• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Ketotefin in Eye Drop form (for those with MCAS/allergies)

Gingergrrl

Senior Member
Messages
16,171
@Strawberry I just thought of another analogy for people who don't understand our reactions to smells. You know how you can get a song "stuck in your head" long after the music is over and it can replay in your head for hours?

That's what it's like with the smells, they remain stuck in my brain for hours after the original source is gone, just like the song. (Of course the song is benign and my reaction to smells can lead to anaphylaxis at the very worst extreme) but kind of the same concept?

I've been trying to create analogies for people who have never experienced this weird phenomenon. My respirator mask arrived today but as soon as I put it on, it smelled like very strong vinyl and I felt like it was suffocating me with no air coming through so don't think it will work (although in an extreme emergency situation I may try it) and it was very inexpensive from Amazon.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
My respirator mask arrived today but as soon as I put it on, it smelled like very strong vinyl and I felt like it was suffocating me with no air coming through so don't think it will work (although in an extreme emergency situation I may try it) and it was very inexpensive from Amazon.

Which one are you using? I got a Vogmask recently from Amazon - it has a carbon filter and exhale valve and comes in nice colours. BUT it does smell weird - sort of sweet and makes me feel so hot and bothered. I am just using it for dust issues - we are moving house soon and everything to me is dusty as my dust allergy is so bad right now and then I cant breathe properly all day with one small exposure. I thought I might use it for being outside in an emergency, but don't think I can keep it on for long - its hard if you already have breathing issues tolerating this kind of thing.

Im autally really worried about the dust and the house move - no idea how this will be. Literally everything has dust on it - even INSIDE cupboards. There is nowhere else I can go while the packing is done (we are doing the packing ourselves). The new house should be a lot easier for me - one level and smaller house and small garden and very near town - right now our house is tow levels, large and very rural.
 

Gingergrrl

Senior Member
Messages
16,171
@justy congrats on moving although I empathize with how difficult it is. We are about to move for the third time in July (but this time to another unit within our same bldg.)

We had a major flood and were at a hotel for 2 wks in May and then at my parents house which is our best option but lots of dust and mold here. It looks like we can't move into new unit until mid July now which is a bummer.

The mask is by 3M and a dear friend of mine recommended it and it worked great for him and he wore it for a whole week as his MCAS got really bad but it didn't work for me and I am going to return it.

It has a strong vinyl/VOC smell and last night it triggered a severe reaction for me b/c I was trying to breathe deeply while wearing it (only for a few minutes) but that was enough.

I felt it was suffocating me and I struggle to breathe anyway so am probably not a candidate for a mask. You said yours had a carbon filter and an exhale valve? I will look up Vogmask on Amazon b/c mine did not have either of those things and I felt like there was no way to inhale or exhale with it on and I was just holding my breath.

We also had a horrible heatwave for a few days and my parents house does not have a/c so we bought a fan but it seems to just be blowing the dust and pollen around and making it worse. Right now I am reacting more to the smells, dust, and hot weather than to actual food (which is different for me!)

I cannot wait until July when we can move. So few people can grasp this issue, it is nice to talk to you about it!

ETA: just looked up Vogmask on Amazon and its 100% different than what I ordered and might try it. Thanks for the info.
 
Last edited:

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Some people like the personal air filters that you wear around your neck though I have no personal experience with them:
AirTamer's Advanced Ionic Technology emits a constant stream of healthy negative ions that force airborne pollutants away from your personal space giving you a 3 foot sphere of cleaner, healthier air around your head.
31lMHetFrLL.jpg


https://www.amazon.com/dp/B00KSVJH5..._m=ATVPDKIKX0DER&pf_rd_r=G66RM6KYKVNNV351Y39Y
 

Gingergrrl

Senior Member
Messages
16,171
Thanks @Sushi and I had not heard of this product before and will look into it as well. If anyone on PR has ever tried it, I'd love to hear how it worked for you. Thanks!
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
@Strawberry I just thought of another analogy for people who don't understand our reactions to smells. You know how you can get a song "stuck in your head" long after the music is over and it can replay in your head for hours?

That is a great analogy! Maybe even add that you can hear that tune playing in a car 2 blocks away, while no one else near you can hear it. (hyper sensitivity to an odor no one can smell)

That is GREAT that you can wear contacts with those drops. I haven't been able to wear contacts in 25 years. I probably won't start wearing contacts now, but I really want to go find some now. My eyes have been burning far more lately, which leads me to another thread that I will start.

@Sushi thank you for that link, that looks very positive! I can use that here at the office and in my car. Might just kill two birds with one stone, and for 1/5 the cost! The description doesn't say anything about VOCs, but there is a review that says this "I am, however, grateful for the help it afforded me when I used it for the first time on an airplane flight, and have used it since in other situations, and it's very effective. I have many allergies and sensitivities to environmental chemicals, so it's been very useful and most appreciated." So I am very hopeful!

I just need to get off my duff and do it. I have been complaining of VOCs here at work and petroleum fumes in my car for a while. Time to just do it.
 

Gingergrrl

Senior Member
Messages
16,171
That is GREAT that you can wear contacts with those drops. I haven't been able to wear contacts in 25 years. I probably won't start wearing contacts now, but I really want to go find some now. My eyes have been burning far more lately, which leads me to another thread that I will start.

I would be curious if the Zaditor eye drops allowed you to wear contacts again? (assuming histamine is part of the problem with your eyes.) I had worn contacts since I was about 14 yrs old but also reached the point that I could not wear them anymore and tried every eye drop known to man (all prior to knowing I had subclinical MCAS at that time.) At present I am alternating the Elistat and the Ketotefin (Zaditor) eye drops and I was able to wear contacts for 4-5 days in a row for the entire day while we had out of town relatives with no issues which was shocking. I also use a saline solution that is 100% preservative free so once you open the bottle, if you don't use it in 15 days, you have to throw it away.

I still have not dyed my hair in about 1.5 years b/c I remain fearful of the hair dye triggering anaphylaxis (even though it is a natural dye without ammonia or peroxide, etc.) I'd have it done at home to avoid breathing in the other chemicals at a salon but once it is on my head, if I get the allergic reaction, am not sure what to do! I have found brands of make-up (like Ecco Bella) that are fragrance free and do not contain any FD&C dyes so I can wear contacts and make-up again but it is maddening not being able to dye my hair. My husband thinks it is not worth the risk (love is blind LOL) but I know that some day I will attempt it anyway.

Nothing though improves the reaction to strong smells and once exposed, I can become confused/agitated very quickly in addition to them burning my eyes, throat and my throat starting to narrow with thick phlegm. So I try to avoid them as much as possible which is why I have not been able to live in my own apt since that stupid flood on 5/4. The reconstruction, especially the new flooring, carpet and paint will not dissipate even with the ozone treatment. I cannot tolerate more than a few min in there so am stuck until our new unit is available in July. VOC's seem to stick around for life (for me) and never dissipate while others don't even smell them which is so odd to me.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Right now I am reacting more to the smells, dust, and hot weather than to actual food (which is different for me!)

Funnily enough this year I am reacting more to dust, hot weather and pollen - I have weird feeling this is IGE allergies or that the antihistamines that I take every day are somehow making my IGE allergies worse - I have heard thi is possible.

it is maddening not being able to dye my hair. My husband thinks it is not worth the risk (love is blind LOL) but I know that some day I will attempt it anyway.

Me too - haven't dyed my hair for over two years and would dearly love to. Bought some natural henna - nothing else in it and still too scared to try, as you say what if we react - shave off all our hair? I thought of trying some henna on my hand first to see - but that is only a tiny amount...I cant even get my hair cut be a decne their dresser - makes me sad.

The reconstruction, especially the new flooring, carpet and paint will not dissipate even with the ozone treatment. I cannot tolerate more than a few min in there so am stuck until our new unit is available in July. VOC's seem to stick around for life (for me) and never dissipate while others don't even smell them which is so odd to me.

This was a very important consideration with moving, minimum work doing in new place is a must for me. We will put in a new bathroom, but need to be very careful with anything offgassing - I start getting myoclonic jerks and neuro symptoms and breathing issues worsen. We would like new wooden floors, but will have to be very careful - cant use glue or underlay or get boards treated with antifungals etc. we also need a new couch - but the price of organic natural ones is so high!! and we need a new mattress - same issue - we can find one, made from Welsh wool and other natural product, not sprayed with fire retardants, but the cost!
 

Gingergrrl

Senior Member
Messages
16,171
@justy I am reacting badly to dust and heat this year too but our mini heatwave is over for now and back to the cooler weather. The antihistamines really help me (whether IgE or mast cell related) in my case.

Re: hair dye, my MCAS doc many months ago told me to try it b/c no mast cells on the hair itself (but of course on the scalp and breathing in the fumes!). He said just try on a tiny piece of hair and see if I react etc b/c no way to predict. I just know how badly I react to food dyes and this is a dye so am very hesitant to risk it!

I have a woman who comes to my home to cut my hair who could apply the dye but the thought of getting anaphylaxis or allergic reaction and frantically having to wash it off and scaring her also makes me hesitant.

It's a natural brand from Whole Foods that I've used with zero issues for many years (it's not henna) but still feel it's too risky from this damn disease!

Re: moving, we had the perfect apt prior to the flood in the unit above us on 5/4. The bldg took complete responsibility and placed us at a hotel but the damage was so extensive It required new ceilings, floors, sub-floors, carpet & paint. They said its low VOC paint but something they used will just not dissipate and I have not lived there since the flood.

My husband tried ozone but it did not change the smell for me so tried it a second time (with us not present during or for two days after and done safely etc). So we are moving to a new unit two floors above us but not ready until mid July. They will only be steam cleaning the carpets and cleaning with natural supplies that we will give them. So no new floors or paint so it should be okay like this one was pre-flood.

When do you move? I wish you the best and hope all the materials used are tolerable for you. Please keep me posted!
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
I received the Air Tamer today that Sushi posted above. I really want to give it a good few days before I give it a thorough review and thumbs up or thumbs down, but I wanted to post some first impressions.

I thought it was the size of a cell phone, but it is actually the size of a fat ipod. Nice positive.

I decided to test it with my statements, as the ink on them gives me a headache and they stink something awful. Just separating the statements with the Air Tamer on my desk seemed to reduce the smell, so I picked up the statements and put them directly under my nose. GAG. Then I put my Air Tamer next to my nose on top of the paper. It definitely changed the smell to something less invasive. So not bad. But obviously I can't put the Air Tamer directly under my nose all the time! LOL! And I know @Gingergrrl wouldn't be able to hold it up. But it appears if someone sat down next to me somewhere with heavy perfume, I could hold this up to my nose discreetly?

So I will wear it for up to a week and let you know the over all effect, both in the office and in the car.

I still want to try the Ketotefin eye drops though. Need enough energy to go to the drug store first...

Oh, and scrolling backwards, you both mentioned hair dye. I'm now almost pure white, and decided to embrace it. I've had too many reactions from hair color, so I gave it up. Besides I don't have a bathroom fan yet.

Also a late note to @justy definitely agree with you about hardwoods, but I don't know what newly installed floors would be like. Mine are 60 years old, so needed a good sanding and finishing. I told the guys I was allergic to chemicals, and they said they have a water based finish that smelled no different than low VOC paint. Between that and the low/no VOC Behr paint I bought, my house doesn't make me sick. I had to tell my mom to stop cleaning my kitchen on move in date as she was using Pine Sol.:depressed: But the paint and floor finish were fine after a few days.
 

Gingergrrl

Senior Member
Messages
16,171
Just need to vent since this is our thread for discussing allergic reactions! Have been staying with my parents until we can move into new unit in approx 2-3 more wks.

Well their neighbors on three sides all keep BBQ'ing and the smell of the charcoal or gas overpowers me and this time my throat swelled up like angiodema to the point it was hard to swallow my own saliva.

I of course took my rescue med Atarax and was ready to go back to our old apt and force myself to cope with the paint, flooring, carpet VOC's etc but my husband (who has been using it as an office during the day and staying w/me at night until we move) said that our new neighbors below us in apt are BBQ'ing too right now!

So am at the point we might just have to pay for a hotel. Am rarely reacting to (safe) foods anymore but smells are literally killing me. Last night I had to sleep in sleeping bag on a cot to be able to get air (my husband bought at sporting good store b/c we were so desperate and it was helpful but no one was bbq'ing last night.)

I am so hoping that IVIG could somehow tamp down whatever part of my system is in hyper-drive that triggers these reactions b/c they are destroying my ability to be anywhere and yesterday I had a bad allergic reaction to the sun snd only in it during car ride and transferring in wheelchair for five min.

It was really bad (legs turned bright red under clothing, severe headache & nausea, shaking, tachycardia etc... From the freaking SUN!) so I can't be outside in sun and need to be indoors during the day where there is no smell (which is exactly how our apt was before it flooded on 5/4).

This is maddening and all of my local friends either have stairs which I cannot climb b/c of wheelchair and no elevator and the one without stairs has cats so cannot stay with her. This is truly the most frustrating aspect of this entire illness and I am hell-bent on never using the EpiPen (even if it means paying for a hotel) b/c docs have told me it could trigger a heart attack.

Thanks for letting me vent. I don't know what people do who are worse than me or how they survive.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@Gingergrrl So sorry that its been so hard. I have heard from lots of people who have these kinds of severe reactions over on the masto facebook group I am in - a lot of knowledge there and kind people. Many people there also DO recover and the MCAD can get better.

What does your MCAS doc say about all this? do they think the MCAS is linked to the autoantibodies or is it secondary to infections or do they believe it is primary? either way sounds like they might need to try some different meds or regimes to get it under control. hugs xx
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
@Gingergrrl So sorry that you are having to go through all these scary situations! I can't remember if you said you had a VOC air filter or not? If not, here are two that I am looking at for the office. Not sure what the difference is, other than $30 and cosmetic. Reviews sounds very good for VOCs.

https://www.amazon.com/Brondell-Balance-Purifier-Carbon-Filtration/dp/B00WTEW4MW

https://www.amazon.com/Brondell-Source-Purifier-Carbon-Filtration/dp/B00WTJEP0G

For car trips it sounds like you might want to have your husband pick up one of those suction cup car window shades.

I hope your Drs can figure something out soon.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
Some people like the personal air filters that you wear around your neck though I have no personal experience with them:

31lMHetFrLL.jpg


https://www.amazon.com/dp/B00KSVJH5..._m=ATVPDKIKX0DER&pf_rd_r=G66RM6KYKVNNV351Y39Y

@Sushi @Gingergrrl @Gingergrrl After a two week trial, I have to give the air tamer a fail for MCAS. There were times I thought it was helping, and times I thought it wasn't. But yesterday was the toughest test. Someone came into the office wearing heavy perfume/cologne. I got a huge headache. There was also two times when I left the office that I could smell raw jet fuel for some reason. My throat immediately started burning/closing, until I got into the car. I don't know if the air tamer helped eliminate the burning/closing, but I was able to drive home. Seems to help in some situations, but I could never suggest this for MCAS.

So while I give it a fail, I probably will continue to use it (like driving or outside in heavy pollen season) but I'm convinced it helps little for VOC and chemicals.

I do love my Zatidor drops though. I wish I could use two drops in the morning as sometimes they still burn after one drop. But my eyes are so much more white, and the irritation is much less than normal. I'm glad @Gingergrrl started this thread!

(I also hope that both justy and gingergrrl are doing okay through the house moves)
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl After a two week trial, I have to give the air tamer a fail for MCAS. There were times I thought it was helping, and times I thought it wasn't. But yesterday was the toughest test. Someone came into the office wearing heavy perfume/cologne. I got a huge headache. There was also two times when I left the office that I could smell raw jet fuel for some reason. My throat immediately started burning/closing, until I got into the car. I don't know if the air tamer helped eliminate the burning/closing, but I was able to drive home. Seems to help in some situations, but I could never suggest this for MCAS.

Thanks @Strawberry for the review and if it didn't help you for perfume or the smell of jet fuel, then I am pretty certain it would not help me b/c my tolerance for smells is close to non-existent at this point. I appreciate the candid review that you would not recommend this for someone with MCAS.

I do love my Zatidor drops though. I wish I could use two drops in the morning as sometimes they still burn after one drop. But my eyes are so much more white, and the irritation is much less than normal. I'm glad @Gingergrrl started this thread!

Am thrilled that the Zaditor eye drops are helping you though! I have used two drops at a time (per eye) with no issue and assume this is okay. I've been mostly using my prescription eye drop in the morning and the Zaditor (OTC) drops before bed.

(I also hope that both justy and gingergrrl are doing okay through the house moves)

Thank you and our move went very smoothly all things considered. We moved to another unit within the same bldg so we did not need to rent a truck or anything like that. My husband packed all the boxes b/c I am not physically capable of doing this but on the day of the move my mom, sister and best friend helped transport all of our stuff from the hotel and my parents house to our new unit. We hired movers to move the heavy stuff like the fridge, beds, couch, etc, but they did it pretty quickly. I stayed in the new unit w/my friend so we could show the movers where to put everything and also be there when the workers arrived to transfer our TV and internet service.

Our new unit is the identical floor plan of our old one that had the flood except it is nicer b/c now we are on the top floor with no one above us so it is quieter and it also has sky lights in two of the rooms so it is much brighter. We never did all the stuff with the first unit that we'd planned b/c we were only there for nine months before the flood but this time we plan to buy patio furniture, plants, and little lanterns, etc, to make the two patios nice and make it more homey. My daughter is staying with relatives for the summer but when she comes home in 2-3 weeks, we decided to make origami cranes to hang in the apt to (hopefully!) bring good fortune, health and love.

I've never made them before but the infusion center where I will have IVIG next week has strings of thousands of them hanging by a huge two story window and they are just gorgeous and I thought it would be a nice project that our family could work on together. If we actually accomplish this, I will post a picture (in a few months). I feel like this move is a new start even though the flood and being displaced for over two months was horrible. We hope never to move again LOL.

Best wishes to @justy with your move!
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
Am thrilled that the Zaditor eye drops are helping you though! I have used two drops at a time (per eye) with no issue and assume this is okay. I've been mostly using my prescription eye drop in the morning and the Zaditor (OTC) drops before bed.

Thank you for this! I actually tried two drops this morning, and despite my sleep deprived blood shot eyes today, my eyes feel much better than they did on one drop. I keep forgetting to put night time drops in, so that is my way of justifying two drops. I never go off label without a Dr approving it, but hey, we need our mast cell stabilizers!

It sounds like your move went well, and the new apartment sounds wonderful! So glad to hear that, and being top floor, at least you won't get flooded from someone else's hot water tank or bathroom fixture leak.
 

Gingergrrl

Senior Member
Messages
16,171
Thank you for this! I actually tried two drops this morning, and despite my sleep deprived blood shot eyes today, my eyes feel much better than they did on one drop. I keep forgetting to put night time drops in, so that is my way of justifying two drops. I never go off label without a Dr approving it, but hey, we need our mast cell stabilizers!

@Strawberry Am glad that Ketotefin eye drops are helping! I know you said you never go off label but wanted to let you know that both my ME/CFS doc and also my MCAS doc said that with when someone has MCAS, you titrate the meds to the needs of the individual patient which may far exceed what a normal person may take. A normal person would take one Zyrtec per day for seasonal allergies but my MCAS doc has patients who take 4-5 Zyrtecs per day. I only take two per day but was using that as an example. Am not giving you medical advise, and you should absolutely do what you are comfortable with, only that both docs told me that with MCAS, all bets are off and you titrate to the needs of the patient.

It sounds like your move went well, and the new apartment sounds wonderful! So glad to hear that, and being top floor, at least you won't get flooded from someone else's hot water tank or bathroom fixture leak.

Yes, thank you and the new apt is much better. There are no odors or smells, it is cleaner, brighter, quieter, and as an added bonus our old unit had ants that we could not get rid of in nine months and this unit has no ants!!! The only casualty was our mattress but I finally found a solution and we'll have our new mattress by next week.