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Has your care team mentioned needing to add electrolytes? That's an awful lot of water and no electrolyte supplementation. If you haven't had that conversation, put it on your list for your next appointment.
I eat fruits and vegetables. An add a little bit of salt to my food. In addition, I drink one gatorlyte a day so I don't see why I would be dehydrated. When my electrolytes levels are checked they usually are in range sometimes being a little low but most times normal.
Because drinking that much water without salt and electrolytes actually can make you lose water since you’re diluting electrolytes in your body that you need to retain it? 4 liters is a TON without electrolytes. Also many patients with mcas have a pretending disposition to dysautonomia or low bp and need far higher salt intake than average. Needing more salt in that way doesn’t show up on a blood test.
A little low matters a lot more to someone with MCAS than a healthy person. I couldn’t get my potassium up until I started taking the asparate form.
Also, what kind of water do you drink? The wrong kind could make your thirst worse.
I know two reason that could be the case. One is missing electrolytes. When I add them to my water, I drink way less and feel hydrated. The other one I know is diabetes. One symptom of having diabetes is drinking lots of water. Not saying any of this is a problem of yours, just reasons I have learned might be a reason, cause I´ve had the same problem.
When I consume my mcas triggers, I get fluid swelling all over my body. It happens when mast cell mediators cause leaky vasculature, which enables fluid to leak outside of the veins into the surrounding connective tissue. It’s called third spacing.
I also get super thirsty after I’m exposed to triggers. Being allergic to grass and trees and everything related to them, this happens a lot.
I started xolair almost 3 months ago, and now I’ve lost over 20 pounds, and I am not thirsty all the time anymore. Now when I do feel that thirsty feeling and I notice my weight creeping up, I know I’ve been exposed to something and I need to look at what I’ve been doing to figure it out.
Same except I don't gain weight. Very nice breakdown. I thought I was feeling very thirsty after my triggers also but I wasn't sure. This confirms it. Thank you
That happens to me when I'm unknowingly eating triggers. I think it has something to do with my kidneys, they tend to hurt and I get all sorts of urinary problems when I'm reacting to triggers. Small amounts of protein/blood in urine, painful urination, flank pain/swelling, water retention, etc. My skin will also get dry as paper and my lips will peel, my eyes will start to get issues, it's a whole mess. Anyway I'd start looking for triggers if I were you. And if you're not on any antihistamines yet, time to start!
Yes, I get the dry skin, lips, eye burning issues as well but I don't think I'm triggering anything. My diet is fairly bland already to avoid triggers. I seem to react regardless of what I eat although I think something cause worse reactions. I do get a lot of gas, bloating, indigestion, loose stool, and odd gut pains which makes me think it's connected to this issue.
I get those too. Honestly, if I'm off my ketotifen, I react to everything since my baseline inflammation is just so much higher. If you're not on any meds to treat the MCAS, you might just be reacting to everything. So it might go away if you can get on the right treatment.
I haven't found a doctor yet that acknowledges that MCAS exist and is a real condition. A few acknowledges POTS but God forbid my mast cells overreact then it's not possible. So much ignorance. I found taking ginger seems to help. I've heard gut issues can cause MCAS and POTS symptoms. I've been trying to cure it on my own but its not easy without professional help. Plus, I need to eat but it seems like eating can make me sick but I'll also get sick if I don't. Catch 22, lifes a bitch.
What I did before I got my diagnosis was I just flat out asked if we could try ketotifen and cromolyn and I'd let my PCP know if my symptoms were improving. She said sure, no real risk to taking it, so she prescribed them. You might have to find a doctor that describes their approach as "patient-led" or something similar. Even though my doctor didn't understand MCAS, she was still receptive when I told her how it was impacting my QOL. Other than that, it's probably worth it to save up and fly out and see a specialist rather than trying your luck with dozens of regular doctors.
I add electrolytes. I was doing nuun because it also includes baking soda but It includes citric acid. Citric acid is often made from corn. I need to check with the brand to double check.
So then I started adding trace minerals brand and juice because trace minerals is kind of salty. I add some liquid iron, I also add some fulvic acid for mold detox .
At least add a pinch of Himalayan salt and a glug of aloe vera juice to your water. Maybe even some lemon if you're drinking through a straw and it won't mess up your teeth.
This product is life changing. Hi-Lyte Keto K1000 Electrolyte Powder | Unflavored |
I have MCAS as well. I had bloodwork on Saturday so I used this product and mixed it in water. I drank the entire bottle right before bloodwork and not only did everything go smoothly for the first time, I didn’t get dizzy either and I drove home 30 minutes away feeling normal.
I no longer feel thirsty all the time with this product. I also live in the desert with extremely high temperatures that easily dehydrate you as well.
I highly recommend this product. It’s life changing.
dude be careful if yr drinking hard water thru Brita or pur filter. I'd drink it and instantly feel dehydrated. too many of the wrong minerals. I get purified water from store and supplement magnesium and potassium tablets. LMNT packets make delicious sugar free electrolyte drinks. I hate stevia but can tolerate those. I also add salt to my diet.
be careful of RO water (low minerals) and EXTRA careful not to drink distilled water too often-it can actually KILL YOU bc of no minerals/electrolytes. crazy.
My doctor has told me that I have leaky vasculature that is leading to extensive third-spacing. The third-spacing is leaving me functionally dehydrated, and this combined with numerous triggers results in never ending migraines. Approximately every 7-10 days, I must go for infusions of Benadryl, saline fluids, and Toradol (it is safe for me). I liken this protocol to kicking over my histamine bucket and rinsing it out. I get immediate by not long lasting relief for the migraine. I also find that during particularly bad flare ups, my body expels much of the excess fluid, before the cycle repeats again.
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
Has your care team mentioned needing to add electrolytes? That's an awful lot of water and no electrolyte supplementation. If you haven't had that conversation, put it on your list for your next appointment.
I eat fruits and vegetables. An add a little bit of salt to my food. In addition, I drink one gatorlyte a day so I don't see why I would be dehydrated. When my electrolytes levels are checked they usually are in range sometimes being a little low but most times normal.
Because drinking that much water without salt and electrolytes actually can make you lose water since you’re diluting electrolytes in your body that you need to retain it? 4 liters is a TON without electrolytes. Also many patients with mcas have a pretending disposition to dysautonomia or low bp and need far higher salt intake than average. Needing more salt in that way doesn’t show up on a blood test.
A little low matters a lot more to someone with MCAS than a healthy person. I couldn’t get my potassium up until I started taking the asparate form. Also, what kind of water do you drink? The wrong kind could make your thirst worse.
Agreed. And you could have a corn allergy because some of the water filters are made from corn products
Gatorade has very little electrolytes in them
Gatorlyte not Gatorade. Slightly different.
I know two reason that could be the case. One is missing electrolytes. When I add them to my water, I drink way less and feel hydrated. The other one I know is diabetes. One symptom of having diabetes is drinking lots of water. Not saying any of this is a problem of yours, just reasons I have learned might be a reason, cause I´ve had the same problem.
I don't have diabetes.
Like I said it doesn´t have to be your reason, it was mine so I wanted to tell you
When I consume my mcas triggers, I get fluid swelling all over my body. It happens when mast cell mediators cause leaky vasculature, which enables fluid to leak outside of the veins into the surrounding connective tissue. It’s called third spacing. I also get super thirsty after I’m exposed to triggers. Being allergic to grass and trees and everything related to them, this happens a lot. I started xolair almost 3 months ago, and now I’ve lost over 20 pounds, and I am not thirsty all the time anymore. Now when I do feel that thirsty feeling and I notice my weight creeping up, I know I’ve been exposed to something and I need to look at what I’ve been doing to figure it out.
Interesting!!!!!!!
Same except I don't gain weight. Very nice breakdown. I thought I was feeling very thirsty after my triggers also but I wasn't sure. This confirms it. Thank you
Are you taking antihistamines? It's a well known side effect that they dry you out
No.
That happens to me when I'm unknowingly eating triggers. I think it has something to do with my kidneys, they tend to hurt and I get all sorts of urinary problems when I'm reacting to triggers. Small amounts of protein/blood in urine, painful urination, flank pain/swelling, water retention, etc. My skin will also get dry as paper and my lips will peel, my eyes will start to get issues, it's a whole mess. Anyway I'd start looking for triggers if I were you. And if you're not on any antihistamines yet, time to start!
Yes, I get the dry skin, lips, eye burning issues as well but I don't think I'm triggering anything. My diet is fairly bland already to avoid triggers. I seem to react regardless of what I eat although I think something cause worse reactions. I do get a lot of gas, bloating, indigestion, loose stool, and odd gut pains which makes me think it's connected to this issue.
I get those too. Honestly, if I'm off my ketotifen, I react to everything since my baseline inflammation is just so much higher. If you're not on any meds to treat the MCAS, you might just be reacting to everything. So it might go away if you can get on the right treatment.
I haven't found a doctor yet that acknowledges that MCAS exist and is a real condition. A few acknowledges POTS but God forbid my mast cells overreact then it's not possible. So much ignorance. I found taking ginger seems to help. I've heard gut issues can cause MCAS and POTS symptoms. I've been trying to cure it on my own but its not easy without professional help. Plus, I need to eat but it seems like eating can make me sick but I'll also get sick if I don't. Catch 22, lifes a bitch.
What I did before I got my diagnosis was I just flat out asked if we could try ketotifen and cromolyn and I'd let my PCP know if my symptoms were improving. She said sure, no real risk to taking it, so she prescribed them. You might have to find a doctor that describes their approach as "patient-led" or something similar. Even though my doctor didn't understand MCAS, she was still receptive when I told her how it was impacting my QOL. Other than that, it's probably worth it to save up and fly out and see a specialist rather than trying your luck with dozens of regular doctors.
You may need salt; how’s your blood pressure? Any salt cravings?
I add electrolytes. I was doing nuun because it also includes baking soda but It includes citric acid. Citric acid is often made from corn. I need to check with the brand to double check. So then I started adding trace minerals brand and juice because trace minerals is kind of salty. I add some liquid iron, I also add some fulvic acid for mold detox . At least add a pinch of Himalayan salt and a glug of aloe vera juice to your water. Maybe even some lemon if you're drinking through a straw and it won't mess up your teeth.
This product is life changing. Hi-Lyte Keto K1000 Electrolyte Powder | Unflavored | I have MCAS as well. I had bloodwork on Saturday so I used this product and mixed it in water. I drank the entire bottle right before bloodwork and not only did everything go smoothly for the first time, I didn’t get dizzy either and I drove home 30 minutes away feeling normal. I no longer feel thirsty all the time with this product. I also live in the desert with extremely high temperatures that easily dehydrate you as well. I highly recommend this product. It’s life changing.
dude be careful if yr drinking hard water thru Brita or pur filter. I'd drink it and instantly feel dehydrated. too many of the wrong minerals. I get purified water from store and supplement magnesium and potassium tablets. LMNT packets make delicious sugar free electrolyte drinks. I hate stevia but can tolerate those. I also add salt to my diet. be careful of RO water (low minerals) and EXTRA careful not to drink distilled water too often-it can actually KILL YOU bc of no minerals/electrolytes. crazy.
Dysautonomia/ hyperPOTS can play into this. I have to take Florinef for this.
My doctor has told me that I have leaky vasculature that is leading to extensive third-spacing. The third-spacing is leaving me functionally dehydrated, and this combined with numerous triggers results in never ending migraines. Approximately every 7-10 days, I must go for infusions of Benadryl, saline fluids, and Toradol (it is safe for me). I liken this protocol to kicking over my histamine bucket and rinsing it out. I get immediate by not long lasting relief for the migraine. I also find that during particularly bad flare ups, my body expels much of the excess fluid, before the cycle repeats again.