“Now I do what’s right for me, not anyone else”

Sandip's story of osmophobia (sensitivity to smell) and finding what works for him

17th October 2023

My first migraine was in my 20’s when I woke up with, what started as, a rare headache but it got bad to the point of scary and I was physically, ferociously, sick for about 10 hours. They became a regular occurrence, starting with a headache or throbbing on the right side of my head followed by being physically sick all day.

I didn’t really tell anyone for several years. I just tried to deal with them, unsuccessfully, on my own. When I finally went to the GP I was having 18 attacks a month and really couldn’t cope. I had some success with triptans but the effectiveness waned and I struggled to find anything that worked for years. That was until I was prescribed a nasal spray which was a complete game changer. I get so sick that tablets come up but the spray stays in. It shows there are lots of medications out there, but getting access to them is another issue.

There was a point where I blamed myself for not asking for help earlier, potentially before they became chronic but hindsight isn’t always helpful and you never know what would have happened.

Avoiding social events

People talk about mental health much more now. I didn’t really think about how I felt before but sometimes I would just cry. A times I’d think I don’t want to be here, this is no way to live. I didn’t want to go out or to family functions. Friends would organise birthday dinners but my biggest trigger is the smell of frying onions so restaurants can be horrendous. Letting people down made me feel even worse. Food in general became a problem. In an Asian household onions are hard to avoid, but I was being sick so often that I became scared of eating and often didn’t.

Trying to find my triggers made was so frustrating as nothing seemed to help but new things would come out of nowhere. At one point my smell sensitivity went off the scale, anything from aftershave, perfume to scented candles. It made me feel even more of an outcast as I could walk past someone with perfume on and my day would be over.

Over the last few years things have improved and I’ve had a mindset change. My migraine has reduced in frequency to around 3 a month. It’s still up and down, and I can go out and be around all my triggers and be fine, other times I stick to my routine and do all right things and get a migraine.

My work has been really good. Before I told them I used to open the office at the same time as the cleaners and the cleaning smells would make me physically sick but I’d just work through it. Now I work from home, but if I go in they book rooms with ventilation for meetings, send memos for people to avoid wearing perfumes.

Tell people what you need

I’ve realised that what I go through isn’t worth trying to stick out social events, and now I do what’s right for me, not anyone else. I’m still sceptical about going out too much but I’ve realised I can sometimes be the blocker and actually most people are up for a conversation. I just need to talk more and tell them what I need, I’ll ask people not wear aftershave or strong deodorant and if they forget or something isn’t right, I’ll just leave. Now if my Mum is hosting, she’ll cook at 6 in the morning and open all the windows so the smell goes. If my wife is cooking, she’ll do a big batch cook when I’m out.

There’s lots of care out there. Try and talk about how you feel. Start conversations, ask questions.