New and Scared at 21!

Hi everyone!

My names Lucy, and I’ve recently received a MAV diagnosis at 21. I am currently studying for my final year at University in Liverpool, but back in November I started getting awful rocking vertigo symptoms. (the floor moves as I walk, objects swaying in vision, never the spinning kind). I have a personal history of migraines and my mum used to suffer from migraines with spinning vertigo and balancing problems, so all along I believed this is what I had but it took a long time for the doctors to believe me and before they agreed to start trialing me on medication (they believed it was all stress related!) I have recently been started on Topiramate, and on day number 12 after going up to 50mg, atm only side effects are slight tingling and tiredness, I was wondering how long it might take until any benefits might be noticed and what dose? thank you! xxx

Hi Lucy, you are not alone! I have the rocking vertigo w/o spinning and it started around November too. It’s just horrible isn’t it?? Emotionally and physically. I’m 18 so young too and feel like it has robbed so much from me. Liverpool was actually one of my uni choices but I’ve had to defer my entry. Taking exams with this sensation of motion is awful. I was diagnosed with MAV by a neuro-otologist at Queen’s Square Ldn. I had lots of tests, about half of which came back abnormal in some way. Paradoxically though I cried with relief at having some PROOF that I wasn’t making it all up! I haven’t been started on meds yet so I can’t really answer your question; however from what I’ve read Topamax can take up to 3 months for you to see improvement, so I wouldn’t worry if nothings changed yet. It’s a great sign that you haven’t had any intolerable side effects as some people have a bad reaction and have to come off it before they can benefit from it.

Sarah xx

Very happy you finally have a diagnosis though that’s such a relief for you!! are they going to start trialing you on medication soon? These are horrendous symptoms and it’s so frustrating going through them at this age as absolutely none of your friends understand at all how hard they are to put up with, and having to revise at the same time has been so bad (whilst also having the energy to maintain a social life!!!). Luckily I learnt a way to live with the vertigo and so have still been able to have a really fun year, and when you go to uni you’ll be feeling heaps better so you’ll be absolutely fine!! What other uni choices have you put? Liverpool is amazing would definitely recommend to anyone :slight_smile: xxx

Hey, guys. I just turned 24 and was only recently diagnosed with MAV in January, so it’s comforting to see other young people in my situation. So far I’ve only trialled Gabapentin for four months, but it’s doing absolutely nothing. I’m going back to my neurologist in nine days to hopefully reevaluate my treatment plan. Keep us all updated on what is and isn’t working, and I’ll do the same! Good luck.

Also, I’ve seen many, many people on here talk about Topamax. It’s apparently a rough drug to start with, but if you’re on day 12 without any significant side effects, I guess you’re doing quite alright! I’m very curious to try Topamax next, but I’ll just have to see what my neuro says on the 20th. Most people say it takes between 3-4 months before any of these meds really helps, so don’t dare give up until you’re at least on 3 months! And a lot of times, it seems like people can’t expect their very first med to work. A lot of people have to try 2 or 3 or more meds before finding the right one. It takes time and energy, but that’s just the way it is. I try not to get disheartened that I’ve already spent four months on one med that hasn’t helped at all, but from spending so much time of this site, I know that’s not uncommon and isn’t something I should be disheartened by. It’s all about trialling meds and maintaining a diet/identifying triggers. These things take time. Do keep us updated on the Topamax!

Nice to meet you Nick :slight_smile: Sorry to hear that you’re not benefiting from the Gabapentin, hopefully you’ll have more luck with the next trial. I agree that it seems to take time and effort for people to find relief but I believe there is a way out for everyone and that identifying triggers is important as well as the meds. Lucy, I should be starting meds soon. My neuro-otologist asked me to first keep a diary of my symptoms/triggers. I’m also seeing a neurologist at UCLH- my MRI was normal but because my test results showed mainly central rather than peripheral (inner ear) problems she feels responsible to double check nothing more sinister than MAV is going on. I got the feeling she was a little surprised I was getting these symptoms at my age as it seems most sufferers are in their 30’s. However she said there is a 0.001% chance it will be anything worse and i’m pretty confident about the MAV diagnosis seeing as, like you, I’ve had migraines in the past and my mum has migraines with aura. I can totally relate to the ‘friends not understanding’ thing- unfortunately I think it’s impossible for them to image the symptoms we describe as they really are in a class of their own. A big well done for still making the most out of your last year at uni and not letting MAV stop you from enjoying yourself. It definitely helps to carry on despite the vertigo and to think ‘i’ve got MAV but MAV hasn’t got me!’. My other uni choices are Leeds, Manchester, Bristol and Birmingham. I loved Liverpool when I visited. What do you study? Xx

Hi Nick! Really nice to meet you! It is really nice to meet younger people too on the forum ,very comforting to know these weird symptoms can happen at such a young age! Good luck with your next med trial, fingers crossed and of course I will keep you updated on Topomax. I absolutely do believe that symptoms can at least “burn out” and these symptoms only get trapped into a apparent “chronic” like state at the beginning and with the right lifestyle modifications in the combination with the right medication they will eventually calm down :slight_smile: I reckon there a lot of people on this forum who do get better within 1-2 years and then leave and never think to visit again!
Out of interest Sarah, how did you go about getting referred to a good neuro-otologist? I did get sent to an ENT at the beginning and some tests done of my inner ear which came back normal, so I got excused pretty quickly, I did ask for an MRI but they said I didn’t need one! For my own piece of mind when I move back home after Uni has finished I am going to try and pursue getting referral to a neuro-otologist and be properly checked over by someone who knows what they are doing for my own piece of mind!! I study Psychology :slight_smile: I’m so sad to leave uni, moving home temporarily to save up money and planning on travelling around Australia for a year with my friend (after my healths back on track!!). But loved the course! What are you looking to study? Good luck for applying! Manchester isn’t far from here and I’ve been a few times for nights out it’s so much fun! xxx

I got referred to UCLH by my GP, however I was initially referred to the neurology department at my local hospital which is where I got the MRI. Both referalls took a lot of persuasion!I would recommend bringing some information about the neuro-otology clinic i.e their webpage to your GP and asking for a referral as I don’t think many GP’s know a great deal about it. If your parents live up north, there is a neurologist called Dr. Silver I have seen people mention who specialises in MAV, or in London there is another MAV specialist called Dr. Surenthiran who I’ve read great things about. You can either pay to see him privately, in which case you wouldn’t need a GP referall, or through the NHS. A year in Australia sounds amazing :smiley: I actually applied for Psychology! It seems MAV minds think alike haha. I got an offer from Liverpool but I am thinking about re-applying for Audiology (hearing and balance) instead which is offered at Manchester and Leeds, because I’ve become quite interested in it from my experience of all this xxx

Thanks for all the information! Yeah it seems doctors are unbelievable useless at anything related to this, they first told me I had an inner ear infection for a while followed by “anxiety caused by third year” so unbelievable!!! and wow seems like we do think alike! Audiology would be so good though, good luck for applying, I hope it goes well. Keep me updated on anything would love to hear your progress (you too nick!) genuinely so lovely to speak to people about it xxx

The GP’s also gave me the labyrinthitis/anxiety diagnosis. It’s such a nightmare! They are probably too used to the idea that migraines can only be episodic headaches, but surely it’s more rational to believe the dizziness could be caused by a migraine variant than by stress. How can stress make the floor feel like it’s moving?! It’s so frustrating as it leads many MAV sufferers to believe they have uncompensated labyrinthitis for years and they don’t get the treatment they need. Yes would love to hear about your progress too so keep in touch :slight_smile: Xxx

Dear all,

I just thought I would add my voice to this discussion, particularly since I am having a virtually identical experience to most of you.

I’m 32 years old, and until Feb 2014 lived a happy, healthy life. After a very stressful week at work (I am a barrister), combined with a stinking cold and sore throat, I began to slowly develop a whole range of symptoms. By far the most disabling is 24/7 rocking. It is most pronounced when simply walking in a straight line, but I still rock gently (in my head, at least!) when standing or sitting still. I, too, was initially misdiagnosed by my GP and by an ENT surgeon with labyrinthitis. After doing a bit of research online, I noticed that many of my symptoms seemed to fit with MAV. In particular, I was getting (and still get) weird tingling and numbness over my face and in my limbs, intermittent fullness and tinnitus in my ears, and some episodes of throbbing pain in my right ear. I but the bullet and paid to see Prof Luxon privately at her London clinic. I had the whole range of tests which revealed no peripheral vestibular damage at all, but some central problems. The Prof had no doubt that I am suffering from vestibular migraines. Because my symptoms are so severe, I have gone straight on to meds. I’ve started on amitriptyline (25mg at first, now 50mg), which I’ve obły been taking for 2 weeks, so early days. I am doing my best (but must try harder) to follow an MAV diet and lifestyle.

This illness has completely turned my life upside down. I am still working full time, but everyday is incredibly tough.

I thought I would share my story so far because a) Nick, the guys on here seem to be outnumbered and it’s good to stick together! and b) Sarah: I suspect that we have passed each other at Queen’s square without knowing it, and it’s good to meet someone in or around London who knows what this is like!

The prof is absolutely confident she can get me better with meds and time. She says she has successfully treated loads if people with the same symptoms. I thought it would be useful if we could all keep each other updated on our progress, and in particular with regard to what has been effective in stopping the godforsaken rocking!!!

Best wishes, and sending super duper healing thoughts your way…

Jack

Jack,

You have the same symptoms as me; except for the ear pain. I have fullness and occasionally it warms up. I have the rocking (even when still), the paresthesia or tingling all over, and intermittent tinnitus. I also get occasional blurry vision and intolerance to fast motion. My balance is off as well.

I have yet to try a med yet. Currently trying the MAV diet with a weights/jogging routine. You should look up the user “beatles909” in the search box and follow his posts. He defeated MAV without medication through diet, disciplined sleep times and exercise.

Thanks John, I’ll check that out now.

I’m having an interesting time on Amitriptyline so far. For the first few days my imbalance became appreciably worse, and as soon as I took it (at night) I was out like a light for 7/8 hours. The sedative effect has now worn off completely (which is annoying) and I am having to put up with an almost intolerably dry mouth which is kind of affecting my speech. However, deep down I feel that it is just starting to dampen the very worst of the throbbing pain that I used to get. No impact on the rocking yet (which is what I really want to rid myself of) but it is very early days and there is no point being despondent when I haven’t given the drug a fair chance to take effect (or so I keep telling myself)

I have very mixed views about these forums. overall, I think that they serve a very important educative purpose and I have to say that Scott has done an extraordinary job in collating all the information and advice that he has. However, as I think Nick (above) has suggested, there is a bit of a risk of finding yourself staring into the abyss, particularly when you are in the early stages of the illness and you read horror stories of people still suffering years later. I think that there is a real risk of becoming obsessed with what might happen rather than trying to deal with what is actually happening.

I hope your diet/exercise routine goes well. I’m going to try to do the same to supplement my meds. Wish me luck!

Jack :roll:

Lucy
In regards to the topiramate, it can take (and usually does) 3 months at the target dose before people see what it is going to do.
Sorry this is happening to you at such a tender young age, but I believe you will get great control over it. :slight_smile:
Hugs,
Kelley

thank you everyone for your replies :slight_smile:
In general I actually have good things to report!! For only 1 month into Topa at so far 75mg, the floor moving sensation which is my biggest complaint is lifting, and barely noticeable anymore, and my visual vertigo is a million times better, I’m starting to feel like my old self again already which I am thrilled with :slight_smile: my doctor wants to move me up to 100mg in a few weeks time, which will be therapeutic dosage, so hoping that will get me to 95% mark, I know it’s early days so don’t want to jinx, but at least these good days are giving me the encouragement so stick out the bad days, and will be a reminder that life can easily get better again! I think it helps too that my exams for University have finished now so I’m no longer revising 12 hour days so not anywhere near as stressed as I was a couple of weeks back…
Jack and John, good luck for trialling meds would love to be updated on your journeys, absolutely believe these symptoms can go into a “remission” or burn-out with a combination of meds, lifestyle diet and exercise! x