Multiple Chemical Sensitivity/ Fragrance Intolerance

Sam_91

Hey I wonder if others in here also experience an intolerance to Fragrance?
It appears to be the synthetic derived kind mostly from petrochemicals (as does petrol/gloss/paints/adhesives/solvents mess me up also)

Ive had it since around 2016 , im 33 years old but it just gets worse and worse, to the point if i walk along the street i can identify problematic homes that are very fragrant and instantly hurt my head and smell strong to me

The head pain and pressure is almost instant around my triggers, but the longer exposures 10 minutes+ or even longer can leave me with symptoms for days it just seems like obvious maths and the amount of these chemicals in my body.

Triggers:
Petrol / fuel
Paints/ spraypaint
Glues/ adhesives
Perfume
Aftershave
Deodorant
Air 'Fresheners'
Scented Candles
Laundry Detergent/ Fabric Softeners
Hand Washes
Hand Creams
Other cosmetics

Symptoms:
Difficulty Breathing, Brain Fog, feeling closer to loss of consciousness (close to how you feel before fainting) , Head Pain, Head Pressure, Migraines, Double/blurred Bad vision, Involuntary movements, Rigidness in legs/limbs, Slurred speech, Joint pain, muscle pain, Zoning out almost like focal seizures,

If no encounter with triggers i dont get symptoms ,
I live in isolation almost and only meet people outside and have to navigate the world using varying levels of protection ranging from earloop masks containing carbon, to disposable form fitting p3 masks with carbon and even cartridge filter respirators for travelling on buses/ trains
Also i use barriers to sit on seats on public transport/ outside. From my experience anything mylar or aluminium layer works best as the fragrance /chemicals do not pass through it, beforehand my clothes would smell through bottoms and saturate underwear even
Learned a lot as it got worse, very isolating difficult condition lots of weird stares and laughs at me all the time , and dont get to see anyone i just went a whole 4 months not seeing anyone i know

Sam_91

I should also include Cigarette smoke and fire/burning / smoke in general too, makes my lungs feel like they are on fire and cause me the same symptoms as fragrance/chemicals do

Albus_Scope

Heya @Sam_91 and a warm welcome to the community.

I'm autistic so often have issues with smells seeming a lot stronger than they are and causing bad headaches, but nothing like you are mentioning. Have you sought advice from your GP for this?

Unfortunately we can't offer any medical advice, as per the house rules, but we can at least offer some support.

Sam_91

Hey @Albus_Scope

Im also autistic as well as ADHD however this is not a sensory issue , this is a physical issue I know this well as i do have sensory issues with sound however they dont cause me the same level of pain or other health issues

Ive just been fobbed off by GP who kept saying migraines and giving me pills, the last one they tried me on was Toperimate which gave me seemingly permanent photophobia/photosensitivity , on some long waiting lists of 16 months
Im not looking to get health advice on this as ive looked into it a lot myself already I was just seeing how common it is or if there are many others with it outside of support groups that exist for it online

Thanks

OverlyAnxious

I am also very sensitive to smells - but again, not to the extreme that you seem to be.

In my case, I think some of the physical issues I get stem from my own reaction. For example, I will try to limit breathing in the smells, only using very shallow breaths, and sometimes holding my breath altogether until I can get into fresher air. This obviously has the effect of making me lightheaded and close to fainting. But I do believe it is caused by my reaction, and not directly from the smell.

I do also get longer term issues such as headaches and vision issues if I am trapped in a smell for hours. For example, bathroom sealant or some types of paint/varnish. (Luckily I have found one type of wall paint that I can tolerate). And also the plastic smell from new appliances etc.

Unfortunately, I live in a small flat, and the smells from the neighbouring flat have an impact on my daily life almost every day now. I have tried to block up as many gaps in the walls as I can find. But that has not helped much. Other people just say I should add more smell (albeit a pleasant one) but they do not seem to understand that even a pleasant smell is intolerable when it is strong, and worse at some times of day than others as well.

Sam_91

@OverlyAnxious have you tried caulking where the pipework is in kitchen/toilet/bathroom as thats the most common place for entry, i successfully completely blocked my next door neighbors cig smoke in a tower block flat after i did this

OverlyAnxious

https://forum.scope.org.uk/discussion/comment/1072780#Comment_1072780

Yes. I even used waterproof sealant which made me ill for several days afterwards, because I hoped that would solve the problem long term. But it's still coming through floors and/or walls sadly.

Sam_91

@OverlyAnxious ah right im not sure then thats a pain , buildings can vary in terms of structure i know there are gaps in mysterious places in some builds

As for what you mentioned earlier :

"In my case, I think some of the physical issues I get stem from my own reaction. For example, I will try to limit breathing in the smells, only using very shallow breaths, and sometimes holding my breath altogether until I can get into fresher air. This obviously has the effect of making me lightheaded and close to fainting. But I do believe it is caused by my reaction, and not directly from the smell."

There is actually a condition called ILO where your vocal chords will enlargen and make it difficult to breathe and cause lightheadedness etc I noticed ever since i started to use tight sealing carbon containing masks this went away i thought i was agrophobic or something because i kept experiencing the feeling i was going to faint around people but now it doesnt happen at all

OverlyAnxious

https://forum.scope.org.uk/discussion/comment/1072843#Comment_1072843

Funny you mention masks, as I can't use those at all myself now. I did keep trying to use one for shopping when the covid mask rules came in, but the smell of the mask and even my own breath used to stop me breathing, and caused even more dizziness etc.

I haven't used a mask, or a visited any public place, for around 4 years now. Lost the ability to drive back then due mainly to increasing vertigo/dizziness and ever-weakening digestive system, and can't see any way back to that now. I do also have agoraphobia, but not the type that people think of immediately. Mine is about being trapped in any place or any situation, so I experience it inside my own home as much as I did when I could still travel locally.

Sam_91

@OverlyAnxious actually during covid wearing a mask or face covering would invoke the dizziness etc even worse, but thats because if the mask doesnt contain carbon it will not block VOCs such as perfume/aftershave/air freshener, so i was experiencing my breathlessness from fragrance then the restriction of wearing a mask so i was close to fainting a few times, but ever since i use the correct type i do not experience this anymore
I have fainted twice so i am very familiar with the feeling of what is about to happen before you do but that happened from fasting and standing too long

I also experience agrophobia which is why i find this so difficult because my old strategy was to go outside every single day even just to buy some milk or bread or whatever but ever since this got worse, i have to choose between going out and getting ill, going out and getting people start on me for wearing a mask (Other week i got followed by 2 guys in a car for ages harrassing and filming me) its a nightmare