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Vestibular Migraine (associated with dizziness)

Posted , 6 users are following.

carina62
carina62

Hello I would like someone who has this to post as I have this and am at the end of my tether with it.  I don't know why I have it, what's brought it on but I'm under a consultant at Derby Hospital for it.  I had a follow up appointment this week and she's now increased my dose of Nortryptyline from 40g to 50g and wants to see me again in July.  I'm also a T2 diabetic with other ongoing health issues.   I'm just wondering will I ever feel normal again and go back to the days before I was diagnosed with this?  It's very hard to describe my symptoms but I have these every day,  feeling off balance when I walk, swaying feelings if I'm sitting down or standing up, forehead frontal headaches.  Although the medication has helped I'm by no means 'cured'.  I've tried to google as much information as I can about it but I don't feel none the wiser.  Can anyone relate? 

0 likes, 18 replies

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  • gillian76726
    gillian76726 carina62

    Posted

    Did you follow up on that info i sent you about the place in Leicester?
  • eleftherio33095
    eleftherio33095 carina62

    Posted

    Migraine specific medications, such as tryptans, may be more beneficial.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

  • Wobbly_1
    Wobbly_1 carina62

    Posted

    Hi I have had similar problems for the last 3 years Meniers for 20 years then 2013 I started to have  short sharp dizziness and like some was hitting my head like a jerk, I had the Epley manoeuvre for this which took some time before we concert it but was still left with dizziness in my head and blurry vision. I am now being treated for vestibular migraine and taking Nortriptyline which I have had to increase to 6 tablets each evening due to some symptoms coming back again I was told I could take up to eight by my neurologist, my Dr may not agree to this but we shall see. We shall see I am at the moment getting a lot of bumps on my face that turn in to a spot which I am not happy about so have got to get a Dr appointment to ask about this.the constipation if suffering, drink plenty of liquid non alcoholic of course.  I read a report from a women with similar symptoms who took Nortriptyline and after a year she was better, I think she did take Magnesium and a vitamin B tablet I have not gone down this route yet.  At least on the Nortriptyline I can get out and about again. . I go to see my Neurologist next July I shall have been on it for a year by then. At the moment the only other tablet I take is for BP and Statins. Hope this information is of use to you.   I know it is the continual vertigo and dizziness that causes the anxiety I was a different person before this all started, even though I suffered from Meniers that would come and go, but this just seems to go on and until now nothing stops it. Do your balance exercises they do help. All the best.
  • Terry6872737
    Terry6872737 carina62

    Posted

    What I have read is that on average most people try up to 4 different migraine medications before they find the right one to alleviate the symptoms.  Some even have to take a combination of different ones.  Interesting that your doctor would stay with the same one and just keep upping the dosage if you haven't experienced significant remission.  How long have you been on the nortriptylene?

  • Scaniaman
    Scaniaman carina62

    Posted

    Hi my wife has had it for nearly two years. It came from nowhere but she was told it came from a virus. Our grandson had measles at the time so don't know if that's what caused it.

    She was off work for 6 months really debilitated had some exercises and was told to live her life drive etc. The specialist said it would take time the older you are the longer it takes.

    It's very frustrating for me as she won't go and see him again because she doesn't think he can do any more but after her improvement after 6 months the odd GOOD day she used to have are very few and far between. She is 71 and very active but VN has really knocked the stuffing out of her and to prove a point she's in bed at the moment as her head is whizzing where normally she would be whizzing around.

    Not good news for you but maybe gives you a better perspective.

  • Terry6872737
    Terry6872737 carina62

    Posted

    Another friend of mine on this forum sees Dr S. S. Surenthiran in London. I am in the US and googling the distance from Derby to London shows almost 3 hours.(not sure where you actually live) He is supposedly the best in the U.K. for this issue.  I have also read several success stories from others being treated by him.
  • Terry6872737
    Terry6872737 carina62

    Posted

    Dr Surenthiran qualified at Kings College Hospital Medical School, London and did most of his postgraduate training in London and in Manchester, where he was also a Lecturer at the University of Manchester. He is one of the UKs leading specialists in the treatment of balance disorders and has a national and international reputation and referral base. His work has been featured on the BBC national and local news as well as on ITV and Channel 4 and in national and local newspapers. He set up the Balance Centre at Medway Maritime Hospital which is now widely recognised as a Centre of Excellence in the management of balance problems. With regard to balance disorders, a study of 50 patients he has seen has shown that, on average, they had been unwell for 44 months before they saw him and in that time had seen at least 2 other hospital specialists (about 5 times) and their GP an average of 8 times. However, these same patients were, on average, 70% better 9 months after their first visit to him. He also diagnoses, quantifies and is able to recommend the most appropriate treatment / management for hearing loss and tinnitus. Dr Surenthiran lectures regularly at national and international conferences and courses. He organises and runs the Vestibular Rehabilitation Course (Basic and Advanced Parts) and is on the Faculty of the Leicester Balance Course. His research interests include balance disorders and tinnitus.
    • Wobbly_1
      Wobbly_1 Terry6872737

      Posted

      I am also lucky to be treated by him, it was good to read all you have written about him.
    • gillian76726
      gillian76726 Terry6872737

      Posted

      I have already given Carina info on this, and told her to check Leicester etc etc.
    • gillian76726
      gillian76726

      Posted

      P.s. He is also connected to,the hospital,faculty in Leicester, Spire Health Webaite has all info.
    • gillian76726
      gillian76726 Wobbly_1

      Posted

      hi, can you tell us the kind of treatment you had with dr S? I'm just interested to know if it's different from other treatment i've had elsewhere (Which did nt help)

    • Terry6872737
      Terry6872737 gillian76726

      Posted

      He appears to be one of the best in the U.K., if not the world, from what I read.  I found it interesting that his patients average seeing him at 44 months.  Quite indicative of having to chase a diagnosis/solution.  The other lady that is seeing him indicated that he has a good bedside manner and is easy to talk to.

      We've talked many times but, I cannot remember what all you have tried and the time that you have been struggling with this condition.  Hopefully, Wobbly 1 can add what Dr. Surenthiren has been able to offer him in his treatment course.

      It's always good to learn from others experiences.

    • Terry6872737
      Terry6872737 gillian76726

      Posted

      I looked back on your posts and now remember that you have been suffering for several years trying to find a workable solution.  There has to be one out there for us all.  Just getting the right doctor and whatever medication can help goes a long way.  The search poses a lot of challenges.
    • gillian76726
      gillian76726 Terry6872737

      Posted

      Yes Terry, still. CHugging along! Not easy as you know. No real progress to be honest. Am having Bowen Therapy now and then. Not sure it's making the dizzy thing better, but helps with the  sore, achy,tense stuff that comes with this conditon. Bit diff from physio, concentrates more on the nervous system.  How you been?

    • Terry6872737
      Terry6872737 gillian76726

      Posted

      About the same as I've been for the past 18 months. It wax and wanes around 90 percent recovered from onset. Barometric issues are a killer for me. Had a couple of months with nausea added in.

      I highly recommend a book by a neurologist at Johns Hopkins here in the US. You may want to take a look at it, "Heal Your Headache - The1-2-3 Program". It really opened my eyes to Vestibular Migranes and the symptoms. I think that is one of the things that Dr. Surenthiren sees in the treatment of his patients. It amazed me at the symptoms that they cause. Dr David Bucholtz wrote the book. As I mentioned, he is a neurologist and specializes in headaches.

      You should take a look.

    • gillian76726
      gillian76726 Terry6872737

      Posted

      Well 90pc that's good!  Yes barometrics are hell. We've had really hard frost weather, low temps. It's the extremes I feel to blame,  same in Summer.  I will def look at that book,,sound interesting, even though i dont get migraines, a person i'm in touch with in Canada does.

      keep,going Terry!!

    • Terry6872737
      Terry6872737 gillian76726

      Posted

      You'll be surprised when you read rhe symptoms.  A headache is not necessarily a component.

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