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Old 09-11-2012, 01:51 PM   #31
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Re: Strange symptoms, waxing and waning...

Hi tee time,

I would highly recommend a balance and dizziness centre. I had all the hearing and balance tests done. Was there for 2 hours. Saw my ent specialist straight afterwards that informed me that all was fine except for the caloric test which showed 53% permanent left inner ear damage. It certainly was a relief to know that I wasn't going crazy. I have been dealing with this since 23rd march. I have a couple of good days then find myself bedridden with extreme nausea and total unbalance.
Tomorrow I am seeing a neuro physio for the first time, so will let you know if it is successful at all.

 
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Old 09-11-2012, 03:55 PM   #32
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Re: Strange symptoms, waxing and waning...

Hi Florida,

When I was at your point in the recovery, I was unable to navigate a grocery store. The store seemed overwhelming and I would get dizzy...too much to look at I guess. The good news, now the store doesn't bother me and I look forward to getting out to shop! You will get there as well! I made profress until about 6 weeks, thats when I seemed to get stuck. It slowly improved with more good days than bad, although my vision os still off. I don't do anything on my own...walks, shopping, etc. I haven't driven in 3 months! My husband is going to be out of town on business for 2 weeks...scary. My neighbor is going to help me, but it will be a challenge just being alone. Don't think twice a out your hubby's birthday...get dressed, makeup, etc. and go out. I always feel better when I get dressed up...makes me feel normal again. I want to hear you had a great time celebrating

 
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Old 09-11-2012, 04:11 PM   #33
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Re: Strange symptoms, waxing and waning...

Hi Snowflake,

Hope you're doing better today. I think I'm going to find a balance/dizzy center. The ENT did all of the testing...my hearing and balance were normal, but my eyes are not tracking properly. Apparently no permanent damage. As the vestibular neuritis symptoms starting going away, I started having problems looking down...the ground looks wavy. I rarely get dizzy anymore. Sometimes just a touch of lightheadedness, but I have been getting a lot of headaches. Had a couple migraines last week and get headaches after I try to take a walk. The depth perception and headaches seem to be the remanents. The ENT referred me to a neurologist who I see Monday. I think I'd like to go to someone who specializes in this stuff...I got nowhere with the ENT. After the initial vestibular neuritis, they think it might be vestibular migraines...although I don't have the dizziness or imbalance. As you mentioned before...I played competitive golf, ski, workout, etc. and here I sit in the house unable to do anything. I did golf on Sunday, although I couldn't walk the course ( and my game was way off). But, it was good to get out! I too love to cook...and that's he one thing that is keeping my sanity. Unfortunatley for me, I have an appetite. So, I'm cooking a lot and eating! I feel so bad for you...I complain because I've been dealing with this since June 11...you've been dealing so much longer. Do you have any type of diagnosis? Keep us posted on yournsppt tomorrow. My thoughts are with you...good luck!

 
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Old 09-11-2012, 04:12 PM   #34
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Re: Strange symptoms, waxing and waning...

Hi Florida,

When I was at your point in the recovery, I was unable to navigate a grocery store. The store seemed overwhelming and I would get dizzy...too much to look at I guess. The good news, now the store doesn't bother me and I look forward to getting out to shop! You will get there as well! I made profress until about 6 weeks, thats when I seemed to get stuck. It slowly improved with more good days than bad, although my vision os still off. I don't do anything on my own...walks, shopping, etc. I haven't driven in 3 months! My husband is going to be out of town on business for 2 weeks...scary. My neighbor is going to help me, but it will be a challenge just being alone. Don't think twice a out your hubby's birthday...get dressed, makeup, etc. and go out. I always feel better when I get dressed up...makes me feel normal again. I want to hear you had a great time celebrating

 
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Old 09-12-2012, 08:42 AM   #35
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Re: Strange symptoms, waxing and waning...

Hi teetime

Well i pushed myself to go out this afternoon and managed two shops (not big supermarkets I may add lol ) then felt quite woozy so came home but I suppose its better than nothing but the walking still isn't right but I did get my hubby's birthday present which is good,I would luv to be able to go out for a meal with him however when I tried that 2 weeks ago it was awful as I'm still un able to put my head/look down and half the meal ended up on the table or in my lap ! verrryyyy embarrassing and people were having a good ol look lol,I'm sure they must have thought I was drunk or something lol,hey hoe,its week 8 now and seem to be stuck at this level for the last 2 weeks ,I just wish my doctor would refer me on ! but he seems to want to wait longer ! and even ifd he does it could be months before I get an appointment as thats how it is with out National health care !!!
I can understand you being nervous about your husband going away ! so would I ! 2 weeks is quite a while especially as your still not right !.
My sick note for work runs out on Monday and am not sure what to do ! try and go back or ask for longer ! very difficult.
When did you say you have yr app ?,I really hope it is of some help,keep us updated.

 
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Old 09-12-2012, 10:09 AM   #36
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Re: Strange symptoms, waxing and waning...

Hi Florida,

Ok, no offense, but I had a really good laugh reading your post about dinner lol I remember telling my hubby that I couldn't look at my plate and couldn't put my head down. If its any consolation, we tried to go out for his birthday dinner end of June, we walked into the restaurant and they had a really busy print carpet and...I got sick! Still afraid to go back to that restaurant

Our health system timing isn't much better. I was referred to the ENT and waitied 1 month for an appt. He referred me to the neurologist and I waited 1.5 months for the appt on Monday. I feel like I've lost a lot of time and no one has mentioned rehab therapy, medicine or what to do to get better. We just were relocated to Minnesota for his job. I finally found a job and was supposed to start two weeks after this all happened. Needless to say I lost the job and am unemployed. Frustrating because I can't even look for a job not knowing when this will be over. I know one person out here...my neighbor who is going to take me to the dr appr and walk the dog while hubby is overseas. Going to be a long 2 weeks

Really try to go to dinner. Maybe pick a place that isn't crowded and doesn't have a busy decor and go early to avoid crowds. I know its really hard and I don't listen to my own advice a lot, but the more you go outside and be in normal environments, the faster the brain compensates.

Hubby is coming home from work to take me to my hair appt...driving again will be great!

 
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Old 09-12-2012, 01:26 PM   #37
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Re: Strange symptoms, waxing and waning...

H Teetime

I'm glad you had a laugh lol ! there has to be a funny side to this for us !
The plan is now my hubby is going to cook a meal (bless him ) and has invited some friends over ! poor bloke cooking his own meal on his birthday lol ! but he does enjoy cooking and it was his idea !.
How awful for you to have to move,get a new job and then to have all this ,thats just the worst timing :and never to get the opportunity to start it ,I really do hope you get things sorted so you can begin yr new life !,always difficult when moving to a new area,its good yr neighbours seem nice and will help you out which is a relief for you.

 
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Old 09-13-2012, 08:45 AM   #38
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Re: Strange symptoms, waxing and waning...

Hi Florida,

I'm sure you're hubby will have fun. Hopefully you can enjoy the night too. Our move was good, but when you're not feeling well and family/friends are 2000 miles away...it gets lonely. Enough of the sob story! I did go for a 15 min walk with the dog today...hubby is gone. I have a bit of a headache from the walk, but hoping it will pass soon. At least I tried it alone! How are you doing with the meds? Any improvement or side effects?

 
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Old 09-13-2012, 08:48 AM   #39
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Re: Strange symptoms, waxing and waning...

Hi Snowflutter,

Just checking in to see how you made out at the neuro physio. Hopefully you got good news! Let us know how you're doing?

 
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Old 09-13-2012, 12:45 PM   #40
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Re: Strange symptoms, waxing and waning...

Hi Teetime

Wow ! that was good you managed to walk out for 15 mins on yr own as you said you haven't been going out alone,that was a real achievement !,I did manage a small 5 to 10 mins walk down the street with my husband today ,it wasn't a quick pace,infact very slow but better than nothing !
Yes my poor hubby will be cooking (however he does enjoy cooking for guests) and hoping I will enjoy it but have a problem with my teeth now ,,a part of one of my large teeth fell off the side last night and can barely drink without being in pain ,have an app tomorrow morning but am soooooo petrified of the dentist I've been in constant state of high anxiety since and lots of tears ! as if i haven't enough going on at the moment.
You say yr 2000 miles away from yr family ! thats gota be across the world ? as I'm in England which I think is over 3000 ?,we live 200 miles from our families and it took a good 2yrs to stop being home sick and it's now 17 yrs we've lived here and have made some good friends(shame u had't had the chance to do this before yr illness ).
I really hope things improve for you very soon.

 
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Old 09-13-2012, 12:49 PM   #41
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Re: Strange symptoms, waxing and waning...

whoooops ! forgot to say I'm on day 4 of the new meds and can't say I've noticed a massive change ,not sure if there doing anything or not ! or is it just time making the difference !

 
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Old 09-13-2012, 01:21 PM   #42
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Re: Strange symptoms, waxing and waning...

Hi tee time,

So I went and saw the neuro physio yesterday. It was also a really bad day. Had to have my mum take me in, ear plugs in to drown out the noise, sunglasses on to avoid the bright lights, I find hospitals as unbearable as walking into a supermarket. Couldn't walk unaided as I was walking as if I was drunk and had the severe nausea.
So I tell the lady my story and how I've had every test done, MRI, balance, hearing, caloric etc. then she asks me my symptoms and which side I tend to lean to. This is where she found it really odd. Because I was diagnosed with vestibular neuritis with 53% permanent damage to left inner ear but all my behaviour patterns were determining that it should be my right. Really strange.
At this point I am on the verge of being sick as the nausea is really bad.
She puts me on the bed and did the Epley maneuver for my right ear and apparently my eyes were flickering extremely which she determined to be BPPV in my right ear. So she finishes and I sit up feeling worse than before. I take a seat and gradually I'm starting to feel better. I was in a state of shock. So she gives me instructions for when I go home. I've followed them exactly and have woken this morning feeling very different. Everything looks different, I have no nausea, I don't have the ill feeling I have had for 6 months. I seriously hope that this is it.
So my diagnosis is that I have had two separate issues going on in two different ears. BPPV in the right ear and vestibular neuritis in the left ear.
She said she had never seen this before and found it quite strange.
I just need to watch myself over the next few days because she is hoping that she didn't disturb the left ear.
So basically, my brain has been getting so many mixed messages.

Thank you for checking up on me and I will definitely give an update in a few days. Fingers crossed.
I hope you are having a good day today. Keep up the walks. Fresh air always does wonders for us.

 
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Old 09-13-2012, 01:53 PM   #43
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Re: Strange symptoms, waxing and waning...

Hi Florida,

Ouch! I hate the dentist too I feel for you, tooth pain is the worst. I'm sorry you've got this on top of everything else. Make sure the dentist knows your meds in case he needs to give you anything. Hopefully you can eat and drink this weekend without pain. Maybe you'll start seeing improvement with the meds next week. At least you're not having any bad side effects.

Great that you went for a walk especially with the tooth pain Slow and short is better than not at all. Thats good that you pushed yourself. When I started walkig with my hubby, I only walked to the bottom of the driveway. Just build up more tolerance and confidence slowly. And celebrate the small successes!

We moved from Pennsylvania, it's almost 2000 miles. Can't even imagine how cold and snowy it's going to be here during the winter We're both a tad homesick. But it's really pretty out here.

Hang on there and keep posted about your tooth...good luck!

 
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Old 09-13-2012, 05:14 PM   #44
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Re: Strange symptoms, waxing and waning...

Hi Snowflutter,

I'm glad to hear that it seems you're on the way to a diagnosis and hopefully many good days ahead. It sounds like you had a nightmare time trying to get through your appt, but good that you managed and the doctor thinks she has a solution. It's strange that you have an issue in both ears...as if one wasn't enough, but at least it looks like this doctor is on top of the problem. With both ears sending conflicting info to the brain, your head must be spinning all the time.

I hope you have another positive day and on on the road to recovery. Check back in and keep us posted on your progress. Good luck!

 
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