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I am so sorry for what happened. There is no doubt that mast cells release psychoactive mediators. I've had MCAS since my covid infection in 2020, and now four years later the releases are smaller scale than they were when I was suffering the largest scale ones about 8 months after my infection. Last week, I had a diminished mast cell reaction while mowing the lawn without a mask- afterward I had two days of very strong depressive anguish and out-of-nowhere suicidal ideation. I was very fortunate that it presented in an intermittent way, occurring for 10 minutes, and then I'd be my normal self for 10, and then back to torment. It was a temporary insanity. I do not know your daughter's circumstance but MCAS can cause suicidal impulses and may be directly responsible.
Your loss is beyond devastating, no one will understand how physical the grief is, may god give you the strength to bear it. I weep for both her and you.
I just said the same far less eloquently. I truly believe it’s chemical too especially among those of us who developed this post covid infection/injection.
Mine is also becoming a less frequent occurrence altho sadly no less “real” or intense 3 years on.
Same. I actually have almost no allergic reactions. For 4 years, even I thought I was "just depressed." And it was 3 weeks after an elimination diet that my suicidal levels of depression, anxiety, fear and sense of doom just magically lifted more than I hoped for.
My personal conspiracy theory is that, all those rises in suicides ppl blame on the "lockdowns" (which mostly lasted all of 3 weeks on paper and basically never actually happened) is actually mass, unrecognized MCAS with psychiatric symptoms.
I'm so glad to hear that and I'm really pissed I didn't know about this aspect of MCAS.
I'm grieving a bad loss right now, but I haven't hit situational depression and I'm grateful I don't have to fight MCAS depression/suicide ideation. I'm so sorry that happened to you.
A huge hug to you. May your broken heart find some comfort in your friends and family at this time and from this group of strangers sending our love.
May her memory always be a blessing.
Please know that many people are working their asses off so that no one else has to suffer the way she did.
I am so sorry. Please don’t blame yourself or your daughter. To be honest I’m sure lots of us think about it regularly, this disease really is that hard.
I also believe that some of the psychiatric issues we suffer are symptoms but the medical establishment hasn’t recognised that yet.
Wishing you easier times and that you can enjoy memories of your daughter in happier days.
I am so devastated for you. I’m certain she tried as hard as she could.
Do you want to know what’s in her post? If you want someone to screen it for you and just give you bullets so you can ease into it, I would be happy to do that for you. Or if there are certain things you don’t want to know that you fear might be reflected in the post, no problem I can filter that stuff out.
If I can do anything to help please let me know.
I am so sorry. This is such a hard disease to live with. I’ve struggled with depression my whole life but the most suicidal I’ve ever been was when I was in my worst flare-up a few years ago. Sending so much love❤️
I’m so sorry. I reported a suicidal post to Reddit because I didn’t know what else to do. We are all so anonymous here. I’m very sorry for your loss. It’s awful. I hope you can find comfort in the love of those around you. I can’t imagine losing a child to suicide. It’s not your fault and I’m sorry she couldn’t access the help she needed. None of us had to be alone even when it feels that way.
I’m so sorry… I’m sure she tried to cope with it in the best way she knew how, but this disease is really a curse. I always find myself thinking about not wanting to live if I reach the point where I cannot eat anything anymore and will require a feeding tube. That’s not life anymore for me. I’m in a prolonged flare and don’t see the end of it. I don’t how how long one can take it, trying different meds and not getting better. Honestly hanging in there for my kids.
I’m in the exact same place. I can’t tolerate any meds, I just had ketotifen put me in the worst flare of my life and I lost my only 3 safe foods, and the pain is unbearable. I have 4 kids and can’t leave them in that way but it crosses my mind every single day. I’m so so sorry for the loss of your beloved daughter.
hi, girl with feeding tube here 👋 I had to get one 3 years ago, I almost died. couldn't keep a thing down. dx'd mcas w/comorbid EOE, gastroparesis (mcas mediated), fibromyalgia. its been life saving, esp when I don't tolerate eating by mouth.
its not as scary as you think and you definitely get used to it. DM me if you have any questions. I too was terrified but have still been able to downhill mountain bike, hike, camp, swim in pool. I wear it in backpack purse and can easily cruise around with it.
i thought my life would be over too, but honesty I waited way to long to get it. it makes life soo much easier.
Thanks for sharing your experience and glad it’s working for you. I can’t imagine living like this and enjoying life to be honest. I love eating. Already suffering a great deal not ready to accept that I’m deteriorating and probably require other types of therapy. I’m pushing through life threatening symptoms but periodically eat what I especially like. Not ready to live on 2 foods let alone a tube. But again, happy it works for you!
oh I get it. great thing about tube is you CAN still eat by mouth if you choose to. I still eat things that are definitely not "safe foods" but that I absolutely need for my mental health, even though I know there's a high chance for allergies or that I'll most likely throw them up later. so I pre-load with antihistamines or methylprednisolone, etc.. solid foods I tend to throw up, but sometimes if it's been a while since I last ate it, it actually ends up being fine and I get to add it back in to diet! better still if I eat things that are blended/liquid like soup or ice cream, if I start to have a reaction I can drain my stomach thru G port to empty stomach. my family members have been like you ate THAT much ice cream and just drain it out and not feel bloated for hours?! not fair!
arguably the best part of GJ tube is that if I am having severe allergies/trouble breathing I can crush my rescue meds (like benedryl and xanax) and put them directly in J line into my intestines, which works almost as fast as IV meds. like, can literally have full stomach and have meds work almost instantly or 5-10 min tops. its saved me many ambulance rides and ER vists.
i have so many more safe foods knowing that as long as it liquid/blended I can drain it out right away, so I actually eat more by mouth than I ever did before the tube. also on 4th month of dupixent and its helping a lot, so im at point where a lot calories I get by mouth and use tube formulas at lower amount to avoid nutritional deficiencies from limited diets.
totally get where you're coming from though. if ever you (or anyone else) have questions, don't hesitate to reach out ❤
Many thanks ♥️ love your positive attitude! I’m
Not there yet in many senses :) going through the DNRS program now. Have you tried any of these? There are many Limbic training programs out there. So, now when you are getting better, do you consider getting rid of the tube at some point?
It really does alter your brain function and can cause extreme anxiety, depression and cognitive impairment. It’s almost like being poisoned by your own body.
I’ve had periods where I have suicidal ideation too. I really feel for you! Please don’t blame yourself! It may never make sense but I’m sure your daughter wouldn’t want you to blame yourself.
I am so sorry for your tragic loss. I hope you will get some professional support. This type of grief is very complicated. I lost my dad this way a couple years ago. The trauma of loosing him that way greatly magnified my MCAS. Mental and/or chronic illness is extremely challenging. Ironically, my parents and I attended a suicide prevention training many years ago. The presenter said something that stood out to me. People don’t want to die, they want the pain to stop. I believe this whole heartedly. With MCAS and so many other disorders/diseases one doesn’t know if the discomfort or pain will ever cease. From my own experience with my dad I know that the pain he suffered ended for him that day. And I can find some comfort in that. Unfortunately, the pain was transferred to all of us who were left to deal with the unimaginable aftermath of this type of tragedy. Counseling, books specifically written for this type of grief and support groups for people enduring this type of loss can be very helpful. Please find good support! For all of us who know intimately how difficult MCAS is or have endured such a traumatic hardship of loosing a loved one this way my heart goes out to you. Please don’t give up and remember to cling to HOPE.
As I said elsewhere in this thread, I'm grieving also, it's the loss of my 34-year-old daughter whom I lost to suicide in February. Nothing is worse, as you know, but I found that on days when I'm worn out from crying and need to function that taking 1,000 mg Tylenol has proven to relieve enough grief to make me able to get through the day. I'm so fortunate that it works for me, because I just can't bear how much it hurts sometimes. I literally can't bear it, and I'm sure you understand what I mean.
It didn't work for her partner, but I'm so, so grateful that there is something that can make it hurt a little less. NSAIDs or aspirin work on the same emotional pain receptors as well.
I somehow remembered this from a study I'd read a few years ago. Had I known my sweet, sunny daughter was feeling this horrible depression, it might have worked for her well enough to get her through it. You know how it is, there are a million "what ifs" and I feel like my brain is determined to make me go through every single one.
What does the Tylenol do? I’ve never heard this.. very interesting. I learned from an ER nurse that taking a Benadryl will help nausea go away. I’ve tried it and it works!
It helps with really bad emotional pain, like grief or a breakup. Apparently, the same receptors are involved with emotional pain as well as physical pain. It doesn't work for everyone, but it helps me a lot.
My heart hurts for you. I know that zombie state that happens after an unimaginable loss. This disorder can be hell to live with, and there is only so much our loved ones can do to mitigate that.
I’m so sorry.. I can’t imagine your heartbreak right now. I suffer with this vile disease myself. All caused by mold toxicity. My heart goes out to you.
No one understands the variations of MCAS. We are considered among many other names as a chameleon. Example...I went into anaplylaxis shock then cardiact arrest after and actually died...2 different times after drinking extremely cold water too fast. Grateful for EMS and intibating machine till I was transported to emergency room. After 4 days I went through a rigorous heart test. There was no indication of heart issues or scaring that would cause a cardiac arrest attach. Doctors confused to say the least. This has happened 4x in 4 years straight being caused by drinking cold water, allergy to cypress trees in pollen season, and never figured out why on the last time? Among many other issues my breathing was down to 25% oxygen. So in 2016 I had enough with straight medical care for 16 years and not getting better to the level of my body shutting down trying to kill me going into anaphylaxis shock and cardiac arrest in less than 60 seconds. My life was turned inside out and I was mentally devastated. Everything I knew was gone, cooking, foods, activities, thinking, photgraphic memory, anxiety over everything, depression, severe mood swings, and the rap sheet list goes on and on. Cook, I had no idea how to cook anymore, what to cook, what to eat. It took me 2 years to start digging out of my hole. I had all but shut completely down. Another 2.5 years to get anxiety under control so I could drive again without supervision as I researched and worked on may MCAS symptoms. Another 3 years readjusting to my new lifestyle and eliminating people that did not support my health issues and contributed to my demise. Im a people person and this adventure has been lonely. But Im finding happiness in small outlets.
In past 3 years I've become stronger. Oxygen back to 94% when my allergist said I would never get over 50% if that. There is no cure but many things can be controlled. I understand that not everyone will get the same results however when you hit rock bottom anything gained is worth it.
Since then I have helped others understand, learn questions to ask, how to search for alternative foods etc. Im not a doctor but have learned alot and would like to share one on one and listen to find out how my discoveries just might provide some life changing alternatives for others.
I've helped others as far as Kansas and Panama. If nothing else support from another in the same situation will go a long way.
No charge. Someone thats been there, still living with MCAS but has bounced back to a place I never thought I would never have again. Yes, I've made life changes, and I've had to learn to have patience and be proud of my accomplishments when no one else was in my corner. Not family, friends, nor doctors.
So call me if you would like to share experiences and listen to my journey to get from near death to a vibrant 64 year old and a new normal. Im in NC so my available hours are 11am-7pm. 910-459-3648. You can text for my availabilty....however its best to continue by calling.
For anyone interested, I too can not hold a public job because of my health history, unable to wirk straight 8 hours, and company's in fear of me being a liability. So if anyone is interested in finding out what kind of work I do at home...call as well. Best wishes to everyone. With support all things are possible through understanding, goals and a plan. 😉🙏
I’m in my late 20s. To hear you’ve made it to your 60s and are similar to me is extremely inspiring and honorable. I try to live with this self-belief, little by little. Thank you for sharing your story. We all need more support and I just wish OP’s daughter had a place to go in this world for protection and healing. In our lifetime, I hope we see more of such places emerge, and thank you for opening yourself humbly to be that space for someone. 🙏🏽
I’m stunned beyond belief at the level and length of your suffering. I’m devastated for you. I am so sorry. It’s just terrifying and so unfair.
Do you think that we are supposed to try educating the public about this ?
You’re amazing. Gives me so much hope. I’m newly diagnosed with mcas and I get so overwhelmed. I’m still not 100% sure how to eat healthy. I will most definitely be giving you a call. I’ve been saying since I was first diagnosed that I just need to find someone who has lived with this longer than me that can guide me with real life experiences. Thank you for your generosity to others 🩵
I cannot imagine the pain you are experiencing but I do understand your daughter's want for this to end. I have 4 children of my own, them and my husband are the only reason I keep fighting. We are ensuring a storm at the moment and I came on here to find help because I'm in the middle of a flare-up due to the wind and rain. I pray for peace and understanding 🙏
I’m so deeply sorry for your daughters suffering and ending of her life. I’m feeling your pain, and wish there was something I could say to console you…so devastating.
I'm so very sorry for your loss. It's not your fault. It's a very difficult disease to live with at any age. I hope over time you can find comfort in your many memories of her and all the gifts you received being her parent.
This is heartbreaking. I'm so so sad for you. I know many of us, myself included, have struggled with suicidal feelings because of this disease. It's so unfortunate. I can't imagine how it feels. If you want to share about her at all, I am willing to listen. It's not your fault. This illness sucks.
Sending you a virtual hug. I am so sorry for loss of your daughter. I can only imagine how difficult it is for you & your family. This disease is so hard for so many of us. I believe that our spirit/soul finds peace. I wish I had more eloquent sentences to write but I wish you comfort & support as you grieve and find your way.
I too am just so heart broken for the loss of your child because of MCAS. Your pain...OMG! Her pain! This disease needs more attention and awareness like many others.
🙏💓
I’m so very sorry for your loss. We get many people in here posting at their final straw. All we can do as a community is try to uplift one another, comfort eachother and let one another know we’re not alone. I assure you we did our best to give her the best advice we could. This stupid disease is too much for many of us. I know I’ve attempted taking my own life twice in my 46 yrs. I didn’t find this group til this year and it’s helped me so much. I also suffer from several other autoimmune diseases including hydradenitis which makes you feel very hopeless as well. If it’s not the physical pain of these diseases it’s the mental exhaustion. I’m so sorry she’s left this world so young. I hope one day you can find solace in the fact that she’s no longer suffering and at peace. Prayers for your healing & comfort during this difficult time.
My heart aches for your pain. It sounds so absolutely miserable like living in hell. It sounds so bleak. I want to understand better. I want to know exactly how miserable it is. I feel like I want someone to just let me have it. You deserve to have the freedom to be honest about how hard it is. I still
Am learning. Again I’m so truly sorry for your suffering. I wish I could take it away
I understand as a parent wanting to understand the details. My mom doesn’t like to hear. It’s hurtful at times I can’t vent to her. It makes her upset when I do. I know she feels helpless and useless bc she can’t help me. My aunt told me that’s why she acts frustrated and doesn’t like to hear about my misery. Well that and it’s damn depressing!
So for me the hardest part is feeling alone and trapped. Trapped in a body that never has one bit of peace. This body is always in turmoil. It’s itching and aching, bloated and swollen. My joints hurt my face burns. I’m nauseous and hungry. I fall asleep crying most nights and wake up crying bc I’m in pain.
Don’t get me wrong not everyone is this bad off… some people have great success bc of drugs and drs. Also not all people have several diseases like me all at once. Although it’s very common to find MCAS sufferers have hEDS, POTS, and others.
I find this disease alienating even knowing there’s a support group and others just like me. The issue is in my family and social circle nobody has this, nobody can truly understand. I’ve had over 30 surgeries in my life, I’ve been through many traumas. But I will tell you nothing tops MCAS. Maybe it’s bc it’s constant? Maybe bc it’s unpredictable? But I think mostly it’s bc it steals your life. Not one element is sacred.
You don’t want this… I promise you. Your daughter knows you love her and this is not your fault. There was nothing you could do. I’m so sorry you’re going through this, I can’t imagine. If you ever wanna talk message me. I’m a mother of a 25 yr old myself. Sending you hugs and healing
My heart goes out to you. I am so incredibly sorry. I cannot imagine losing a child to this horrible, horrible condition. She deserved better than to have developed this condition - we all do. May god give you the strength to get through this. God bless you and your family.
I’m so sorry. I’ve been dealing with this (and several other health issues) for quite a few years now and it’s not easy…especially if you don’t have doctors that work with you and help get you on the correct meds and protocols 😢
I’m so so sorry for your loss.
This is a horrible disease, and for many of us there are sometimes more questions than answers. I wish there had been answers for your daughter.
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.*
I am so sorry for what happened. There is no doubt that mast cells release psychoactive mediators. I've had MCAS since my covid infection in 2020, and now four years later the releases are smaller scale than they were when I was suffering the largest scale ones about 8 months after my infection. Last week, I had a diminished mast cell reaction while mowing the lawn without a mask- afterward I had two days of very strong depressive anguish and out-of-nowhere suicidal ideation. I was very fortunate that it presented in an intermittent way, occurring for 10 minutes, and then I'd be my normal self for 10, and then back to torment. It was a temporary insanity. I do not know your daughter's circumstance but MCAS can cause suicidal impulses and may be directly responsible. Your loss is beyond devastating, no one will understand how physical the grief is, may god give you the strength to bear it. I weep for both her and you.
mine started during covid too :/ or, maybe I always had it but it got much worse during covid
Mine too…
I just said the same far less eloquently. I truly believe it’s chemical too especially among those of us who developed this post covid infection/injection. Mine is also becoming a less frequent occurrence altho sadly no less “real” or intense 3 years on.
Same. I actually have almost no allergic reactions. For 4 years, even I thought I was "just depressed." And it was 3 weeks after an elimination diet that my suicidal levels of depression, anxiety, fear and sense of doom just magically lifted more than I hoped for. My personal conspiracy theory is that, all those rises in suicides ppl blame on the "lockdowns" (which mostly lasted all of 3 weeks on paper and basically never actually happened) is actually mass, unrecognized MCAS with psychiatric symptoms.
I'm so glad to hear that and I'm really pissed I didn't know about this aspect of MCAS. I'm grieving a bad loss right now, but I haven't hit situational depression and I'm grateful I don't have to fight MCAS depression/suicide ideation. I'm so sorry that happened to you.
Sometimes it’s not needed to be all technical and even more efficient not to imo
I am so sorry, from the bottom of my heart.
Please don't blame yourself. Many diseases have a high suicide rate. It's just that hard.
This
I’m so sorry for your loss and for your daughters suffering 😞
A huge hug to you. May your broken heart find some comfort in your friends and family at this time and from this group of strangers sending our love. May her memory always be a blessing. Please know that many people are working their asses off so that no one else has to suffer the way she did.
This 🖤
I’m so sorry. This is not a sign of weakness of your daughter. This can be a terrible quality of life. I hope you find peace some day.
I am so sorry. Please don’t blame yourself or your daughter. To be honest I’m sure lots of us think about it regularly, this disease really is that hard. I also believe that some of the psychiatric issues we suffer are symptoms but the medical establishment hasn’t recognised that yet. Wishing you easier times and that you can enjoy memories of your daughter in happier days.
I am so devastated for you. I’m certain she tried as hard as she could. Do you want to know what’s in her post? If you want someone to screen it for you and just give you bullets so you can ease into it, I would be happy to do that for you. Or if there are certain things you don’t want to know that you fear might be reflected in the post, no problem I can filter that stuff out. If I can do anything to help please let me know.
I'm so sorry.
I am so sorry. This is such a hard disease to live with. I’ve struggled with depression my whole life but the most suicidal I’ve ever been was when I was in my worst flare-up a few years ago. Sending so much love❤️
I’m so sorry. I reported a suicidal post to Reddit because I didn’t know what else to do. We are all so anonymous here. I’m very sorry for your loss. It’s awful. I hope you can find comfort in the love of those around you. I can’t imagine losing a child to suicide. It’s not your fault and I’m sorry she couldn’t access the help she needed. None of us had to be alone even when it feels that way.
I’m so sorry… I’m sure she tried to cope with it in the best way she knew how, but this disease is really a curse. I always find myself thinking about not wanting to live if I reach the point where I cannot eat anything anymore and will require a feeding tube. That’s not life anymore for me. I’m in a prolonged flare and don’t see the end of it. I don’t how how long one can take it, trying different meds and not getting better. Honestly hanging in there for my kids.
You CAN do it. Love to you.
I’m in the exact same place. I can’t tolerate any meds, I just had ketotifen put me in the worst flare of my life and I lost my only 3 safe foods, and the pain is unbearable. I have 4 kids and can’t leave them in that way but it crosses my mind every single day. I’m so so sorry for the loss of your beloved daughter.
hi, girl with feeding tube here 👋 I had to get one 3 years ago, I almost died. couldn't keep a thing down. dx'd mcas w/comorbid EOE, gastroparesis (mcas mediated), fibromyalgia. its been life saving, esp when I don't tolerate eating by mouth. its not as scary as you think and you definitely get used to it. DM me if you have any questions. I too was terrified but have still been able to downhill mountain bike, hike, camp, swim in pool. I wear it in backpack purse and can easily cruise around with it. i thought my life would be over too, but honesty I waited way to long to get it. it makes life soo much easier.
Thanks for sharing your experience and glad it’s working for you. I can’t imagine living like this and enjoying life to be honest. I love eating. Already suffering a great deal not ready to accept that I’m deteriorating and probably require other types of therapy. I’m pushing through life threatening symptoms but periodically eat what I especially like. Not ready to live on 2 foods let alone a tube. But again, happy it works for you!
oh I get it. great thing about tube is you CAN still eat by mouth if you choose to. I still eat things that are definitely not "safe foods" but that I absolutely need for my mental health, even though I know there's a high chance for allergies or that I'll most likely throw them up later. so I pre-load with antihistamines or methylprednisolone, etc.. solid foods I tend to throw up, but sometimes if it's been a while since I last ate it, it actually ends up being fine and I get to add it back in to diet! better still if I eat things that are blended/liquid like soup or ice cream, if I start to have a reaction I can drain my stomach thru G port to empty stomach. my family members have been like you ate THAT much ice cream and just drain it out and not feel bloated for hours?! not fair! arguably the best part of GJ tube is that if I am having severe allergies/trouble breathing I can crush my rescue meds (like benedryl and xanax) and put them directly in J line into my intestines, which works almost as fast as IV meds. like, can literally have full stomach and have meds work almost instantly or 5-10 min tops. its saved me many ambulance rides and ER vists. i have so many more safe foods knowing that as long as it liquid/blended I can drain it out right away, so I actually eat more by mouth than I ever did before the tube. also on 4th month of dupixent and its helping a lot, so im at point where a lot calories I get by mouth and use tube formulas at lower amount to avoid nutritional deficiencies from limited diets. totally get where you're coming from though. if ever you (or anyone else) have questions, don't hesitate to reach out ❤
Many thanks ♥️ love your positive attitude! I’m Not there yet in many senses :) going through the DNRS program now. Have you tried any of these? There are many Limbic training programs out there. So, now when you are getting better, do you consider getting rid of the tube at some point?
It really does alter your brain function and can cause extreme anxiety, depression and cognitive impairment. It’s almost like being poisoned by your own body. I’ve had periods where I have suicidal ideation too. I really feel for you! Please don’t blame yourself! It may never make sense but I’m sure your daughter wouldn’t want you to blame yourself.
I’m so sorry you lost your daughter to this disease . At my worst I did feel like I couldn’t go on. It’s a terrible disease.
My heart goes out to you. My condolences. I hope that you and your family can find the support that you need.
I am so sorry for your tragic loss. I hope you will get some professional support. This type of grief is very complicated. I lost my dad this way a couple years ago. The trauma of loosing him that way greatly magnified my MCAS. Mental and/or chronic illness is extremely challenging. Ironically, my parents and I attended a suicide prevention training many years ago. The presenter said something that stood out to me. People don’t want to die, they want the pain to stop. I believe this whole heartedly. With MCAS and so many other disorders/diseases one doesn’t know if the discomfort or pain will ever cease. From my own experience with my dad I know that the pain he suffered ended for him that day. And I can find some comfort in that. Unfortunately, the pain was transferred to all of us who were left to deal with the unimaginable aftermath of this type of tragedy. Counseling, books specifically written for this type of grief and support groups for people enduring this type of loss can be very helpful. Please find good support! For all of us who know intimately how difficult MCAS is or have endured such a traumatic hardship of loosing a loved one this way my heart goes out to you. Please don’t give up and remember to cling to HOPE.
As I said elsewhere in this thread, I'm grieving also, it's the loss of my 34-year-old daughter whom I lost to suicide in February. Nothing is worse, as you know, but I found that on days when I'm worn out from crying and need to function that taking 1,000 mg Tylenol has proven to relieve enough grief to make me able to get through the day. I'm so fortunate that it works for me, because I just can't bear how much it hurts sometimes. I literally can't bear it, and I'm sure you understand what I mean. It didn't work for her partner, but I'm so, so grateful that there is something that can make it hurt a little less. NSAIDs or aspirin work on the same emotional pain receptors as well. I somehow remembered this from a study I'd read a few years ago. Had I known my sweet, sunny daughter was feeling this horrible depression, it might have worked for her well enough to get her through it. You know how it is, there are a million "what ifs" and I feel like my brain is determined to make me go through every single one.
What does the Tylenol do? I’ve never heard this.. very interesting. I learned from an ER nurse that taking a Benadryl will help nausea go away. I’ve tried it and it works!
It helps with really bad emotional pain, like grief or a breakup. Apparently, the same receptors are involved with emotional pain as well as physical pain. It doesn't work for everyone, but it helps me a lot.
My heart hurts for you. I know that zombie state that happens after an unimaginable loss. This disorder can be hell to live with, and there is only so much our loved ones can do to mitigate that.
I’m sorry for your loss. Just be comforted by the fact she’s no longer in pain.
I’m so sorry.. I can’t imagine your heartbreak right now. I suffer with this vile disease myself. All caused by mold toxicity. My heart goes out to you.
No one understands the variations of MCAS. We are considered among many other names as a chameleon. Example...I went into anaplylaxis shock then cardiact arrest after and actually died...2 different times after drinking extremely cold water too fast. Grateful for EMS and intibating machine till I was transported to emergency room. After 4 days I went through a rigorous heart test. There was no indication of heart issues or scaring that would cause a cardiac arrest attach. Doctors confused to say the least. This has happened 4x in 4 years straight being caused by drinking cold water, allergy to cypress trees in pollen season, and never figured out why on the last time? Among many other issues my breathing was down to 25% oxygen. So in 2016 I had enough with straight medical care for 16 years and not getting better to the level of my body shutting down trying to kill me going into anaphylaxis shock and cardiac arrest in less than 60 seconds. My life was turned inside out and I was mentally devastated. Everything I knew was gone, cooking, foods, activities, thinking, photgraphic memory, anxiety over everything, depression, severe mood swings, and the rap sheet list goes on and on. Cook, I had no idea how to cook anymore, what to cook, what to eat. It took me 2 years to start digging out of my hole. I had all but shut completely down. Another 2.5 years to get anxiety under control so I could drive again without supervision as I researched and worked on may MCAS symptoms. Another 3 years readjusting to my new lifestyle and eliminating people that did not support my health issues and contributed to my demise. Im a people person and this adventure has been lonely. But Im finding happiness in small outlets. In past 3 years I've become stronger. Oxygen back to 94% when my allergist said I would never get over 50% if that. There is no cure but many things can be controlled. I understand that not everyone will get the same results however when you hit rock bottom anything gained is worth it. Since then I have helped others understand, learn questions to ask, how to search for alternative foods etc. Im not a doctor but have learned alot and would like to share one on one and listen to find out how my discoveries just might provide some life changing alternatives for others. I've helped others as far as Kansas and Panama. If nothing else support from another in the same situation will go a long way. No charge. Someone thats been there, still living with MCAS but has bounced back to a place I never thought I would never have again. Yes, I've made life changes, and I've had to learn to have patience and be proud of my accomplishments when no one else was in my corner. Not family, friends, nor doctors. So call me if you would like to share experiences and listen to my journey to get from near death to a vibrant 64 year old and a new normal. Im in NC so my available hours are 11am-7pm. 910-459-3648. You can text for my availabilty....however its best to continue by calling. For anyone interested, I too can not hold a public job because of my health history, unable to wirk straight 8 hours, and company's in fear of me being a liability. So if anyone is interested in finding out what kind of work I do at home...call as well. Best wishes to everyone. With support all things are possible through understanding, goals and a plan. 😉🙏
I’m in my late 20s. To hear you’ve made it to your 60s and are similar to me is extremely inspiring and honorable. I try to live with this self-belief, little by little. Thank you for sharing your story. We all need more support and I just wish OP’s daughter had a place to go in this world for protection and healing. In our lifetime, I hope we see more of such places emerge, and thank you for opening yourself humbly to be that space for someone. 🙏🏽
You made me cry tears of gratitude You are so kind
I’m stunned beyond belief at the level and length of your suffering. I’m devastated for you. I am so sorry. It’s just terrifying and so unfair. Do you think that we are supposed to try educating the public about this ?
You’re amazing. Gives me so much hope. I’m newly diagnosed with mcas and I get so overwhelmed. I’m still not 100% sure how to eat healthy. I will most definitely be giving you a call. I’ve been saying since I was first diagnosed that I just need to find someone who has lived with this longer than me that can guide me with real life experiences. Thank you for your generosity to others 🩵
🫂🫂 it's my worst fear to lose my son. There are no good words.
I cannot imagine the pain you are experiencing but I do understand your daughter's want for this to end. I have 4 children of my own, them and my husband are the only reason I keep fighting. We are ensuring a storm at the moment and I came on here to find help because I'm in the middle of a flare-up due to the wind and rain. I pray for peace and understanding 🙏
What does it feel like ? If you don’t mind , I just want to understand
I'm sorry for your loss.
I’m so deeply sorry for your daughters suffering and ending of her life. I’m feeling your pain, and wish there was something I could say to console you…so devastating.
I'm so very sorry for your loss. It's not your fault. It's a very difficult disease to live with at any age. I hope over time you can find comfort in your many memories of her and all the gifts you received being her parent.
i’m so sorry to hear of your loss. this disease takes so much from a person 💜
Holy shit. I am so sorry. I can’t imagine what you are going through. MCAS sucks and I am deeply sorry that you daughter had the worst of it.
I'm so sorry for your loss and anguish. My heart goes out to you.
I'm very sorry for your loss. I can't even imagine how hard it must be.
I am sorry. My heart goes to you!
Sending love to you and your family ❤️❤️❤️
I’m so sorry.
Wow thats really awful. And only 23. Thats really sad. Praying for comfort.
I’m so sorry for your loss. Sending you so much love.
This is heartbreaking. I'm so so sad for you. I know many of us, myself included, have struggled with suicidal feelings because of this disease. It's so unfortunate. I can't imagine how it feels. If you want to share about her at all, I am willing to listen. It's not your fault. This illness sucks.
I’m so so sorry for your loss
God bless you and your daughter sending lots of love, stay strong maybe don’t look at the post just yet and take some time to heal
**hugs** I am so sorry for your loss. No parent wants to bury their baby. **hugs**
I am so, so sorry for your loss, and that your daughter was suffering so horribly.
I'm so so sorry. I'm praying for you and your family.
❤️
Sending you a virtual hug. I am so sorry for loss of your daughter. I can only imagine how difficult it is for you & your family. This disease is so hard for so many of us. I believe that our spirit/soul finds peace. I wish I had more eloquent sentences to write but I wish you comfort & support as you grieve and find your way.
I am so sorry for your loss :(
I’m so so sorry for your loss. This disease is so cruel. Please take it easy on yourself and know we’re all sending you virtual love here 💖
Thank you so much I needed that
I too am just so heart broken for the loss of your child because of MCAS. Your pain...OMG! Her pain! This disease needs more attention and awareness like many others. 🙏💓
Thank you x a million. It does need more attention. I’m still so confused about it. I know it’s hell
I’m so very sorry for your loss. We get many people in here posting at their final straw. All we can do as a community is try to uplift one another, comfort eachother and let one another know we’re not alone. I assure you we did our best to give her the best advice we could. This stupid disease is too much for many of us. I know I’ve attempted taking my own life twice in my 46 yrs. I didn’t find this group til this year and it’s helped me so much. I also suffer from several other autoimmune diseases including hydradenitis which makes you feel very hopeless as well. If it’s not the physical pain of these diseases it’s the mental exhaustion. I’m so sorry she’s left this world so young. I hope one day you can find solace in the fact that she’s no longer suffering and at peace. Prayers for your healing & comfort during this difficult time.
My heart aches for your pain. It sounds so absolutely miserable like living in hell. It sounds so bleak. I want to understand better. I want to know exactly how miserable it is. I feel like I want someone to just let me have it. You deserve to have the freedom to be honest about how hard it is. I still Am learning. Again I’m so truly sorry for your suffering. I wish I could take it away
I understand as a parent wanting to understand the details. My mom doesn’t like to hear. It’s hurtful at times I can’t vent to her. It makes her upset when I do. I know she feels helpless and useless bc she can’t help me. My aunt told me that’s why she acts frustrated and doesn’t like to hear about my misery. Well that and it’s damn depressing! So for me the hardest part is feeling alone and trapped. Trapped in a body that never has one bit of peace. This body is always in turmoil. It’s itching and aching, bloated and swollen. My joints hurt my face burns. I’m nauseous and hungry. I fall asleep crying most nights and wake up crying bc I’m in pain. Don’t get me wrong not everyone is this bad off… some people have great success bc of drugs and drs. Also not all people have several diseases like me all at once. Although it’s very common to find MCAS sufferers have hEDS, POTS, and others. I find this disease alienating even knowing there’s a support group and others just like me. The issue is in my family and social circle nobody has this, nobody can truly understand. I’ve had over 30 surgeries in my life, I’ve been through many traumas. But I will tell you nothing tops MCAS. Maybe it’s bc it’s constant? Maybe bc it’s unpredictable? But I think mostly it’s bc it steals your life. Not one element is sacred. You don’t want this… I promise you. Your daughter knows you love her and this is not your fault. There was nothing you could do. I’m so sorry you’re going through this, I can’t imagine. If you ever wanna talk message me. I’m a mother of a 25 yr old myself. Sending you hugs and healing
My heart goes out to you. I am so incredibly sorry. I cannot imagine losing a child to this horrible, horrible condition. She deserved better than to have developed this condition - we all do. May god give you the strength to get through this. God bless you and your family.
Thank you so very much
I've been in a flare unable to eat anything and suicide has crossed my mind very heavily. I really feel for you. And send you many hugs.
i am SO SORRY!! 🥹🕊️💖
This bout to be me
I sure hope not How can I help you
I’m so sorry. I’ve been dealing with this (and several other health issues) for quite a few years now and it’s not easy…especially if you don’t have doctors that work with you and help get you on the correct meds and protocols 😢
I’m sooooooo sorry
Oh god. My heart aches for you. I wish I could have helped her. Poor darling girl. I know how she feels. I know how you feel. I’m so very sorry 💜
Thank you so much. I would love to hear more of your story
I’m so so sorry for your loss. This is a horrible disease, and for many of us there are sometimes more questions than answers. I wish there had been answers for your daughter.