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Old 01-30-2012, 03:09 PM   #1
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Labrynthitis my experience so far

I have been reading this board quite a bit and decided at this point to post my story so far.

Late November- One random morning I end up totally dizzy (room spinning I guess?), had to sit on couch, laid down, was a scary thing. Eyes couldn't seem to focus, felt shaky, go to hospital. CT scan chest/lungs, blood tests for lyme, mono, etc etc, ekg heart, all normal. (Also went for MRI, normal, Heart doc did echo bunch of tests etc normal over next few days) Symptoms seem to fade next couple days, but a week later it was back for good. Felt light headed, sick to stomach (like sea sick), fatigue, and when I got a sore throat/cold it REALLY got bad. Fatigue was bad, legs felt like jello all the time, sleeping alot, nausea..went through a good 10-14 days where it was just tough to deal with (over the holidays)
I could function fine, but it was just a wierd sense of light headed and nausea for a couple weeks at its worst point.

Off to ENT...they did a two hearing type tests, checked for fluid, tumors, etc did a balance test, all came back ok, no red flags. ENT says its Labrynthitis, says it will get worse when youre sick (which it has) and it will "blip" until its gone for good.

January- I was a feeling a little better (still light headed,but not nearly as fatigued or sick to stomach) but ended up with a bad sinus infection, which seemed to stir up the dizzyness again (but it was still there at least minimally). That has since been taken care of, and I've had about three days of feeling pretty ok, not 100%, but much more "normal". The nausea got stirred up a little since I went to the gym for the first time 3 days ago (by the way working out back when it started was too tough, I'd end up so dizzy from the elyptical or even weights just all the motion), but it seems to be improving a lot. Total time dealing with this is about 8 weeks at this point. (but truly an annoyance for about 5-6 weeks when it seemed to really stick around)

I think my bad luck was ending up with sinus infections/ sore throat in the middle of trying to get over the labrynthitis.

I think I'm finally going to see improvement on a sustained basis.I have done a lot of reading, and what I've dealt with sounds a lot like Labs (which my ENT said), or even VN, which seem to be considered one in the same on a lot of medical websites with some small differences.

If anyone has any thoughts feel free to share.

Last edited by softball111; 01-30-2012 at 06:17 PM.

 
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Old 01-30-2012, 03:51 PM   #2
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Re: Labrynthitis my experience so far

The first attack does sound a lot like Labyrinthitis, but the fact that you had a second attack does not suggest Labyrinthitis to me. Labyrinthitis only causes one attack. If you had Labythinthitis, you should be feeling a lot better after 8 weeks. I would highly advise seeing a neurologist, be sure to ask them about MAV because that is the most common cause of dizziness and vertigo.

 
Old 01-30-2012, 04:06 PM   #3
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Re: Labrynthitis my experience so far

I have no headache at all with any of this.

Last edited by softball111; 01-30-2012 at 06:07 PM.

 
Old 01-31-2012, 05:27 AM   #4
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Re: Labrynthitis my experience so far

Any hearing loss, tinnitus?

 
Old 01-31-2012, 05:39 AM   #5
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Re: Labrynthitis my experience so far

No hearing loss that's is substantial no. I have heard the ringing in the ear a few times but it's not intense but it's been there. One thing is for sure getting sick a couple times during this made it a lot worse.

I've had a bit of all the symptoms but the one constant has been the light headed feeling above all straight through it. Had a good few days now hoping its at it's end!

Last edited by softball111; 01-31-2012 at 05:42 AM.

 
Old 01-31-2012, 05:49 PM   #6
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Re: Labrynthitis my experience so far

I hope it's on the mend as well. I went deaf overnight back in August, still dizzy, still deaf and still constant 24/7 high pitched tinnitus. Getting frustrating now, docs say they don't know what it is, if my hearing will come back, if the tinnitus will go away. Went for a hearing test a few weeks back, I don't think she's an audiologist, but her opinion was I've expereince senso-neural hearing loss. Initially when this all went down my family doc thought I had labrynthitis.

 
Old 01-31-2012, 05:51 PM   #7
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Re: Labrynthitis my experience so far

Good luck to you though.....never knew how absolutely dibilitating this could be!

 
Old 02-03-2012, 06:33 PM   #8
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Re: Labrynthitis my experience so far

Update:

I went an entire week plus without any dizzyness or lightheadedness. I had a touch of nausea from time to time, but nothing like it was when this was really strong. Overall the best week I've had in about 8 weeks. It's starting to look a lot like the ENT was right..(VN/Labs)...but I'll keep updating this as time goes on in case there are changes.

Was able to workout at a good intensity this weekend without experiencing any dizzyness or lightheadedness. i had a "touch" of nausea after yesterdays lift, but it subsided as time went on (probably the brain just adjusting to the movement?) Todays workout I had some fatigue (much like when the labs was in full effect) but not to that level. I guess its just hanging around a bit..but no dizzyness which is good. My ENT said once I feel better to start working out and it would take some time for my brain to fully adjust.

Overall a pretty good 9 days...hoping it keeps up! I'll keep updating this thread as time goes on.

Last edited by softball111; 02-05-2012 at 06:18 PM.

 
Old 02-12-2012, 04:15 PM   #9
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Re: Labrynthitis my experience so far

I went to the gym both days and upped my routine closer towards what I was lifting before the ear issues. I noticed that every time I go to the gym I feel like I "stir" up some symptoms, although its a LOT less than it was back in December, its more a feeling of fatigue when back in december I had to leave the gym from lifting and was very dizzy and nauseas.

I read a book on inner ear disorders, and noticed that PLF of the inner ear is said to be aggravated and show symptoms from heavy lifting, straining, bending over..and a few other things. I wonder if I had (have) PLF and not vn/labs?

Interesting thought. It seems to match as well, but no hearing loss, and it has improved.

 
Old 02-17-2012, 03:36 PM   #10
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Re: Labrynthitis my experience so far

Haven't posted in a while. I had a good 8-9 days, then I started to feel it again. This week was decent, but last couple days esp the "light headed" feeling is back, not to the same extreme, but causes a touch of nausea and a light headed sensation. I thought I was almost done with it, but it seems like it just doesn't want to go away for good.

I'm going to the Neurologist this week, I'm wondering what other tests he will perform to see if he can narrow this down??

I'm starting to guess PLF...based on a book I read that says its aggravated by exercise, and it seems to come and go almost.

Last edited by softball111; 02-17-2012 at 03:37 PM.

 
Old 02-29-2012, 02:20 PM   #11
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Re: Labrynthitis my experience so far

Quote:
Originally Posted by softball111 View Post
Haven't posted in a while. I had a good 8-9 days, then I started to feel it again. This week was decent, but last couple days esp the "light headed" feeling is back, not to the same extreme, but causes a touch of nausea and a light headed sensation. I thought I was almost done with it, but it seems like it just doesn't want to go away for good.

I'm going to the Neurologist this week, I'm wondering what other tests he will perform to see if he can narrow this down??

I'm starting to guess PLF...based on a book I read that says its aggravated by exercise, and it seems to come and go almost.
Hi Softball, I was just reading this thread and was wondering what the Neurologist told you..? I have bilateral vestibular loss, but I do also tend to get worse when I exercice. From what I have read, and from what I understand from other people with vestibular disorders, it is common that physical exercice triggers the dizziness/lightheadedness symptoms..
Hope you are doing better and that you have some more answers!

 
Old 02-29-2012, 02:33 PM   #12
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Re: Labrynthitis my experience so far

Neuro is sending me for an MRA/MRV of the head and neck, also had a TON of blood tests. Gonna have all results next week. He also mentioned inner ear, but it seems he is thinking of a lot of things that cause the symptoms I presented to him.

 
Old 02-29-2012, 02:53 PM   #13
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Re: Labrynthitis my experience so far

That is the problem, some of the symptoms are so common to several disorders, that it is difficult sometimes to make a clear diagnosis.
In my case the caloric tests and the ENG were clear to show a bilateral loss, but I am also doing a scan of head and neck next month to check out for more possible issues...
Make sure he checks for Lyme disease in your bloodwork. I have met a lot of people with similar complaints to yours/mine who ended up finding out they had Lyme.
Good luck!

 
Old 02-29-2012, 07:47 PM   #14
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Re: Labrynthitis my experience so far

Thanks. I get results tomorrow, checked for everything under the sun that causes this type of situation.

been wondering about kidneys for some reason...random, and i dont seem to have specific symptoms, but the blood tests should show any concerns there if there were any. more info tomorrow.

 
Old 03-02-2012, 09:26 AM   #15
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Re: Labrynthitis my experience so far

Quote:
Originally Posted by softball111 View Post
Thanks. I get results tomorrow, checked for everything under the sun that causes this type of situation.

been wondering about kidneys for some reason...random, and i dont seem to have specific symptoms, but the blood tests should show any concerns there if there were any. more info tomorrow.
I had surgery for suspected perilymph fistula and nothing was found. My doctor did the repair anyway but it didnt help me. I ended up having MAV even though I have no headache and have NEVER had a headache in my life. Its actually very common not to have headaches with this. Some doctors will call this chronic subjective dizziness, some will call it MAV. But the treatments are basically the same. I just started Nortriptyline and it has made a difference already.

 
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