Hi this same thing happened to me last night VERBATIM! I’m honestly terrified of it happening again as I was sure I was dying.
Hi. Did your episode start with itchy hands and arms or did that come after the gastrointestinal issues? Mine happened after and I'm so perplexed!
I just had my second attack less than a week ago. The first was two years ago. I just recovered from covid. I believe it is related to mast cell activation in the intestine (Mast Cell Activation Disorder). It starts with stomach cramps and mild diarrhea, then comes the itchy burnings sensation in the hands, then flushed itchy skin everywhere, then extreme dizziness and weakness. I tried to stand and found my legs were jelly, then I fainted. I actually fainted twice before I recovered. It felt like I was dying. I'm sure my blood pressure dropped like crazy. Nothing else can make you feel that ill all at once.
Thank you for posting this! It just happened to me for the second time in my life. The first clue is intestine that continues to cramp and spasm even after being 99% empty of stool... then the angioedema (puffy itchy tingly sensation) in the hands and feet. I am 41 with no history of food allergies. I took a Benadryl when it happened last week, but it takes 20 minutes to take effect. Definitely not fast enough when this thing can go from mild intestinal cramps to being literally too weak to stand due to low blood pressure within 15 minutes. The only reason I never called 911 is it was over by the time I had the power to leave the bathroom. I just hope to god I can find a specialist that takes this seriously. I don't know if I need an epinephrine injector just in case. I will take antihistamine when eating, but it has to be something better than Benadryl.
Thank you! You have convinced me to take this extremely seriously. First time was mostly vomiting, but I could at least stand. This time was worse as I was too weak to even leave the bathroom and actually passed out briefly when I tried to stand. My legs would just not function even after I came to. It took about 10 minutes for my leg muscles to come back to life after the fainting episode. It was like I had been punched in the head repeatedly and lost all strength in my legs. Maybe I knocked myself out falling. Who knows.
I’ve had these symptoms as well. I’ve been seeing a dr for this for nearly two years and have many different tests done for all the results to come back normal - which I am happy for but it still don’t give me answers as to why this is happening. I was wondering if you had gotten any answers from your dr to what this may be so maybe I could pass on to my dr. Thank you!
I have had these attacks for years, so happy to find this forum of 25 years thinking I was the only person who has this. I was told I had vasovagal syncope but the itchy hands and feet made me think it was something else.
My symptoms same for 20 faints:
-Itchy hands and feet
-Dizzyness
- Tightness of chest
- Need to pee/poop
- Red face/sweating/puffy face
- Faint unconscious
- Vomit
- Abdominal cramps
The last one that happened me two days ago scared me as my colleague said I stopped breathing and turned blue. Why is this still a mystery? I was good for 3 years and have had 4 episodes in last 3 months.
Any ideas or thoughts on this would really help I think I might have died had my colleague not helped me
My symptoms same for 20 faints:
-Itchy hands and feet
-Dizzyness
- Tightness of chest
- Need to pee/poop
- Red face/sweating/puffy face
- Faint unconscious
- Vomit
- Abdominal cramps
The last one that happened me two days ago scared me as my colleague said I stopped breathing and turned blue. Why is this still a mystery? I was good for 3 years and have had 4 episodes in last 3 months.
Any ideas or thoughts on this would really help I think I might have died had my colleague not helped me
I experienced symptoms like the starting in my late 30s ( I’m 43 now ). For me it always starts with sudden abdominal cramps and the feeling I needed to run to the toilet. Unlike a normal bout of diarrhea, the stool often started off normal but the cramping doesn’t subside once it passes. I have to stay on the toilet for a long time due to cramping and small amounts of diarrhea. At some point the itchy palms and soles starts. I would describe it as the “thawing” feeling you get if you wash your hands in very warm water after coming in with cold “frozen” hands from playing in the snow as a child. It has a “puffy” swollen feeling and tingles and burns as much as it itches.
Anyways, the vast majority of episodes only went this far (cramping and small amounts of diarrhea for a brief period being the worst of it). However, in the past 4 years I have had 3 much more severe episodes. The most recent one was two years ago. It started with intestinal cramps and itchy palms as before, but I also began vomiting, sweating profusely, and having a horrible feeling like I was dying. I could not even attempt to stand up without becoming dizzy and collapsing. After passing out and hitting my head my wife came and helped me crawl to my bed. She asked if she should calk the ambulance and I said no because I seemed to be feeling better once I got to my bed and got all my sweat-drenched clothes off. My wife noticed my skin was very red, then I started itching and noticed patches of hives, mostly on my trunk and around my waist and outer thighs. Severe symptoms were over and I took some benadryl to stop the itching and slept. This attack lasted no more than an hour and the hives were gone the next morning.
Anyways, I got referred to an allergist. The allergy tests were negative and I couldn’t recall any specific food trigger (though it was usually a few hours after dinner that it happened). I did some blood and urine work and my serum tryptase and other blood protein levels were a little bit high. I also tested negative for celiac and carcinoid tumors. He told me to take cetirizine every day and that completely stopped the attacks, even the occasional cramps and diarrhea.
I still don’t have an official diagnosis, but I suspect some kind of mast cell disorder. He suggested I see a hematologist to check for systemic mastocytosis but I didn’t follow up yet. I’m thinking of following up or looking for better treatment now as taking cetirizine all the time makes me chronically sleepy and constipated. I am thinking of switching to some kind of mast cell stabililizer but an afraid of having another attack if I stop the cetrizine. I really want to have something stronger than an antihistamine if I ever feel another attach coming on. I’d like to have an epinephrine prescription for an emergency but am afraid to ask.
Anyways, this is my story. I wish I had a clear diagnosis.
Anyways, the vast majority of episodes only went this far (cramping and small amounts of diarrhea for a brief period being the worst of it). However, in the past 4 years I have had 3 much more severe episodes. The most recent one was two years ago. It started with intestinal cramps and itchy palms as before, but I also began vomiting, sweating profusely, and having a horrible feeling like I was dying. I could not even attempt to stand up without becoming dizzy and collapsing. After passing out and hitting my head my wife came and helped me crawl to my bed. She asked if she should calk the ambulance and I said no because I seemed to be feeling better once I got to my bed and got all my sweat-drenched clothes off. My wife noticed my skin was very red, then I started itching and noticed patches of hives, mostly on my trunk and around my waist and outer thighs. Severe symptoms were over and I took some benadryl to stop the itching and slept. This attack lasted no more than an hour and the hives were gone the next morning.
Anyways, I got referred to an allergist. The allergy tests were negative and I couldn’t recall any specific food trigger (though it was usually a few hours after dinner that it happened). I did some blood and urine work and my serum tryptase and other blood protein levels were a little bit high. I also tested negative for celiac and carcinoid tumors. He told me to take cetirizine every day and that completely stopped the attacks, even the occasional cramps and diarrhea.
I still don’t have an official diagnosis, but I suspect some kind of mast cell disorder. He suggested I see a hematologist to check for systemic mastocytosis but I didn’t follow up yet. I’m thinking of following up or looking for better treatment now as taking cetirizine all the time makes me chronically sleepy and constipated. I am thinking of switching to some kind of mast cell stabililizer but an afraid of having another attack if I stop the cetrizine. I really want to have something stronger than an antihistamine if I ever feel another attach coming on. I’d like to have an epinephrine prescription for an emergency but am afraid to ask.
Anyways, this is my story. I wish I had a clear diagnosis.