Sunday, 13 October 2013

Vertigo..........MS or Menieres Disease???

I have recently received a few comments on my blog that have made me realise how important it is to keep writing my posts. I haven't written for a long time but I have decided that it doesn't matter how long is between each post as long as I carry on writing them. So.............!!
I have actually been having quite a rough time lately because I've been experiencing very bad vertigo. It started around eighteen months ago and I would have just one attack every few months. That attack though, would not be very pleasant. It would come out of nowhere and completely side swipe me. I have had an issue with my left ear for a while now too where I can't hear properly and I have a kind of tinnitus, where I can hear a sort of running water noise all the time in that ear. I had been to my doctor about it and she'd told me it was probably middle ear congestion. I'd asked her if it would affect my hearing but she said I would be okay. 

So I carried on, it was now around September last year. I then started to have a cluster of bad vertigo attacks. I had around six in a couple of weeks. And they were really bad. The whole room would be spinning, I couldn't focus, I was sick and all I could do would be to get myself to bed and try and sleep. 
Sleep meant I was unconscious so I didn't have to deal with how I felt. :-(

Fortunately I was at home each time, I actually didn't like the idea of going out in case it happened away from home. How iwould happen was that I would literally feel it come on, the room would turn upside down and I couldn't focus with my eyes, either with my glasses on or off. A few times I was sick........well I say I was sick but I wasn't actually bringing anything up. I was retching but with such ferocity that I would lose control of my bladder. 

That is a horrible feeling but it is also very scary :-( 
Like I said I had about six attacks in around two weeks so I went to see my GP, who was fab! She said it sounded like I had BPPV - Benign Paroxysmal Positional Vertigo. She also said that we had a doctor in the surgery who was more knowledgeable about vertigo so she got me to see him. 
I explained everything that happened and he explained that there is a manoeuvre that can be done that can tell the doctor if it is BPPV or not. He asked if he could do it on me which I agreed to!! 
I was terrified it would bring on the symptoms but at least I'd know what it was! 
He did this manoeuvre which was horrible. You sit up on the bed with your knees bent, the doctor takes the weight of your head and lowers you down backwards leaving your head dangling off the end of the bed.

The idea of all this is, with BPPV, is that there is debris in the ear that has come loose and is moving around and it's this that makes everything feel as though it's turned upside down. 
The doctor performed this on me but nothing happened!! He said this could happen but he was still convinced that it was BPPV. He gave me some medication and said to come back if it continued. 
Within a few weeks I was back. I had had another cluster of attacks. He tried the manoeuvre again but still no result from it. He was still sure it was BPPV though.
Things settled for a month or so, then after Christmas it all started again........another cluster. Eventually I saw my GP again who did a referral to a physio who specialises in vertigo.......a vestibular physio.
I got a date through and kept a note of the attacks I was having. 

Martin came with me, which he does with all my appointments. I was concerned that she would do the manoeuvre and if it brought on the vertigo I wouldn't be able to drive. She did do it but it didn't do anything and she was able to rule out BPPV, so I don't have that type of what do I have and what is causing it?? She didn't have those answers! She thought it could be vertigo induced migraines but she didn't know for sure. She wanted me to have a hearing test because of my left ear and she was then going to refer me on to an ENT specialist who deals with vertigo etc. 

I had the hearing test and I'd get those results when I saw the ENT doctor. I got the appointment through and we waited.
I made a note of when the attacks happened and we went in for the appointment.
I was actually there for a good couple of hours. We saw the ENT doctor and had a chat to start with. I went through all that had been happening and I asked her for her suggestions for what could be causing the vertigo. She said she wanted to do some further tests and to look at my hearing results but that it could either be my MS causing it or Menieres Disease.

She got my hearing results and my right ear is fairly normal for my age but my left ear is down considerably compared to my right. Which was no surprise to me but what was a surprise is that the hearing has gone and I won't ever get it back. I had been under the impression that it would come back one day! 
Then the doctor asked if they could do a further test with me. Firstly they would do something with my eyes. They put sensors on my face and I had to follow a light with my eyes. Then they put water in my ears. First it was hot water that was 7° above body temperature then it was cold water that was 7° below body temperature. In the right ear, because that one is OK, it made the room spin but my left ear, I didn't feel anything, which once again showed that the left ear wasn't working properly. It turns out that my left ear is down to approximately 36% use now :-( 

The doctor decided that the best way forward would be for me to have an MRI scan. She would be looking at the eighth nerve in the brain, this one is connected to hearing and balance. If it showed any demylination or ms plaques then it would be most likely that the MS was causing the vertigo, if not then we would probably be looking at Menieres Disease. Either way it isn't going to be great news. 

There was not a lot to do now other than wait for the MRI scan - which I've had now - and then wait for another appointment with the ENT consultant, which I've got and is on 6th November!

My head is in a bit of a spin, excuse the pun, because it's not great news either way and that is quite frustrating but there's nothing I can do until I know one way or the other. 

Unfortunately about six weeks ago I had another cluster of vertigo attacks. I had around 9 attacks in 21 days, it really wasn't pleasant. 
I'm touching my head as I write this but I've not had an attack now in over two weeks, which is a real result!! And medications wise I have already been taking Betahistine and Cinnarizinne but I went back to my GP and I'm on Prochlorperazine now too. 

So that's where I am with it all now. I'm waiting! And while I wait I'm on holiday with my Dad and Martin........the best kind of distraction!! :-) 

I hope everyone else is keeping well and is glad the heat of the summer is now over!

Best wishes and much love :-)


  1. Hello my name is Rachmat Tubagus. i'm physician from Indonesia. Both Multiple Sclerosis and Meniere disease has vertigo as symptoms. however, vertigo in Meniere disease is severe in early and more mild in later. Thank you for share about Multiple sclerosis

  2. I just came across your blog whilst looking for a connection between Meniere's and MS. We are living the same life. I am 47, dx with MS in 2012 and it now looks like I have Meniere's as well. My vertigo attacks are not as bad as yours but I've had trouble hearing from my left ear since before my MS was diagnosed and now the vertigo is so bad. Thank you for what you have posted as I now know I'm not going nuts

  3. Hi Rhonda, it's good to "meet" you! And I'm glad that my post has helped's also good for me to know there are others out there and that I'm not alone! My email is feel free to email me if you want to chat! I've actually had it all confirmed now that I do have Menieres Disease. I'm doing okay at the moment though, I've not had an attack since Dec 16th. Fingers crossed it continues!! I hope you are doing okay, big hugs XxXxX

  4. You were reading the pages out of my life! I too am going through the same exact tests and I have a MRI first part of Ocotober. If that is what we have what do we do? I really don't do well with meds and I can hear fine, just hate when the room spins for 4 days at a time.

  5. Hello,
    I came across your blog while researching something else for one of my clients. But I would highly recommend you take a look at this website it may provide some answers for your vertigo, Ménière's and multiple sclerosis symptoms. Head and neck injuries have been linked to all 3 conditions. There is a lot of other research out there but this is a good place to start.

    I wish you all the best,
    Dr Bill Davis