The dizzies started about 3 months ago, I was out shopping with my boyfriend and suddenly I felt very “spaced out”. Thought it was a panic attack, and promptly forgot about it.
Following from that, I began to become unbalanced, and rather unsteady when out walking. I went to my GP, who diagnosed Labyrynthitis. A further month passes, and the unbalanced feeling is still with me, so GP refers me to ENT.
ENT conduct various test, and the reselts are as follows :
Rinnes positive on both sides,
Weber is central
No evidence of spontaneous nystagmus
Gait is normal
Romberg, Unterberger and Hall-Pike all negative.
Ent diagnose me with either Labs or Migraine, but did not provide me with any further detail. I am prescribed Betahistine and Cinnarazine, and told to practise Cooksey-Cawthorne exercises.
The day after my ENT appointment, I am litterally bedridden, and cannot move without severve balance problems. I also have nausea, problems focusing, my legs feel abnormal, tinnitus.
Today I got an emergency appointment with my GP, as I litterally cannot stand to live this way anymore. He has arranged another followup with ENT tomorrow.
My question is does this sound like MAV? Is it possible for it to last 3months with no let up? Would all my tests have come back the same with both Labs and MAV?
I really do not know which way to turn. My GP seems to have run out of options, and I fear he thinks I am imagining things!
Welcome and sorry you had to join us.You sound a lot like me! I can’t answer your questions but there are some pretty informed people here that I’m sure will give you some good advice. I have quite a few of your symptoms and have recently started a migraine medicine. Good call on going back to your doc! I have been sent from doc to doc and like you they didn’t really explain to me what’s going on or what to do. I hope you get the help you need soon.
Unfortunately, internists don’t tend to know about MAV. Even many neurologists are not familiar. I have certainly been down the road you have w/ initial doctors not knowing what is wrong with me. You can most certainly have MAV symptoms for months. I’ve been sick for 2 years (not to mean that you will be sick for that long). With appropriate treatment you can definitely get better. Generally people with MAV tend to have negative testing, including tests of the inner ear. I believe with Labs there is usually an inner ear disturbance. Where do you live? Maybe we can help direct you to a doctor in your area. If you truly have MAV I do not believe the meds you were prescribed would help at all.
I have to admit that the medication prescribed is doing very little for me, and the exercises make me feel worse.
I live in Manchester, UK. Im finding it very difficult to locate an appropriate doctor.
The thought of being like this for months, even years, petrifies me. I am so depressed at the moment, the littlest thing sending me into floods of tears. Im very scared.
I used to look at the site labyrinthitis.org.uk/ where many people live in UK. However, people on that site don’t only have MAV - the site was originally created for labs. you may want to ask someone on that site where they went. I remember people speaking a lot about Queens Square? I think that was it. I have been very depressed about this illness as well. It, though, is not a life sentence and people get better. In the meantime, though, it is awful and I am so sorry you’re suffering
Hi Elfie, your initial symptoms and treatment sound just like mine. The exercises made me feel worse too. The meds helped a little with the nausea at times but not the headaches or vertigo. It’s all very scary and depressing at first but it can and does get better, although it’s just not easy to find a knowledgeable doctor. I’m in the UK too and sometimes wish I has access to the balance doctors in the US as mentioned on this site. I have no idea whether we have any comparable ones over here who are experts in MAV but I sure would like to find out.
BTW I don’t know if you’ve seen the ENT specialist again yet but I was told by an audiologist that SERC (betahistine) would make things worse if the underlying cause of the dizziness was migraine. I say that in case you have the chance to ask about meds. It might be worth a mention.
Just a quick update to let you all know how I got on at ENT.
They are 90% sure that my problems are down to MAV…they still wont entirely rule out Labs though.
I have been put on 10 mg Amitriptyline, and 120mg Propranolol.
Been on the meds a few days now, touch wood no major side effects, been on Propranolol before with no problems. Am having nightmares, that could be connected to the Amitriptyline, but we shall see. Would have nightmares over dizziness anyday!! Also have been prescribed Stemitil syrup 10ml…thats probably to cover the labs aspect of the dx!
Does anyone know how long it will take for the medication to kick in??
Elfie - so glad that you were put on meds so quickly. I can’t speak to amitriptyline, but i know for nortriptyline I was told that you can start feeling effects between 30-50mg. Not sure if the dosing is similar for those 2 drugs. Just curious - what made your doctor decide to put you on 2 migraine meds
Propranolol is pretty notorious for causing bad dreams, so I’d bet on that rather than amitriptyline, actually. Both are possible culprits, of course.
Re: dosage and timing, it can take anything from 2-6 weeks; I think 4 is usually said for the tricyclic antidepressants. I know people who have been essentially cured at 10mg (and a few at 20), so high doses aren’t always necessary at all.
Elfie - so glad that you were put on meds so quickly. I can’t speak to amitriptyline, but i know for nortriptyline I was told that you can start feeling effects between 30-50mg. Not sure if the dosing is similar for those 2 drugs. Just curious - what made your doctor decide to put you on 2 migraine meds
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To be honest, I broke down and cried infront of the doctor!! I basically begged him to help me, as I felt my life was over at 27!! Dramatic I know, but I think he took pity on me, and decided to give it his best shot medication wise!!
Ive managed to get out today, which is a huge step forward as I have been bed bound. I felt absolutely terrible, but just being able to stand up is a relief in itself.
It sounds like you got lucky with an ENT who knows about MAV. Maybe it’s becoming more well known. The ENTs I saw a long while back were hopeless. The meds you have been given are as good as any of the migraine preventative medications out there, so it’s worth giving them a shot. With migraine preventatives I’m afraid it’s a case of trial and error.
I am in London and am seen at the National Hospital of Neurology and Neurosurgery. I was initially seen in the department of neurotology (different from neurology) they are specialists in dizziness and balance. I am seen under a doctor called Rosalyn Davies who is great. If you decide to go I’d get referred to her, although as it’s NHS you may not see her but one of the consultants who work under her, however more often than not they are great too. Generally, for a dizzy person, the initial doctor to see is a neurotologist. Don’t be alarmed if your GP doesn’t even know what you’re talking about, it’s a very specialised field and many people even in the medical field are unfamiliar with it. I was referred on by neurotology to neurology as I proved a tough case to treat and they specialise in migraine. As someone else here said, it depends on the neurologist you see how knowledgeable they are about this condition, which is why it’s often a good idea to see neurotology first.
If there isn’t the required specialist in your area, then your GP should be at liberty to refer you to London. I think there are people on the board who are seen by neurotologists further north. Will do some rooting around and see what I can find. I know they aren’t only in London.
At three months in it’s very difficult to say whether it’s MAV or lab also known as VN (vestibular neuritis.) Although generally people with labs have an extra hard time with VRT (the balance exercises.)
Don’t go telling yourself you might be ill for years etc… Remember that the people who are on the net are often the longer term sufferers. We aren’t the norm at all, we are the harder to treat cases. I know people with Labs who have a tough time for a number of months but are then fine, also many with MAV who find the right medication and get better.
I have had a VERY bad day today…back to the off balance, swaying routine.
Yesterday I felt well enough to go to the local shopping centre, (all be it, I did so wearing dark glasses, and with a friend for literal support!), Im wondering whether I over did it, what with the bright lights, and noises, and that has triggered another dizzy day today??
Ringing in my ear is still as persistant as ever and I just feel like blurgh!