Can’t catch a break

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3 weeks ago I had Covid again for the 2nd time since October. I just had my cycle which puts me into flares, and my husband relapsed on his addiction last week. My husband is already facing court in 11 days again for sentencing for class c felony. He is facing up to 5 years in jail.  I have been under severe stress since last April. My kids are sick again and now I’m feeling like I’m getting it again too. I have had throat swelling, flushing, diarrhea and hives off and on for 6 days now again. 😫 it’s so frustrating having mast cell issues on top of withdrawals I never recovered from. Only thing that gives me relief is pure thc I vape for pain and nausea.

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=[ sorry to hear , I feel it never ends too

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Thank you chronic illness is so hard. I feel for everybody walking through this.

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Thank you chronic illness is so hard. I feel for everybody walking through this.

I haven't gone into anaphylaxis,  but I have developed mast cell response to so many things, I even get pain in my muscles, from eating certain foods,  it's so intense I can't stand up. Never had this before quitting but it got really bad when I tried to take buspar while in withdraw, I had a very bad reaction to the drug and now I react to everything.  It's exhausting,  I can't understand how one symptoms goes and another one pops up when you thought the previous one could not be worse.  My head and eyes hurt so bad and I cannot decide whether I need to see the doctor,  I am so sick of going there.  Been a week long headache. Sorry you're struggling, I am with you. 

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I had anaphylaxis last Friday and my lymph nodes swelled up all’s own my neck with severe dizziness, headache for a week straight also. It is very frustrating that’s why I have turned to medical marijuana to give me relief! Have you tried antihistamines that’s the treatment that they use for mast cell reactions. I had to have mine compounded because I reacted tot he other ingredients in Benadryl. I sue cromolyn and thc to help me. I only take 2 drops of cromolyn a day and I’m supposed to take 8 vials a day! Each vial has 70 drops but I react terribly to it. I had 3 weeks with no food reactions which is the longest I have gone in 2 years!!! Mcas specialist are rare not sure where you live but Dr Afrin Lawrence is in NY. Mcas is a whole lot scarier in withdrawals because it could kill me. I’m used to it though I have no fear of it anymore.

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I had anaphylaxis last Friday and my lymph nodes swelled up all’s own my neck with severe dizziness, headache for a week straight also. It is very frustrating that’s why I have turned to medical marijuana to give me relief! Have you tried antihistamines that’s the treatment that they use for mast cell reactions. I had to have mine compounded because I reacted tot he other ingredients in Benadryl. I sue cromolyn and thc to help me. I only take 2 drops of cromolyn a day and I’m supposed to take 8 vials a day! Each vial has 70 drops but I react terribly to it. I had 3 weeks with no food reactions which is the longest I have gone in 2 years!!! Mcas specialist are rare not sure where you live but Dr Afrin Lawrence is in NY. Mcas is a whole lot scarier in withdrawals because it could kill me. I’m used to it though I have no fear of it anymore.

 

Sorry you’re suffering GMH!

 

I have mast cell issues from antibiotics and then had my Booster and things have gone wild.

 

I also have POTS and my POTS dr trained under Dr Afrin and she agrees, while I don’t have classic MCAS symptoms, I’m having mast cell reactions.

 

I’m now reacting to my Valium pill and Trazodone, also the antihistamines I was taking.

 

How did you know what was bothering you in the pill?

What did you tell them to use to get them compounded.

 

I’m not sure if I’m experiencing anaphylaxis or not, but I think I have a few times. Crazy!!

 

I hope we all feel better

Winnie

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I was using the Childrens dye free liquid Benadryl. It’s really a process of elimination to figure out what you are reacting too. The Benadryl after being compounded is just water and diphenhydramine and it cost me $59. Anaphylaxis for me is BP goes crazy, heart rate goes up to 150’s, tremors, hives, flushing, diarrhea and I Get the chills and my throat swells. I can rebound for days after. No matter what I eat or smell i react. It’s so exhausting that’s why I just vape marijuana. Marijuana is a mast cell stabalizer. Want to go see Dr Afrin but the first visit alone is $2,000 not including airfare and hotel. I sure hope you find something to help you. I highly recommend if you have Facebook to joint Mast cell activation and Mastocytosis support group. I have learned a ton and it helps knowing we are not alone. Hang in there it’s a super horrendous disorder!!!

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I was using the Childrens dye free liquid Benadryl. It’s really a process of elimination to figure out what you are reacting too. The Benadryl after being compounded is just water and diphenhydramine and it cost me $59. Anaphylaxis for me is BP goes crazy, heart rate goes up to 150’s, tremors, hives, flushing, diarrhea and I Get the chills and my throat swells. I can rebound for days after. No matter what I eat or smell i react. It’s so exhausting that’s why I just vape marijuana. Marijuana is a mast cell stabalizer. Want to go see Dr Afrin but the first visit alone is $2,000 not including airfare and hotel. I sure hope you find something to help you. I highly recommend if you have Facebook to joint Mast cell activation and Mastocytosis support group. I have learned a ton and it helps knowing we are not alone. Hang in there it’s a super horrendous disorder!!!

I get extreme attacks like this,  I thought it was "panic " , I was under the impression anaphylaxis needed intervention or you'd die.  When I go through this is last hours, so... you smoke when you have this happen? Or use the thc/cbd combo edible?

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I was using the Childrens dye free liquid Benadryl. It’s really a process of elimination to figure out what you are reacting too. The Benadryl after being compounded is just water and diphenhydramine and it cost me $59. Anaphylaxis for me is BP goes crazy, heart rate goes up to 150’s, tremors, hives, flushing, diarrhea and I Get the chills and my throat swells. I can rebound for days after. No matter what I eat or smell i react. It’s so exhausting that’s why I just vape marijuana. Marijuana is a mast cell stabalizer. Want to go see Dr Afrin but the first visit alone is $2,000 not including airfare and hotel. I sure hope you find something to help you. I highly recommend if you have Facebook to joint Mast cell activation and Mastocytosis support group. I have learned a ton and it helps knowing we are not alone. Hang in there it’s a super horrendous disorder!!!

I get extreme attacks like this,  I thought it was "panic " , I was under the impression anaphylaxis needed intervention or you'd die.  When I go through this is last hours, so... you smoke when you have this happen? Or use the thc/cbd combo edible?

 

 

That’s what MCAS is anaphylaxis like reactions. Anaphylaxis has different grades. You can have hives and sneezing with flushing. You can have nausea, flushing, throat swelling. It all can very I have never need to epi or the er but there are times I absolutely should’ve used my epi pen and called 911. To be honest I don’t care if I die from it because this disorder is absolutely torture. As I am writing I am sitting here covered in hives and have instant urge to use the bathroom from eating. But yes the majority of people believe anaphylaxis is dying or not being able to breathe. Here is a link that explain it better! Also just Google grades of anaphylaxis! I just use pure thc no cbd. My dispensary doesn’t carry cbd also I vape it I reacted to smoking.

 

 

https://www.aaaai.org/conditions-treatments/related-conditions/mcas

 

 

 

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Godsmyhope,

 

I am so sorry to hear all the struggles you're going through. It's difficult enough going through benzo withdrawal but then having another illness on top of it and then your husband facing a sentence like that. My heart really goes out to you. I'm so sorry. I wish there was something I could do to help you and take away your pain. We're All in This Together struggling. I sure hope things get easier for you. Sending warm love and healing thoughts your way!

 

LiveLife

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Godsmyhope,

 

I am so sorry to hear all the struggles you're going through. It's difficult enough going through benzo withdrawal but then having another illness on top of it and then your husband facing a sentence like that. My heart really goes out to you. I'm so sorry. I wish there was something I could do to help you and take away your pain. We're All in This Together struggling. I sure hope things get easier for you. Sending warm love and healing thoughts your way!

 

LiveLife

 

Thank you it’s been really hard. My husband was caught with underage material and we have kids. It’s been a very tragic situation and very stressful. I had 7 officers come to my home last April and that’s how I found out about how bad his addiction was. 😭 withdrawal is tough but yes anything on top of that I’d brutal. Thanks for your kind words and support it means alot.