Wanting some advice

Hi everyone,

I posted on here a few weeks ago. I am an 18 y/o male. I have been suffering with dizziness on and off for the last 6 years. I have seen multiple doctors and had multiple scans and tests, but no one seemed to know what was wrong with me. At the start of this year, I found this site. I think I now know what is wrong with me :idea: but the doctors say they can not be 100% sure, although it is likely i do have MAV. My parents both suffer from migraines (although no dizziness) and I get very very bad travel sickness.

I am just wanting some advice. Do any of you guys find that the following can cause you to go dizzy? They certainly effects me.

•getting a cold, and therefore run down
•Getting up to early
•Doing too much work in the day. (At school after doing a full day, if I then do say 3 hours homework straight, it will cause me to go dizzy the next day)
•If i go for a walk, especially in the dark, and then go into my house I go very dizzy. We think this is because of the lights.
•Being in a shop, with lights and looking down the isles, which are all lit up

When I am dizzy I have to avoid

•Going into busy, populated places e.g. Trafford Centre ( its like a shopping Mall in England)

Surprisingly, Quick head movements dont bother me, even when I am dizzy

When I go dizzy, I usually wake up with it, and it can be there from 3 days to months (however I do wonder if when it goes on for months, its because I’m getting cluster migraines). I am not usually however constantly dizzy (however I can be). It is usually on and off all day, for weeks.

Just wanting some help and advice, are you similar to me with my symptoms? Do you find anything different?



Oh, and I am taking Nortriptlyine 20mg at night. Not noticed a massive difference since coming on them, so I am upping the dose soon. :slight_smile:

thats awesome that nortriptyline is helping u! how long have u been on it for? do u have any unsteadiness when walking and does it help with that? glad u finally have a diagnosis after so long!

sorry i read that wrong i thought u said it was making a massive difference I didnt see the “not”

It sounds like you are identifying your triggers. You’re so young, you’ll probably have a remission before you know it, and then know what sets it off and avoid that in the future. Take care of your health, get good habits now, and you’ll probably have a remission and avoid a chronic syndrome. I know you want it to be over with right away, but time is on your side, don’t despair :slight_smile:

Hi TJ,
I so sorry you have been dealing with this for so long and at such an early age.
What you are dealing with sounds very familiar, so you are probably on the right track thinking it’s vestibular migraine. All the things you list that make you dizzy make me dizzy too (and probably many of the members on this site). The only one that doesn’t match my issues is going for a walk and then coming back into the bright lights of the house. That said, other high-contrast situations can make me unwell, eg going to the cinema and watching the bright screen in the darkness.
You say that you wonder if you are experiencing cluster migraines when the dizziness goes on for a few months. Vestibular migraine can be the culprit there too. I was dizzy 24/7 for a few years before finding the right medication that slowly dampened that all down till the dizziness was no longer a constant in my life.
I think if you find the right medication (hopefully the nortriptyline is the one!) you will notice an improvement in your symptoms. Note that it can take several months at the right dose to start feeling the benefits (I think it took me about three months at the therapeutic dose of the two meds I was taking to notice the benefits, and then I felt relatively normal). I suggest going slow and steady on the meds, ie don’t increase your dose too rapidly, otherwise you may feel side effects rather than benefits. And if you find that the nort is not the one that helps you, there are plenty of other options out there.
Have you also read up on the lifestyle modifications recommended for migraineurs? Eg regular sleeping and waking times, avoiding caffeine, avoiding trigger foods? There is plenty of info on this site about that for you to read up
I wish you lots of succession managing your health. Keep us posted on how you go.
Regards, Helen

Thanks for all your replies. It means a lot. As someone said, the cinema is another thing which makes me go very dizzy.** One of the worst parts of my dizziness is the nausea. Do any of you take medication to stop it?
I will keep trying with the nortriptlyine. And I will go up slowly, when I first went on them I was so ill. In bed for 4 days straight, feeling sick. So building up the dose slowly is something I will certainly do.

I know this may seem weird, but do any of you wear sunglasses to stop your dizziness. Like I said, if I go on a walk and come back in the house, or in certain shops, I find the lights make me dizzy. But if I wear sunglasses it can sometimes help.

Im really hoping to be able to get back to school soon. The dizziness is horrible, it takes over your life and I really sympathise with everyone who suffers with it.

Oh yes, the nausea! What helped mine was a daily dose of vitamin B6. After a couple of months of taking it the constant nausea reduced greatly. Before taking it though, if you do decide to take it, speak to
Your doctor about dosing and how long to take it for as taking too much/for too long can produce some nasty side effects.

And yes, re the sunglasses, I don’t wear them indoors, but I cannot tolerate bring outside without them. Definitely wear them if they help you.
I hope you get back to school soon!
Regards, Helen

wanted to also support the increase of nort slowly - i was suggested 10mg a month increases - i am current on 60mg.

Are you able to see a neuro-otologist? - or have you seen one? Well known ones in the UK are Dr Silver and Dr Surenthiran, but there are others.

I find the lights in the office are bad for me - anything that is busy, crowds etc, but some of that is to do with some anxiety that i suffer.

stick with the nort, as it may well work for you, its about finding the right dosage.


I have not yet seen a neuro otologist. I have been referred to one in London, but I won’t be able to get to see him due to my dizziness and severe travel sickness :x
Dr Silver is in Liverpool, Im from Manchester so thats not too far! Although is he a neuro otologist or neurologist?

Hi, just wanted to say you can see Dr Silver in Warrington which will be even closer for you. That is where I see him. He’s a neurologist who specialises in migraine and really gets this illness.

helen what meds do u take? how long have u been on them for?

Sarah, I was on a combo of Prothiaden (100mg) and Topamax (125mg). I added the Topamax to the Prothiaden as that was just controlling the head pain and not the other symptoms. The Topamax probably took three or four months at the 125mg dose for me to see results, and the longer I took it the more I improved. It helped very much with the other junk (rocking/light-headedness/faintness/numbness/malaise/stiff neck/visual vertigo etc etc). I wasn’t 100%, but I wasn’t far off and I often had parches where I felt normal. I’m drug free at the moment as I’m
6 months pregnant, but I’ll be going straight back onto the meds as soon as baby arrives.
Regards, Helen

thats great helen! did it make you feel worse before u felt any better? how long did it make u worse for? did u have any trouble walking and did it help with that? congrats on your pregnancy!

alsohow long were u on topamax for?

Sarah, I’m a bit hazy on how long I was on topamax for – I think it was just eight or ten months (baby brain is affecting me!). I did have side effects, which included very fuzzy brain, trouble recalling words or memories, a worsening of temper, tiredness, possibly feeling a big more unwell than usual. But I persisted through and I got results. My secret was to start on a very low dose and increase very slowly. This allowed me to ride out the side effects and also to notice whether each rise produced any positive results.
In terms of walking, the trouble I had was being unsteady because I felt like I was walking on marshmallows, but I never required a cane or anything like that.
And thanks very much for your congratulations:)

Hi there,

I am new to this site. I usually reside on the dizzy times forum. I too find that lack of sleep, over doing things, in my case, shopping, housework etc makes me dizzy! I think this is normal. Also when you’re unwell, for sure!

Can I ask are you on any meds? I’ve just started taking x3 50mg of pregabalin (lyrica) for MAV diagnosed by Dr Surenthiran in December 13.
MAV is a diagnosis of exclusion so you need to have all the necessary tests. Have you seen a neuro-otologist or at least a neurologist? This disorder is a horrible thing to live with, especially at your age! and as your parents have migraine it seems very likely you have MAV. Go back to your GP and ask for a referral. You need a diagnosis. Have you tried the MAV exclusion diet? Eliminating caffeine (only 2 cups of de-caf tea per day) this includes coke and caffeine drinks, chocolate, cheese, chianti, Chinese food (msg, found in lots of sauces, pre packed foods, snacks etc) citrus (including bananas and mangoes). Give this diet a go for at least 10 weeks and see if this helps

Take care