Guest KiminOrlando Posted July 4, 2022 Report Share Posted July 4, 2022 For 'leaky' Mast Cells, but not MCAS or MCAD. I have POTS and NCS. They recently upped my fludrocortisone to .15 MG from .1mg. I can barely stand up without being lightheaded and feeling like I'm going to faint. I take 2 Xyzal and 1 Hydroxyzine in addition to LDN, Singulair, Quercetin. Could all these antihistamines be causing this? I can't not take Mast Cell meds because I will stay in a constant state of hives, swollen lips, swollen tongue, and runny nose. How do the rest of you deal with this or is it unrelated? Thanks. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 4, 2022 Report Share Posted July 4, 2022 Possibly becoming a bit dehydrated? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 4, 2022 Report Share Posted July 4, 2022 12 minutes ago, MikeO said: Possibly becoming a bit dehydrated? I drink a Liquid IV plus additional liquids and take a salt pill every day, BUT, this is possible. Does an antihistamine dehydrate you or is it a decongestant that is supposed to dry things up? Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted July 4, 2022 Report Share Posted July 4, 2022 As I understand it, the Singulair and Quercetin are mast cell stabilizers. I'm taking both, along with desloratadine (H1) and cimetadine (H2). None of it really seems to make much of a difference. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 4, 2022 Report Share Posted July 4, 2022 15 minutes ago, KiminOrlando said: I drink a Liquid IV plus additional liquids and take a salt pill every day, BUT, this is possible. Does an antihistamine dehydrate you or is it a decongestant that is supposed to dry things up? antihistamines will dry things up but somewhere i read that this includes in general fluid in the body. "Antihistamines basically work by “drying you up”, so anything involving fluid in your body will decrease—including urine" Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 4, 2022 Report Share Posted July 4, 2022 I may not be able to stay on these then. Two OTC Xyzal (H1) and 1 Hydroxyzine (H2) and I can barely walk. This can't continue. Even the increased Fludrocortisone didn't help. I guess I have to contact the Mast Cell doctor. I think the meds are working for Mast Cells though. I had color put on my hair with no reaction. I had a Kosher hotdog with no reaction (maybe Kosher fixed that). I had a plum and so far, I'm still ok. Tomorrow I try watermelon again. 🍉 I just can't walk across the house. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 4, 2022 Report Share Posted July 4, 2022 @KiminOrlando - have they ever considered IV fluids in situations like this? I too have POTS and NCS and get IV's twice a week, and I am more stable. Could your doctor give you a prescription for as needed IV fluids and you can go to an infusion center or urgent care center when you need them? Thsi way you might be able to stay on the meds, since they seem to help you. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 4, 2022 Report Share Posted July 4, 2022 I am told that I don't qualify for IV fluids. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 4, 2022 Report Share Posted July 4, 2022 2 hours ago, KiminOrlando said: I am told that I don't qualify for IV fluids. To be honest not sure i would want to be sucking down IV bags two to seven days a week for the next 20-30 years. Sure the insurance would frown on that as well. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 24, 2022 Report Share Posted July 24, 2022 Ok. I can't stay on this much antihistamine. My doctor switched me to eye drops that are a combo antihistamine and Mast Cell stabilizer called Zatador. Has anyone tried this? It is OTC and was purchased at Walgreens. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 24, 2022 Report Share Posted July 24, 2022 26 minutes ago, KiminOrlando said: Ok. I can't stay on this much antihistamine. My doctor switched me to eye drops that are a combo antihistamine and Mast Cell stabilizer called Zatador. Has anyone tried this? It is OTC and was purchased at Walgreens. No flipping way! I have been choking down Claritin every few months and it does suck. Hanging out in the wings to see how this works for you. Quote Link to comment Share on other sites More sharing options...
Knellie Posted July 24, 2022 Report Share Posted July 24, 2022 @KiminOrlando - I just got put on Singulair and Levocitirizine (Xyzal). I have been on them for about 4 days and so far I have had two terrible migraines and I have had weird mood changes which I believe are from the new meds. Have you been on your antihistimines very long? Does it get better? It sounds like you aren't doing well on them either. I was thinking about messaging my doctor and asking them if I should get off of them. Sorry I wasn't helpful, although it was nice to know that I am not alone when it comes to these weird antihistimine reactions. Sorry you are dealing with this too! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 25, 2022 Report Share Posted July 25, 2022 1 hour ago, DysautonmiaMatt said: Tried this and gave me a headache. That is what I'm afraid of. I already take migraine meds. I'm holding off starting this until I have a day that I have time to be miserable. Quote Link to comment Share on other sites More sharing options...
supertired Posted July 26, 2022 Report Share Posted July 26, 2022 I have trouble with anithistamines too... worsen the POTS, shortness of breath, etc. Plus, REALLY exacerbates bladder plain. The dehydration, I'm sure, is part of it... but I almost react like I'm allergic to the antihistamines (makes me feel like I'm dying...)... I haven't finished experimenting, but have found that I react to the "dye" in a lot of meds... I hear that's a thing with Benadryl, etc. I just don't do well with meds in general... SO... I don't take anything unless there is an emergency, and then I deal with the side effects while trying to get through... not the greatest solution, though. I was told by my allergist to try one allergy med at a time to see how I tolerated them so I could know which one I can take when I need them... it's on my "to-do" list... maybe you could try that? It's like an elimination diet for allergy meds, LOL. Quote Link to comment Share on other sites More sharing options...
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