Newbie struggling to find right diagnosis :(

Hi, I’m sure many of you are familair with my topic of discussion, going around and around and feeling like you’re constantly getting worse but not getting any closer to an answer.

I wanted to run my story and symptoms by you to see if you think I might have vestibular migraine/MAV. It’s really hard to know if all my ailments are caused by the one thing or if they are separate issues.

Firstly, I’m 24 and from Australia but have been living overseas for the past 2.5 years in NZ, Canada and now London, UK. I have had a history of sterotypical migrane runs in my family from about 15 where I get a classic migraine aura where my vision goes fragmented, I can’t see, or think, one side of me goes numb and tingly, I can’t speak and then I get a whopping headache and am in bed for the entirety of the day. I wake up feeling washed out with a residual headache but usually can function normally the next day. I got these mainly when I was on the OCP (pill) to control my periods and whilst I was at high school as I was under a bit of stress with exams and results and studies. After I left school I remained on the pill until Jan 2011 but I only had a few migraines, maybe once every 6 months I would get one. I saw a neurologist, I got presrcibed a tripan Zomig but didn’t find much relief from it. I lived with them as they didn’t bother me that much and rarely interferred with my life.

I’m not sure what to do anymore, I’m at my wits end and I just wanted to make a post to see if anyone can relate to my symptoms and whether it sounds like MAV/vestibular migraine or whether it might be something else.

Thank you so much for reading my novel.

I will go back to being tired, emotional, dizzy and drained now. Hope to hear from someone soon.

Katie x

I came off the pill in Jan 2011 after I left Australia to go travelling. The last typical migraine I had was September 2010. Since then I notice I get headaches/migraines associated with my mensutral cycle, I especially get them bad around my period and a few days after when my hormones are all over the shop. These headaches are probably WORSE than the migraines I used to get. I feel physically sick with them and they get perpetually worse as the day goes on and sometimes last for 2-3 days at a time. I also get a really tight/sore/stiff neck at the same time.

In Feb of this year I woke up with vertigo, I was diagnosed with labyrinthits (as I’m sure we all were!) and was told it would go away. I waited 3 or 4 weeks went back to the doctor and said it wasn’t going away, he referred me to an ENT but it was a 10 week wait. During this ten weeks things changed, my vertigo subsided but I was left feeling constantly off balance. Pretty much 24/7. I felt like I was rocking, swaying, felt nauseous, headaches started increasing, anxiety and stress levels were through the roof.

My main symptoms are
Dizziness/off balance
Vision disturbances (floaters, specs, visual snow, static vision, little squiggly lines, dots that dart around my eyes)
Tight and sore neck which is really tense and bothers me quite a bit, headaches are always worse when I have this
Body aches and pains, changes with the weather but always feel like I have the onset of flu but nothing eventuates
Tinnitus which started after the first attack of vertigo, in my left ear mainly
Sensitive to noises now, don’t like listening to music in my left ear as it increases tinnitus
Fatigue!!! Ahhh so tired and worn out, I manage to contine working but I come home and am knocked for six
Brain fog, feel out of it like I’m not connected to my body and it’s hard to think clearly.

Some of these were already present BEFORE the dizziness such as some of the eye disturbances I already had, the neck pain, body aches and pains and the brain fog on occasions. But since I’ve got dizzy these symptoms are so much worse to the point where they now feel like a problem rather than just a bit of an inconvenience.

I saw my ENT last wednesday he diagnsoed me with Menieres… which I kind of just laughed in my head about because I really don’t think it is Menieres as I don’t get sudden drop attacks of vertigo, it’s just a general feeling of off balance and struggle to do things that challenge my vision or balance like looking around me quickly, supermarkets, driving, watching movies with lots of visual stimuli.

He said some of my symptoms don’t add up DUH and to get an MRI then I called my GP and told him about all the other problems I was getting and he said it sounds neurological and to come in and see him so I could be referred to a neuro (another almost 3 month wait probably).

I quit caffeine, chocolate, cirtrus fruits, bananas, nuts and most of the migraine triggers but being a vegetarian I find it very hard to get the nutrients I require when I am cutting out cheese, yoghurt, avocados, coconuts, nuts as these are my main foods! To be honest, I haven’t felt much of a difference but maybe I’m not being strict enough?!

I am seeing a physio for treatment on my neck but that has only just started.

I’m trying to eat well, exercise (although I’m just too tired most of the time), drink enough water and get enough sleep but sometimes I feel worse now than I did when I was 4 weeks in. 4 months down the line and I feel like I’m getting more and more symptoms and it’s becoming more and more debilitating. I’m depressed with my life because I can’t do anything anymore, I can’t go for a drink with my friends, I can’t think about starting a family or getting married, I can’t plan anything even for my weekends or after I get home from work because I can’t physicalyl manage anything either due to being dizzy, feeling sick, having a headache or just being way too tired.

Hi Katie

Really can relate to your story, it sounds like mine in many ways. I have/had all the same symptoms as you except the tinnitus and visual floaters. Feel free to read back through my earlier posts if you want to hear my story. Definitely sounds like VM. It took me 3.5 years to get to this site and get the correct diagnosis. I am currently on two migraine preventatives: nortriptyline and gabapentin at a low dose. See if you can get an appt with a neuro who understands VM. If you say which area you live then some people here I am sure will suggest a good neuro. Hopefully they will then put you on meds to help you get things under control x

Hiya did I you say you live in London? If so ask you gp to refer you to Dr Surenthiran at maritime Medway in Kent it’s not far you can ask for that and they have to either him he’s my Dr or Dr silver specialise in this they will be able to help you Dr S is a lovely man and very sympathetic. X