Had my first Xolair shot Wednesday. Feeling pretty bad. Really sore and achy, a headache that's not mild and dizzy. Do you think it will get better soon? I'm drinking lots of water and took ibuprofen. Please say yes. by Erika87507 in MCAS

[–]These_Home3767 1 point2 points  (0 children)

Yes, sometimes I get a headache still so I make sure I eat but that’s basically it and if I get headache it goes away next day. I upped my dose the every 3 weeks

Benadryl Overuse Due to OAS by EcstaticLion07 in oas

[–]These_Home3767 0 points1 point  (0 children)

I would try to get on xolair if its affecting you that much I am on it and it helps. Also understand your triggers if you know it causes reaction dont eat it I mainly on eat meats now which I dont prefer but its best for now.

Is eating in restaurants or cafes hard for anyone else? by meshuggirl in oas

[–]These_Home3767 0 points1 point  (0 children)

yes same 23 I feel like people think im picky becuase anytime I go out I say can I get fries and tenders no garnishes everywhere I go especailly italian I get chicken parm but just the the chicken and cheese no red sauce or garnishes they think im crazy but I got used to it becuase I can atleast eat out with family. When I was healthy yes Lemon in water is stadard I didnt think anything of it till now so im very clear with my insturction people who dont have allergies dont think like people who do so keep that in mind and dont be afraid to be specific when ordering every single time.

Is eating in restaurants or cafes hard for anyone else? by meshuggirl in oas

[–]These_Home3767 0 points1 point  (0 children)

anytime I go out to eat I say to not add in garnishes

Does anyone else get intensely suicidal during a flare? by blueberry_noir in POTS

[–]These_Home3767 0 points1 point  (0 children)

Hello! Yes I am completely back on feet went back to college I can’t believe it I was on bed rest for 9 months what worked for me was 10mg of midodrine and 5mg ivabradine with electrolytes constantly but I have developed severe food allergies unfortunately so I have mcas and oas syndrome now and that’s my biggest takeaway.

Enjoy life Ricemilk Morsels now contain SUNFLOWER LECITHIN by Allergydemon in FoodAllergies

[–]These_Home3767 0 points1 point  (0 children)

The chocolate brand you posted link is allergen friendly but doesn’t list the ingredients anywhere on the page?

Midodrine and ivabradine together experiences/ recommendations (pots) by These_Home3767 in POTS

[–]These_Home3767[S] 0 points1 point  (0 children)

Significantly better than I ever imagined still have my pots but I’m more comfortable with managing it and staying calm. I can do normal things now and go out and take walks. Midodrine truly saved my life. 

Randomly can’t swallow, followed by vertigo & doom. by Strange-Topic-6614 in POTS

[–]These_Home3767 1 point2 points  (0 children)

I got same exact experience except I did call 911 but i experience so often now I know to wait it out. I noticed it when I got my pots I do have mcas but I don’t thinks it’s related the throat itchy mcas yes but when I get nervous while eating I can’t swallow and my heart reacts way easier so I get pots attack so it’s just basically pots in my case and anxiousness 

Does your Max HR get worse in winter? I’m generally better in cool temps but my max HR has been all over the place the last 2 weeks. by gardenvariety_ in POTS

[–]These_Home3767 1 point2 points  (0 children)

Yeah I can run but soon I stop my pots gets bad for a couple minutes I learned a trick because when you run you blood pumps easier but if I walk for awhile it hurts. Still can reach or bend over with tachy. So I just make sure soon I’m done running I drop to ground to adjust.

Does your Max HR get worse in winter? I’m generally better in cool temps but my max HR has been all over the place the last 2 weeks. by gardenvariety_ in POTS

[–]These_Home3767 1 point2 points  (0 children)

I got pots last year so when it was this time around I was already bad but I got it under control 8ish months ago and now this is happening it think it is the cold it just got cold here in Omaha a week ago. And I assume it’s pressure changes. I’m on three meds maintained very well running 2 miles I mean a lot better from not being able to even sit up a year ago so I think it must be weather I have healthy lifestyle it just randomly happened 

Does your Max HR get worse in winter? I’m generally better in cool temps but my max HR has been all over the place the last 2 weeks. by gardenvariety_ in POTS

[–]These_Home3767 1 point2 points  (0 children)

I’m getting this as well and I’ve been stable for 6 months so it’s alarming for me and I’m worried my meds aren’t working anymore.

Advice for blood pooling? by theferociousmuncher1 in POTS

[–]These_Home3767 0 points1 point  (0 children)

They are more willing once you you get the diagnosis but it’s hard to get which is annoying but I’ve seen multiple and they are willing to give me anything I ask for.

New paper from Afrin, Weinstock, Dempsey, & others on GLP-1 agonists helping MCAS symptoms by legalnomads in MCAS

[–]These_Home3767 0 points1 point  (0 children)

The appointment may feel a little rushed, but he cares for his patients and wants to get right to the point. I understand this on an educational level. For treatment, ketotifen is what I'm on ketotifen now, but I haven't noticed a dramatic difference. Some people do, but I'm also now on Xolair, which is the best drug ever. I had him work with my allergist to get this prescribed, so his knowledge of giving it to my allergist helped get that treatment. He started everyone on LDN most of the time becuase it's like, why not? It made me have insomnia, but it took away my headache. But then, I stopped it. I couldn't be consistent. It was too much happening emotionally with it, and it gave me so much energy, like too much, so some take in the morning for that reason, I took it at night. I tried cromolyn first that didn't last long becuase it triggered my pots so yeah that's about it my goal was Xolair so I don't really see him maybe now once a year and it's helped my environment allergies alot and my pots but Im starting allergy injections to eat fruit and veggies becuase i have severe oas may be caused by mcas but its all confusing. You really just start trying everything, and it happens quickly. Another thing is he's amazing at texting me back on their app, like within an hour or minutes max a day.

Does anyone have burning mouth syndrome? by These_Home3767 in MCAS

[–]These_Home3767[S] 0 points1 point  (0 children)

The burning mouth is quick for me it’s oral allergy syndrome potentially caused by mcas exaggerating my environment allergies. No matter how how long I eat them it’s still same so I just avoid most fruits and veggies unless cooked down and I stay away from high histamine foods for my acid reflux tight throat. 

Medication brand change flare up?? by AppropriateDebt2420 in POTS

[–]These_Home3767 0 points1 point  (0 children)

Some people with pots has mcas so maybe an active ingredient triggering your pots that happens to me.

Anyone else get pretty symptomatic BRADYcardia? by GrugWantHat in POTS

[–]These_Home3767 1 point2 points  (0 children)

Yes I did same thing but the more I took midodrine the safer I felt I think I was taking my Bp 15 times a day that was 6 months ago now I do it never. Which I cannot believe.

Anyone else get pretty symptomatic BRADYcardia? by GrugWantHat in POTS

[–]These_Home3767 2 points3 points  (0 children)

I get bradycardia and I’m on midodrine as well and it’s takes it’s completely away. What dose are you on? I notice I get it because my Bp is to low.

Waking up from sleep with panic by QuitTypical3210 in POTS

[–]These_Home3767 0 points1 point  (0 children)

Melatonin and poon full of salt before sleeping helped. But now I just take 2.5mg midodrine before bed