Hi, I am new to this forum. I have something of a success story but am also in need of some advice. I am 18 years old and was diagnosed with MAV 2 years ago, before that I had 4-5 years of mis-diagnosis and confusion. My symptoms were the usual: intense dizziness 24/7 every day, the ground shifting underneath my feat, my head becoming heavy and light alternately, brain fog and an intense feeling of detachment . I dropped out of school for months at a time, completely lost my social life and over time any friends that I had, and as years of different treatments failed to have any effect I was losing hope and considering an easy way out. Luckily for me it was at this time that my GP out of desperation referred me to a neurologist who after about 10 minute’s questioning diagnosed me on the spot with MAV. I have been on a strict diet ever since, along with a sleep pattern and Pzitofen and Pregabalin - the effect of this has been to heavily reduce my symptoms to the point where I am usually about 75%-80% every day with the occasional flare up. It is not perfect and I have since been heavily affected with related anxiety/depression issues, but I have been well enough to attend school again and have managed to get a place at university, something I wouldn’t have thought possible before my diagnosis.
However, while this has obviously been a reason for celebration by myself and my parents, it has raised a whole new set of issues which I was hoping someone of here might have some experience with. Part of my treatment is neither being able to drink alcohol nor stay up beyond about 11 in the evening, these are limits which I know from experience cannot be broken - but I know that so much of university revolves around this kind of activity. The typical university lifestyle involves a lot of intoxicants, a lot of late nights and lie-ins afterwards - but this is all impossible for me. While I resigned myself a long while ago to not being able to live the typical life of someone my age, I worry that I will struggle to make friends and fit in. I know it is trivial but I have been trying to work out the best way to tell people I have only just met that I can’t actually go out with them that night, nor can I get drunk with them or stay up beyond 11 or eat or drink most of the things they do. I’m sure there will be plenty of considerate people there but having this condition for so long hasn’t made me the most out-going person. I was wondering what experience people here have of this situation and how you would usually introduce your condition to someone who has never heard of it, without sounding like some kind of invalid who isn’t going to be any fun to be around.
I really admire your spirit and the way you have pushed on like this. Well done mate and congratulations for getting a place at University. You’re going to love it. What are you studying?
Now re this migraine disease you have to deal with. For me it’s not such a big deal to tell people I can’t do things because I’m an old guy now but to have this at 18 is a whole different ball game I can appreciate. You just want to go out and get wrecked with everyone else. I think what will probably happen is you’ll wind up breaking your own rules and go out and have a drink or 10 anyway and it may all come back to bite you hard and you’ll get over it of course. And maybe your friends will have to see the effect it has on you to know that it’s not cool for you to get smashed and stay out till 2 am. You’re just going to have to tell people the deal. They will accept you or they won’t and if they don’t they weren’t worth having as friends anyway.
You’ll be good. Very pleased to know you have so much understanding of your limits and migraine at 18 years of age.
Thanks mate, that means a lot - i’m doing english lit at Warwick, starting in October. Your advice makes sense, it’s best just to tell people straight up, people tend to come up with worse reasons for you not coming out if they don’t know the reality. Anyway thanks for the advice, I won’t hesitate to post on here if there are any problems, which i’m sure there won’t be!
Hi Jonah, congratulations on getting a place at Uni. It’s going to be great for you. I’m sure as Scott says that there will be times that you will break the rules and I’m sure that there will be times when you will have to stick to your ‘normal routine’ - and I bet your mates won’t notice you’re not there because they’re just too drunk!!
The friends you’ll make at university will be friends for life. There will be people there from all walks of life and with their own issues to deal with -it’s like living in a small town. When I was first struck with MAV I ended up with panic attacks as well and was on a forum for that and you wouldn’t believe how many uni students were on there worried about how to tell their new friends that they couldn’t drink/go out etc because of meds or because they just struggled with social situations. So please don’t worry to much - there will always be others worse off than you. You have your family and friends on here and I’m positive that soon you’ll have a new circle of friends too.
Have fun! Tracey
Congratulations on your University place (and for anyone not in the UK, this is a very good University too!). You must have done very well in your A Levels, which is an even bigger achievement considering what you have been through.
I work at a University, so can reassure you that not all students are party animals out drinking until 3am every night. Of course a lot of social activity can be centred around drinking, but there are also a huge amount of other social events/clubs/activities that are not. You might find it worth your while to join some of the societies/clubs on offer, and hopefully you will meet other like-minded people and make some good friends. I would also take the advice of the others and be upfront about your condition. It makes things simpler in the long run, and can weed out anyone uncaring/unsympathetic right at the start!
Congratulations on getting through school and getting into university. You obviously have a lot of stamina and determination so I’m sure you’ll do really well and also have a great time. A lot of people at university go there primarily to study rather than re-creating Animal House :lol: . I think you can still have fun without partying every night. The ones who are getting drunk will be that way well before 11 pm and they won’t even notice (or care) if you are drinking or not. There are also all sorts of clubs and societies which meet during daylight hours and don’t drink.
The other thing is that you may well ‘grow out’ of your migraine and/or they may lessen in intensity and frequency over time. Migraine does change over time. My brother had horrific migraines in his mid teens and then they just…went away. He’s 43 now and hasn’t had a migraine in decades.
