odors (cleaning products/body products/laundry detergent, air freshners etc

I am so sorry you are dealing with so many non-believers and can hear how frustrated you are. Migraine disease can take so much from us and have so many varied symptoms. Smells, lights, sounds and more can all trigger a nasty attack. It sounds like you are taking the precautions necessary to deal with these sensitivities. We have more information on living with olfactory (odors) issues here;
1) https://migraine.com/search?s=odors

Please know you're not alone in living with this - we're here for you and let me share a few thoughts while we wait for others to join the conversation. The first thing that comes to mind is seeing yet another doctor - a true expert who treats people with migraine and headache disease day in and day out. Let me explain . General neurologists may be fine doctors but have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. Many general neurologists who treat people with migraine and headache disease claim to be experts but that may not be 100% accurate. A true migraine/headache disease expert is board certified in headache medicine (not all neurologists have this additional certification) and treats migraine and headache all day, every day. I've found these expert doctors to have a tremendous knowledge base on migraine/headache disease and are well worth the visit. Here is more information on why these doctors are beneficial and where to find them;

2) https://migraine.com/blog/really-find-headache-specialist/
3) https://migraine.com/living-migraine/change-thoughts-new-care/
4) https://headaches.org/resources/healthcare-provider-finder/
5) https://migraine.com/living-migraine/how-to-find-a-neurologist-or-headache-specialist
6) https://migraine.com/living-migraine/hiring-right-doctor

Please let me know what you think and I'm happy to help, Nancy Harris Bonk, Patient Leader/Moderator (Team member)

Hi there - Thanks so much for sharing your journey with hyperosmia (also known as smell sensitivity). As a person who also lives with this, my heart feels for you and the pain you've endured trying to avoid scented products and places. What what you've written, it sounds like you are doing everything in your power to help reduce exposure to scents that may bring on a migraine.

While your doctors may not know the cause, are they at least open to hearing that scents are an issue for you? When I think back on my own experience, I've personally found it difficult to advocate for my scent sensitivity. For example, many times when I go to the eye doctor, they will wipe down the equipment with alcohol wipes and then ask me to place my face into the machine before it is able to completely evaporate. For most people, I don't think this is an issue. But with my migraines, doing so can result in catastrophic results, including eye pain, nausea, head pain, brain fog, and so much more. I think part of the trouble is I don't want to "make a fuss". Have you felt this way in the past?

Wishing you well, and hope to hear an update from you soon. While there is no cure for this (as far as I know, would be great if there was!), what we do have control over is how we communicate our sensitivity to others and what scents we bring into our own home. It's not much, but it's something.

Best,
Cody (Team Member)

so sorry to hear about these challenges- and how long you e been dealing with them. Nancy did an amazing job with giving you resources and support. I just wanted to also connect you with one of our incredible community members who lives with extreme sensitivity to fragrances and odors. She’s a pro at managing this challenge and all that comes with it socially and otherwise. She goes by Annzie and I’m sure she’ll respond to you here. We are all here for you. Warmly - Holly (team member)

diya, Cody Leach My reply went to the wrong person. Sorry about that, Cody. Diya, I am also like you, one whiff and down the rabbit hole. I really hate when cars drive by with those plug-ins and their windows are rolled down. Bam, there we go! Walking my dog has also been a problem thanks to dryer sheets and exhaust. Often I forget my mask and a diesel will get me or a dryer sheet. Also smoke. Since I live in a small town, the farmers surrounding us are in the county and they are burning constantly!

Have you ever had a brain injury or stroke? I'm pretty sure only a migraine specialist will understand this unusual aura.

We are definitely not alone! I have a friend, Teri, whom I met on My Migraine Team with similar problems, but her Achilles heal is cigarettes, vapes and pot smoke. She lost her job as a school teacher because of her issues. The children's clothes and back packs can set her off. Her neighbors smoke pot outside, they and move to the far side of their property, (closer to her property) to hide in the woods. Of course their smoke floats over to her property and attaches of her clothes drying on the line, so she has to wash them again. Her husband went over and told them that her wash day is Tuesday morning, so please, don't smoke on Tuesday. Wait until night time at least. What lengths we must go through to live with migraine!!

There's a theory I heard on Migraine World Summit in 2019... that migraine is actually a spectrum: mild migraines at one end, and severe migraines at the other, but we only recognize the severe ones due to the intense pain. The theory is that what we recognize as a regular headache might actually be a migraine at a low, low level. Using this theory, things we think of as "triggers" actually are not, but rather intense sensitivity to things like perfume because we are ALREADY in a full blown low grade migraine. Therefore, our strong reaction to just a whiff of perfume is actually happening because we're already sensitive due to this low grade migraine. Does that make sense? It really rang a bell for me! Even though my sensitivity started with a brain injury, I still think the theory works. Since research proves the more migraines we have moves us towards episodic, then on the chronic, and then daily, it actually makes sense that being in a constant migraine, even at low levels, would push us faster towards daily.

Don't give up hope. Perhaps like me you, need to wear a mask when in public. I use 3M Aura 9205. (I just caught that it's called Aura. Coincidence or God-cidence?!)

Try to make peace with our condition. Stressing makes it worse. My friend, Teri, says we're special.