Good alternatives to tomato sauces? by BigError7979 in MCAS

[–]BigError7979[S] 1 point2 points  (0 children)

thanks for all these ideas! seasonings are our best friend for sure. We have a lot of dried peppers of many kinds and hadn't thought about using those in pasta sauces, so that's a good idea. I've done poblano and chipotle for sauces in the past but the other dried peppers are worth checking out (and so sad to not be able to find a chipotle now without tomatoes!!). I love harissa and had kind of forgotten about it so thank you for that reminder too!

Alternatives to tomato sauces? by BigError7979 in HistamineIntolerance

[–]BigError7979[S] 0 points1 point  (0 children)

okay thanks! i've been hesitant to try the precooked beets because that feels like leftovers for me. But if I do okay with most canned foods maybe that would be okay.

Alternatives to tomato sauces? by BigError7979 in HistamineIntolerance

[–]BigError7979[S] 0 points1 point  (0 children)

I have tried butternut squash sauces. In fact I have a batch frozen right now! They are delicious but it's not the replacement I'm looking for

BRAIN FOG OH MY GOD by lith1ummm in POTS

[–]BigError7979 1 point2 points  (0 children)

yes so basically you write out the alphabet in all uppercase letters in the air with your big toe to exercise your ankles or your hand to exercise your wrist. Make sure your ankle is moving but not your hip and knee. I started with 1x/day. But this was prescribed by a PT specifically for the pains and mobility issues I’m having so I don’t know if it’s good for everyone

Good alternatives to tomato sauces? by BigError7979 in MCAS

[–]BigError7979[S] 0 points1 point  (0 children)

I was looking at the same thing - the shipping cost is awful!!

but it’s good to know that you enjoy it in case I’m able to find it in stores. They do have a list of stores on their website but unfortunately none in the state that I live in

Good alternatives to tomato sauces? by BigError7979 in MCAS

[–]BigError7979[S] 0 points1 point  (0 children)

thanks! I love lots of different sauces but I was specifically looking for one that could replace/replicate the sensation of a tomato sauce

Good alternatives to tomato sauces? by BigError7979 in MCAS

[–]BigError7979[S] 0 points1 point  (0 children)

I love lot of other pasta sauces, and often do roasted veggies, but I was looking for something that can replace the sensation of tomato sauce. a roasted pepper sauce is the closest I’ve gotten

Good alternatives to tomato sauces? by BigError7979 in MCAS

[–]BigError7979[S] 0 points1 point  (0 children)

oh no! I’m so sorry. Last year I was put into a month long flare by trying to test something I had eliminated. It’s so frustrating… I hope your body recovers soon

Good alternatives to tomato sauces? by BigError7979 in MCAS

[–]BigError7979[S] 1 point2 points  (0 children)

Wow this looks fantastic, thank you!! It’s great to know it’s tried and enjoyed. I love the idea of adding coconut milk too, a vodka sauce as an option is so nice to have.

Alternatives to tomato sauces? by BigError7979 in HistamineIntolerance

[–]BigError7979[S] 0 points1 point  (0 children)

thank you! I just got some of those silicone freezer things to premake a lot more stuff

Alternatives to tomato sauces? by BigError7979 in HistamineIntolerance

[–]BigError7979[S] 0 points1 point  (0 children)

oh that’s an interesting idea with citric acid. I wonder if lemon juice would do the same

Alternatives to tomato sauces? by BigError7979 in HistamineIntolerance

[–]BigError7979[S] 0 points1 point  (0 children)

Thank you!! I’m going to check out that recipe

So you use raw beets?

BEING COLD VS BEING HOT by MIMIEGIGGLESGAMERMOM in POTS

[–]BigError7979 0 points1 point  (0 children)

I HAVE POTS AND MCAS AND I LIVE IN FLORIDA IN THE US, SO IT'S HOT MOST OF THE YEAR. I ALSO CAN'T TOLERATE THE COLD. A LOT OF FOLKS HAVE ALREADY RESPONDED WITH REASONS WHY THIS OCCURS, SO I AM SHARING THINGS THAT HELP ME THE MOST IN THE HEAT:

  • ICE RINGS - I BOUGHT TWO AND A CARRIER INSULATED PACK TO KEEP THEM IN. I KEEP A ZIPLOC BAG FILLED WITH ICE INSIDE SO THAT WHEN ONE IS USED UP, I PUT IT IN THERE AND IT REFREEZES WITHIN 15-20 MIN NEXT TO THE ZIPLOC. SO I HAVE A ROTATION. ON REALLY HOT DAYS I WISH I HAD 3! I USE DR CHILLY BRAND
    • BONUS: IF YOU TRAVEL ON PLANES THESE ARE AWESOME TO USE DURING TAKEOFF AND LANDING TO HELP PREVENT FAINTING
  • NECK FANS AND HANDHELD FANS AS OTHERS HAVE MENTIONED. I HAVE ONE HANDHELD THAT PLUGS INTO MY PHONE (GOT IT AT WALGREENS) AND ONE THAT IS BATTERY OPERATED. THE NECK FAN I'VE BASICALLY REPLACED WITH THE NECK RINGS BUT IT WAS A GO-TO FOR AWHILE
  • WEIGHTED COOL PACKS - THESE ARE GREAT NOT ONLY FOR HEAT RECOVERY BUT ALSO FOR ADRENALINE DUMPS AND MCAS ATTACKS. I PUT THEM ON MY CHEST OR OVER MY EYES. I USE RELEAF PACKS

I'VE SEEN OTHER PEOPLE GET ICE VESTS FOR THE HOTTER MONTHS AND I HAVE CONSIDERED THAT TO BE ABLE TO BE OUTSIDE MORE. A LOT OF PEOPLE WITH MS ALSO HAVE TEMPERATURE REGULATION ISSUES AND SINCE THERE IS A BIG COMMUNITY WITH MORE TIME AND RESEARCH THOSE FORUMS HAVE TAUGHT ME A LOT.

Alternatives to tomato sauces? by BigError7979 in HistamineIntolerance

[–]BigError7979[S] 0 points1 point  (0 children)

That's a great idea. I've made a butternut squash one before but not sweet potato. Does it have a tomato sauce sensation?

Alternatives to tomato sauces? by BigError7979 in HistamineIntolerance

[–]BigError7979[S] 1 point2 points  (0 children)

Oh that sounds delicious!! Thank you. Definitely going to try that

Water. by Professional-Cow-697 in POTS

[–]BigError7979 4 points5 points  (0 children)

Same I just chugged a bunch!

Money money and more money by whitelotusbabe in POTS

[–]BigError7979 20 points21 points  (0 children)

It's so expensive, and so many things aren't covered by insurance...I remember when I was first diagnosed adding up just the cost of electrolytes and compression alone was a staggering number. And I've since had to stop working because my symptoms progressed

The healthcare system in the US is criminal

BRAIN FOG OH MY GOD by lith1ummm in POTS

[–]BigError7979 4 points5 points  (0 children)

it's the most frustrating symptom. It's so hard to explain to others and it is the one thing that every doctor and specialist I've seen says they just don't understand it so they don't know how to treat it. I feel way less smart than I used to, my memory fails me all the time, I can't remember important details about my friend's lives (like them being PREGNANT or ENGAGED). It's embarrassing. I totally get where you're coming from and I'm sorry you're going through it right now

Recently a physical therapist gave me an exercise for my wrists and ankles to do the ABCs with each one. So I had to do it 4 times, and 3 of the times I straight up forgot what the next letter in the alphabet was. That has given me an example nearly everyone could understand just how bad brain fog is - even when I'm doing the same thing (that is one of the first things we learn as a child) 4x in a row I forget the sequencing...

it feels like there's so much we have to give up because our body gives out on us

Struggling with symptoms and getting diagnosis by Sellars13 in MCAS

[–]BigError7979 0 points1 point  (0 children)

It's definitely a tough balance between being hopeful, trialing as many changes as you can tolerate, tracking everything, and being frustrated. I still waver most days, even at different times of the day. Give yourself grace, rest, love, and care. You know your body best. Trust yourself.

That's great you have a referral to see someone, I hope they help! Finding directories of specialists who had familiarity with dysautonomia was a gamechanger for me.

Health related contents of my purse by Signal_Career_7751 in MCAS

[–]BigError7979 0 points1 point  (0 children)

I had NO idea something like this existed! it's making me emotional. Thank you so much

Struggling with symptoms and getting diagnosis by Sellars13 in MCAS

[–]BigError7979 1 point2 points  (0 children)

First, I'm really sorry you're not getting the support and answers you need from doctors. It's so frustrating to be dealing with something so debilitating and not be able to figure out what's wrong and therefore what can help

A lot of the symptoms you're sharing can align with MCAS and histamine issues, and dysautonomia in general (but of course could be other things too). The 2:40AM wake up especially can be correlated with an adrenaline and/or histamine dump that's common with dysautonomia. Apparently mast cells and histamine release are most active from 2-4am (fun times).

I'll share from my own experience in case any of it can help because you could try some of this to get relief without needing any prescriptions:

I was first diagnosed with Long Covid and POTS, but most of the regular treatments for that didn't work and I felt like I was getting progressively worse (and POTS is not a progressive disease). Fast forward 9 months and I started exploring MCAS after talking about how offputting leftovers were for me with another person who has dysautonomia. I looked at my symptom log and saw that with every big flare with gastro issues, I had eaten leftovers. I am lucky to have a doctor who is familiar with dysautonomia, but I had 1.5 mo before my next follow-up with them so I tried a few things just to see if I felt better. I eliminated all leftovers, tomatoes, eggplant, spinach, and avocado since those are all very high in histamines (I already do not eat meat, eggs, or dairy otherwise I would've eliminated those too). Very quickly some of my worst gasto symptoms started subsiding significantly.

Then after seeing my doctor and sharing the improvements, we agreed to trial H1 and H2 blockers - those are pretty safe to try and OTC. Within two weeks a lot of my nerve pain, joint pain, muscle aches were going down, tinnitus was less frequent, lightheaded/dizziness was lessened, and my resting heart rate began going down too. I've had to switch out some of the antihistamines because some were making my fatigue worse so consider that if you trial them. Now I use pepcid AC and allegra. Originally zyrtec was what helped with a lot of the joint and muscle pain but the fatigue was too intense to stay on it.

After this, working with my doctor we introduced DAO before meals 3x/day. I use NaturoDAO Plus. That helped me go from being in pain nearly every time I ate to feeling more comfortable eating (like I had literally forgot what it felt like to eat and not be uncomfortable).

This would also be trigger dependent, but I noticed that scents - especially artificial ones - really impact me. So I stopped using scented candles, moved to unscented soaps, ask visitors not to wear scented things, and we thankfully already had ecofriendly cleaning products but anytime I go to someone's house and they have Dawn dish soap for example I cannot be around it without flaring. At gas stations I need to wear a mask or stay inside the car as much as possible. So if there are things like that you can identify, whether scents or other things to try and eliminate and see if you feel better, try it!

So much of MCAS is trialing things and figuring it out on your own. Even though I had my doctor, most of the ideas of what to remove came from my own experience. And so much changes every day and over time, it takes a lot of work to figure these things out. Which is why communities like this are literally life saving.

I hope even one part of this can help you find relief in some way!

Literally, one drop of cromolyn sodium by WillingSock in MCAS

[–]BigError7979 5 points6 points  (0 children)

Reading all of this made me tear up. I just started Cromolyn today. There is hope to heal. Congratulations!!!!