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VN then BPPV/MAV- coping advice needed please


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Old 12-08-2013, 12:59 PM   #1
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VN then BPPV/MAV- coping advice needed please

Hi all,

I recently wrote on here describing my VN symptoms and asking for advice on what to do next. However, I went to see a neurologist and turns out he and my PT do not think it is VN and think it could be either BPPV/MAV (as I have a history of headaches/migraines). I got the impression that the neuro did not think I had a 'serious' condition and said to just carry on with physio and go back to him in a month or so if I did not feel better (as all docs seem to have been doign with me for the last 5 months) - I came out of that meeting thoroughly disappointed.

I've been attending physio for the last 3 weeks and have had roughly 8 hour-long sessions in that time. Initially they did help me feel more clear-headed after but I've had really bad headaches in the last couple of weeks which have made my symptoms alot worse (or seem to have anyway). They're usually pretty bad around my time of month as well. My PT seems at a loss to what to do next as trying to cure one problem seems to aggravate another (he's done the Epley so many times but it doesn't seem to be helping anymore).

My symptoms consist mainly of balance problems (not too severe), visual movements, dizziness, headaches, brain fog, head tightness, tinnitus, really bad fatigue. In addition to this, I find it difficult doing things like being in a car at night,speaking to people for a long time etc.

I know my symptoms don't sound as bad as many of you but they have still completely changed my life I'm scared to leave the house alone, feel depressed most of the time and cry alot. I just don't know what to do anymore and any strength I had seems to be going as I realise this is a condition that I'm going to have to live with forever.

I'm due to get married in May next year and need to fly out on a long haul flight this week to aid in the preps for this. I'm terrified both of the flight and of the fact that I might not be better by then. The PT has been taking the approach not to aggravate my symptoms especially as I'm due to be away for a good few weeks.

Reading what other people have to say about how they have survived through this really helps me in knowing that I am not alone. It's difficult explaining this to someone who hasn't been through it as everyone has a 'you will get over it' attitude, even those that are most sympathetic in your life.

I'd love and be so grateful for anyone to advise me on any tips for flying, physiotherapy, tests etc. or just simply any success stories they have.

Please

 
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Old 12-10-2013, 08:15 PM   #2
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Re: VN then BPPV/MAV- coping advice needed please

You describe exactly what I went through in the summer and fall of 2010. I did a year or more of physical therapy, did all kinds of stuff and realized all I was doing was wasting my money with the PT and seeing so many doctors when they said to come back. I went along with it until I was sick of doctors.. I have jumped off that merry go round of doctors and am only going when I NEED to and I decide when I need to go!

The final Dx for me was BPPV and MAV and I had to learn about it myself on the internet. Every symptom I had, especially the florescent light thing that was and still is a life altering problem of mine.... ALL the symptoms I had they acted like they had never heard of this stuff happening to anyone and they would brush it away like I was making it all up. I was seeing the best of the best, the ones that would know and they brushed me off..

Feb 14 2013 I woke up with vertigo and I have had it every day since. I went to see a different ENT and he did the Epley maneuver and that helped it for about 4 days and it has been back ever since...

I hate to sound so negative but I have given up on doctors doing anything about it and am just trying to live with it and adjust my life to that days symptoms.. Some days I am to dizzy to drive so I don't drive, I carry a stick with me to help balance myself when my balance is off. I carry a hat and dark glasses when I have to go in the stores.. I take motion sickness pills on the days the dizziness gives me nausea and I warn new people I meet that I do not drink, I am not drunk, I just have vertigo and balance issues and some days I stagger. I really don't see where the doctors can really do anything. They have me on 2 medications and I STILL have the same problems so I just don't see a point in trying to do anymore. Just address THAT days symptoms and go on with my life as best I can...

I did ask one of the specialist I was seeing about flying and he told me to carry a bottle of Afrin on the plane with me and before take off, dose my nose with the Afrin and do that both going and coming.. I did that and the problems I expected with the ears never happened..

That fatigue is your body constantly adjusting your balance and you having all those problems that your body is dealing with and adjusting. I read that online somewhere so I started paying attention to my body... Even when I was trying to stand still, my body was swaying, leaning, tilting and my body was in a constant state of adjusting.. Pay attention and see if that is happening to you.

Get online and read and learn..There is no cure, I have accepted that and have learned to take each day as it comes.. I have good days and bad days and every now and then I might have a day or days where I am completely normal!

 
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Old 12-11-2013, 06:34 PM   #3
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Re: VN then BPPV/MAV- coping advice needed please

Hi there,
Did you do any tests like VNG, caloric testing with the water or air put into your ears? I have been having problems since March 2012 and now I feel worse with the not being able to focus and I have horrible anxiety, feeling like I'm going to die and very scared with my heart racing. I have this anxiety because of the dreamy-state that vestibular problems is making me have. Can you please tell me if you had any tests that confirmed vestibular neuritis? How were you diagnosed with BPPV and MAV?
Thank you.
PS-I have heard the anti-depressants have helped people overcome some because of it calming their nerves and less worry. What do you think?

 
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Old 12-12-2013, 07:50 AM   #4
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Re: VN then BPPV/MAV- coping advice needed please

Thanks both for responding

Biteneck, I've had all those tests done and nothing came out of them at all which is why the docs assumed it was in the recovery stages of vestibular neuritis.
I've since been found to potentially have bppv/mav and am starting on a preventative migraine treatment as well as physio to try and sort this out.
Re anxiety, I've had quite a bit of this as well but taking small steps at a time eg walking around the block and forcing myself to go to shops etc.
I actually just completed a long haul flight yesterday (without much trouble) and sat through a restaurant dinner for the first time in 3 months just now.
I think the key for now is distraction and trying not to think about it which I am finding terribly difficult and is adding on to my anxiety.

Have you been checked for MAV?

 
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Old 12-12-2013, 07:55 AM   #5
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Re: VN then BPPV/MAV- coping advice needed please

Thanks both for responding

Biteneck, I've had all those tests done and nothing came out of them at all which is why the docs assumed it was in the recovery stages of vestibular neuritis.
I've since been found to potentially have bppv/mav and am starting on a preventative migraine treatment as well as physio to try and sort this out.
Re anxiety, I've had quite a bit of this as well but taking small steps at a time eg walking around the block and forcing myself to go to shops etc.
I actually just completed a long haul flight yesterday (without much trouble) and sat through a restaurant dinner for the first time in 3 months just now.
I think the key for now is distraction and trying not to think about it which I am finding terribly difficult and is adding on to my anxiety.

Have you been checked for MAV? I was diagnosed with this as I have a history of headaches and migraines which they do not seem to have considered before!! It's all a guess as far as I can tell with the doctors and incredibly frustrating but just getting the correct diagnosis is half the battle won even though it may not be the best news.

Re anti depressants, I've never taken any Meds for this based on what I've read about it slowing down recovery but I might have to take them anyway as they are meant to help migraine sufferers.
If anxiety is your main issue, I'm no doc but tiny doses sometimes might help?

 
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Old 12-12-2013, 09:53 AM   #6
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Re: VN then BPPV/MAV- coping advice needed please

I was at a neurologist last June 2012 and he thought it was new daily persistent headache. He prescribe me Depakote but I did not take it because I was afraid of the possible liver damage. I have an appointment tomorrow with the inner ear doctor to see if he can help. My worst thing now is the worry and anxiety. I am having racing thoughts, depression, and my chest feels tighter with some palpitations. I started having these because I worry about the horrible feeling I have had that is lightheadedness and unreal feelings. Have you had the unreal, scary feeling? I think the anxiety makes it worse. Oh, I read that you said you had all the tests and they came back ok. Are you meaning that you had them before and it showed VN? I am wondering how you were diagnosed with VN. Mine was from the caloric testing that they said I had 25% damage to my left inner ear. I really need an antidepressant of some kind to help me deal with all of this. I am so frustrated because over this past summer I started feeling better and then wham, I was hit with the horrible lightheadedness and feeling of passing out or dying while I was shopping in a grocery store in September. Since then I am so scared to do anything. I hope you get better and keep in touch.
Nicole

 
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Old 12-12-2013, 11:45 AM   #7
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Re: VN then BPPV/MAV- coping advice needed please

Hi Nicole,

I'm so sorry that you've been suffering with this for so long! I've 'only' had it for 5 months and its changed my life.

Antidepressants sound like a good idea in your case - I would just go to the doc and explain exactly how you're feeling - I'd imagine a neurologist rather than an ear doc. I've had that unreal feeling you speak of but I try to distract myself like keeping on talking to whoever is with me (mine probably isn't as bad a what you seem to get though). It sounds like you're also having anxiety attacks.

All my tests came back ok including the caloric testing which is why the ENT said I probably had an infection but it hasn't done any damage and I will get better soon - understandably I never had much faith in this diagnosis as my health kept deteriorating. This is why I went to see a neurologist after having read everything on MAV. Lets see how the treatment goes on that front.

I would definitely speak to someone close to you and get them to take you places etc - my theory is that once you have done them once and nothing happened it should e easier to do them a second time. Re blacking out, I keep getting reminded that I've never actually blacked out and apparently it's unlikely it will happen as a result of a vestibular issue... Although another doc went on to say 'so what if you do, there is always someone around to help' I think she meant it in an encouraging way but...

I've realised we need alot of support to get through this so try not to keep your thoughts and feelings inside - I'm a culprit of doing that and things got pretty bad. I'm trying to fight it as best I can with the attitude of ' so what if something happens, I will deal with it then' which is the best I can muster at the moment.

I hope your ear doc appt goes well - keep me posted

 
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Old 01-13-2014, 02:53 AM   #8
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Re: VN then BPPV/MAV- coping advice needed please

Hi Nicole,

How are you feeling now?

 
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Old 01-15-2014, 08:11 PM   #9
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Re: VN then BPPV/MAV- coping advice needed please

Hello,
I'm ok. I saw the inner ear doctor on Dec 13, 2013. He said it sounds like visual vestibular hypersensitivity also known as migraine associated vertigo. He said the 25% unilateral weakness is not a lot and I guess I should be ok. So he is saying it's a central vertigo which means it's brain/migraine. I have a follow up on Feb 21 and might ask about an anti-d. He did prescribe me Klonopin which I have been taking for a month now and it seems to help a little bit. But I take it as nighttime and it's causing me to be overtired in the mornings to the point that I do not feel like getting out of bed. I had an MRI last Friday and the doctors still have to get the results of it. So I'm waiting for that. The neurologist said that we will go in these steps:
1-MRI
2-Postureagraphy test to check balance better and maybe VEMP test
3-Then seeing about medicine. I guess beta blockers can help to stop the fight or flight responses that I'm getting. I think that's what I'm getting when I feel like I'm in a bad dream or coma that my brain cannot break out of.

The dreamy feelings I've had off and on since March 2012 when all this first hit me. But the anxiety and these fight or flight responses just started up in September 2013. Along with these, I feel as if I cannot be outside in the dark and the anxiety makes me feel worse.

How are you?
Take care,
Nicolle

 
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Old 01-16-2014, 04:00 AM   #10
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Re: VN then BPPV/MAV- coping advice needed please

Hi,

Sorry to hear you're not too much better since we last spoke!

At least you have a plan of action now though?

I'm ok - I went away for about a month and that's definitely helped me feel better mentally if not physically. I'd been quite depressed and lost hope prior to my holiday but feel a lot better about things now. I still have massive anxiety about going out alone but trying to force myself to do things that I am not comfortable with to shift it.

I've been put on Dosulepin (anti-d) to treat my migraines which will hopefully help my migraines and in turn my vertigo... the main side effects I have noticed are drowsiness (which isn't too bad and i get a good night's sleep) and being a little 'out of it' on some days - which again i can live with if it helps me! I feel more active on most days than I used to which I'm taking as a plus... I can't take most other migraine treatments owing to my size/weight and some other health issues so I'm just hoping these work!
I'm getting married in a few months so feel as though I have a bit of a deadline on me at the moment!!

 
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Old 11-27-2014, 06:12 PM   #11
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Re: VN then BPPV/MAV- coping advice needed please

Quote:
Originally Posted by SS27 View Post
Hi,

Sorry to hear you're not too much better since we last spoke!

At least you have a plan of action now though?

I'm ok - I went away for about a month and that's definitely helped me feel better mentally if not physically. I'd been quite depressed and lost hope prior to my holiday but feel a lot better about things now. I still have massive anxiety about going out alone but trying to force myself to do things that I am not comfortable with to shift it.

I've been put on Dosulepin (anti-d) to treat my migraines which will hopefully help my migraines and in turn my vertigo... the main side effects I have noticed are drowsiness (which isn't too bad and i get a good night's sleep) and being a little 'out of it' on some days - which again i can live with if it helps me! I feel more active on most days than I used to which I'm taking as a plus... I can't take most other migraine treatments owing to my size/weight and some other health issues so I'm just hoping these work!
I'm getting married in a few months so feel as though I have a bit of a deadline on me at the moment!!
Hello,
How are you feeling now? I'm still in the same position as before. But now I seem to be having problems with a little BPPV. I have read that MAV and BPPV can go together. I didn't have these bppv problems until just about 2 weeks ago. I pray that goes away soon. I have an appt. for a second opinion on Dec. 15. I pray this person can help me more.
Are you better now? Any more derealization or dizziness or how are you in stores again?
Take care,
Nicole

 
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Old 11-30-2014, 01:51 PM   #12
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Re: VN then BPPV/MAV- coping advice needed please

Hi Nicole!

I was actually thinking of you a few days ago and wondered how you were!

So sorry to hear you're still the same - have you tried various meds?

I think I'm better than before - although I had to quit my job (the stress brought my symptoms back with a vengeance). Now I'm quite stress-free and have less bad days - still enough for me not to say I'm on the road to recovery! The downside is that I'm stuck at home most days and have developed pretty bad agoraphobia, which i think is my main problem now rather than the dizziness, which I could actually fight through if i wasn't so weak-minded.

It's all so frustrating.

I still have my moments in stores and malls and general crowds, but as long as I'm not alone i just ignore it. I'm sometimes pretty bad the next day, oddly enough!

Keep me posted

 
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bppv, migraine associated vertigo, vestibular disorders, vestibular neuritis, vestibular rehabilitation



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