from your stomach. Try engaging in repetitive, constuctive, positive thinking. Don't add fuel to your panic by thinking words like "OH NO! Here comes those awful feelings again! I can't stand it! I'm trapped - out of control!" Sound familiar? And sure enough you feet trapped,afraid and out of control, NOT because of the situation but because of the words you were telling yourself. if you "de-awfulize" episodes of severe stress, then the panic subsides and the panic monster is beheaded! Believe me, it works. You can do it! Just believing in your own power over panic is your most powerful wepon in overcomming it! I would also strongly advise doing the MEP moves three times a day until you are 24 hours free of BPPV symptoms. I, unfortunately could only do it once a day because of my job. However, a week later I feel so much better. At first I was very nervous about doing the MEP, because I did not want to get dizzy. But I realized that it would pass , after doing it a couple of times,and this really helped bolster my confidence and helped with the anxiety issue. Today when I did the MEP I did not get dizzy at all when I laid back! So hang in there! There is hope, just be patient and kind with yourself! Hope this was helpful. Good luck!!!!!

 
Old 02-13-2007, 04:19 PM   #6
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beau1954 HB User
Re: BPPV or something else? I would like to hear your stories!

Hey thanks, the doctor kept telling me that I had anxiety that was bring on the symptoms, but I kept on telling him that it was the symptoms that was bringing on the anxiety. It was not until I seen a neurologist that it was determined that I had BPPV.
I want not entirely sold on the idea that I had BPPV, as I was lead to believe that when you have BPPV, you get the spins. I have had a couple of minor spins, but mostly head fog and what feels like dizziness, but I am not sure anymore. But what I have found out as of late, you can have BPPV and not have the spins.
When you total up all the symptoms that I have, and what can bring them on, I am pretty much convinced that I have some kind of inner ear thing going on. I have noticed that when I do the exersises, it does help, but I have been at it for a couple of months, with some progress, but not as much as I would like.

I find that when my head starts to feel bad, I get anxious, not the other way around. Hopefully when I get in to see the ENT, we will get things speeded up abit.

Have a good one,
Gary

 
Old 02-13-2007, 04:43 PM   #7
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centaur1201 HB User
Re: BPPV or something else? I would like to hear your stories!

Beau1954-
You're welcome. Dr's are great for somethings, but not so good for others. Nobody knows your own body better than yourself! (Ummm, lived in it for 37+ years, hello!) It's insulting when you KNOW something and are being told something that you know is'nt right. OK so they have a degree, but still you are you, right, and you know what your body is doing every day because you live in it. Trust yourself and take care! Hope you feel better soon!
From what I've read everybody is different when it comes to getting those stupid crystals around and out of the area they're not supposed to be in. Keep at it!

 
Old 02-17-2007, 05:52 PM   #8
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peanut925 HB User
Re: BPPV or something else? I would like to hear your stories!

my ENT did dizzy test and said I do have bpv and the did that positional thing to correct the bpv, but have tension migranes (my doc said that is what is causing my spacy, head congested, blurred vision thing) So I can't tell if the bpv is better or not due to what they are saying are headaches. They did not give me any exercises to do at home. I need to get rid of the headaches then I will be able to tell if I am better or not. I am still very anxious and scaired to go anywhere even work due to the fear of having one of those spells.

Last edited by peanut925; 02-17-2007 at 05:53 PM.

 
Old 02-21-2007, 10:25 AM   #9
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Re: BPPV or something else? I would like to hear your stories!

I have had a somewhat similar experience. I had one episode of vertigo about 18 months ago. I turned over in bed and the room spun around for about 10 seconds. I previously had a bout of vertigo about a year earlier but it went away and so I figured this would as well. The difference was that when I got out of bed -- unlike the time before -- this time I continued to feel dizzy or slightly "off." I immediately started doing research and determined that I probably had BPPV so I started doing some of the CRP exercises. I haven't had any further episodes of vertigo since, but I still continue to feel dizzy and slightly off balance. It has been 18 months now and I've had all of the standard tests done (blood, VNG, MRI, etc.) and everything came back normal. I find that when I drive or am concentrating on something I don't notice the dizziness. But when I am sitting at the computer or watching TV I tend to notice it more. I've gone to three ENTs and they all seem to think that I originally had BPPV, but now that's gone and they don't really know what's going on. Anyone else had persistent dizziness after the BPPV went away? And if so, what if anything are you doing about it?

 
Old 02-21-2007, 10:53 AM   #10
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Re: BPPV or something else? I would like to hear your stories!

Good morning. The neurologist told me that I had BPPV. But I have to admit, he did not do many tests to determine this dx. He had me stand with my eyes closed and head tilted back, and he also had me do the finger to nose test with eyes closed. After only this, he said that I had BPPV and referred me to an ENT. I have just never been satifisfed with this, and a little doubtful to say the least. But, he is a neurlogist, and who am I to doubt him. My appointment with the ENT is not until July!!!
So I took the bull by the horns, and went to see a physio therapist who specializes in vestibular disorders, and more specifically BPPV. She did all of the tests, the manouvers, the epley, did the sitting up in bed for two days, etc.... went back and seen her, did more tests, and so on. That is what I was looking for from the neurologist. She, and I believe her more than the neurologists, is not thinking BPPV. She then took the time to go over more symptoms, when they occur, etc. She asked me a series of questions, which made me recall certain events that normally I would not have thought of.

The effects of recent air travel. If my ear or ears ever get plugged. Ear pain. History. If the rubbing of the back of my head and areas that feel congested help in any way.

Long story short, she is inclined to think that my problems are related to a prolonged sinus infection/build up of pressure in the middle ear - eustachian tube blackage.

She advsied that this can cause head fog, nervousness, anxiety, dizziness, upset stomach, vision problems, consentration problems, etc. etc.... I told her that when I do the home edition of the epley manouver, this sometimes helps the symptoms, which confused the matter a bit, but after she did some research, she determined that by merely doing some rolling around and head tilts, this may in fact be releasing some of the build up pressure in the ear...

Interesting, to say the least. And no, my doctor has never checked or explored the sinus infection thing, that will last basically for ever if not treated, even though he knows that I have a history of acute sinus infections that occur from time to time....

Just my thought for the day
Gary

 
Old 07-23-2008, 06:15 AM   #11
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Re: BPPV or something else? I would like to hear your stories!

Quote:
Originally Posted by alwayshotroddin View Post
Hi everyone,

You may recognize my name from other threads and posts. I was originally diagnosed with BPPV a little over a month ago. I have only had one vertigo attack that lasted about 12 hours. Other than that I constantly feel "tipsy" and "out of it" when I walk around as if I might fall over but I never do. My ENT doctor thought I had BPPV, did an Epley Manuever, gave me Meclizine and told me it should go away with time. The problem is I still have these symptoms (I've had them for about 2 months now) and nothing is getting better.

I've had lots of blood work done... I originally had a TSH level of 5.6 and that was believed to be causing the problems but then recently it went back down to 1.7. My electrolyte counts and blood sugar are normal. I was advised to take my blood pressure at home resting and standing a various times and also when I feel the most dizzy. Yesterday I had a short dizzy spell where I had to grab the wall to prevent from falling over, but only lasted a few seconds. A few minutes later I took my blood pressure and it was 99/66 (which is low for me - I usually have a BP of 115/75) and this number may have risen because I waited a few minutes to take my BP.

I am curious to know if anyone else out there that has been diagnosed with BPPV has not really had any vertigo spells but rather just feels "tipsy" or in "disequilibrium" all of the time? My ENT's diagnosis doesn't add up since I've only had one vertigo spell and my symptoms aren't getting better. I also have had stomach problems recently... mainly bad acid reflux, nausea, and diarrhea possibly from a stomach bug or possibly from something else?

I'm having more blood work done next week to see if my other hormone levels are off base, such as estrogen, progesterone, LH, and FSH hormones.

I also have noticed at night that I have a slight buzzing or ringing in my ears... kind of like how you feel after you leave a concert. My first thought was Meniere's but I had a hearing test done and I have perfect hearing. I also had an MRI and everything was normal other than some sinus problems.

Very frusterating as you can imagine! I'm sick of feeling "not normal" and now suffer anxiety for whatever reason. I would be willing to accept I just have BPPV but my dad has had this in the past and the only symptoms he had were 3 vertigo spells about 1 month apart and after his vertigo he would go back to feeling normal whereas I constantly feel funny.

Maybe I should see a neurologist?

Okay, sorry for the long post! I would love to hear any of your BPPV experiences and how you felt and dealt with it! Thanks!

 
Old 07-23-2008, 06:22 AM   #12
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devaneym HB User
Re: BPPV or something else? I would like to hear your stories!

i was diagnosed with bppv about a week ago. I had an episode in feb-08 (woke up with room spinning) and had a number of tests done and the Dr attributed the problem to my low resting pulse (i exercise a lot). I recently was experiencing lightheadedness and looked on the internet and discovered bppv and thought that sounds like what i am experiencing. I went to an ent dr and hence the positive diagnosis. Mostly I experience lightheadedness and seem just not myself. I am doing a series of exercises 2X per day. It is likely that I am going to see a vestibular therapist who will work directly with me.

 
Old 07-24-2008, 05:50 AM   #13
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Re: BPPV or something else? I would like to hear your stories!

I had BPPV back in December. I had to have several Epleys, not just one before I got better. I am still off and still have anxiety. I will be going back for more VRT shortly. I stopped for a few months, but definitely need more.

I think for me the anxiety it caused is making my whole body feel horrible. I even get internal shaking ( perhaps hormonal, not sure) and a whole host of symptoms.


My brother had a dizzy spell with vertigo for about a week, was given medicine and is fine with no other symptoms, shows we are all different and get different things as well

Last edited by Sillyme03; 07-24-2008 at 05:51 AM.

 
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