beachcomber Posted June 16, 2015 Report Share Posted June 16, 2015 Hi all! Although I've been a member here for almost 2 years, this is my first post.I keep getting 1 red, itchy blotch somewhere on my neck or jawline. It will last about an hour then go away. It is very itchy and gets quite red. Sometimes there seems to be a small spot in the middle of it, other times not. I have been tested for mast cell issues and everything came back normal. I do take a daily antihistamine but it doesn't seem to help. I can't seem to link it to any particular food. I thought that it might be hormones but that doesn't quite fit either. The fact that it is always on my neck or jawline puzzles me. Any suggestions or help would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
ks42 Posted June 16, 2015 Report Share Posted June 16, 2015 I get this too! My POTS doc did say it could still be mast cell, even though my mast cell tests were negative, because unless you're in the middle of a flare when you're tested, you can get a false negative. My doc usually trials most people on mast cell meds (regardless of test results) to see if it works. I can't take mast cell meds, so we don't know for sure if that's what it is. But I had another doctor say that these isolated hives were a common side effect of "sympathetic discharge" - meaning, your sympathetic nervous system gets too active at that moment, you get a random hive. Don't know why they would always be in the same spot, but mine always are too. The third theory was that I had some hidden allergy (to food, environment, etc) so we're going through extensive allergy testing, but haven't found anything yet. Quote Link to comment Share on other sites More sharing options...
Nymph Posted June 16, 2015 Report Share Posted June 16, 2015 Interesting theories. I get these too on my neck. For me they are more like red, itchy streaks. I usually get them after a shower. I, too, take an antihistamine daily as I have many allergies. The sympathetic discharge idea seems likely to me because it's after a shower when I would have more pooling. Yesh - I don't know - Why the neck? Quote Link to comment Share on other sites More sharing options...
Arez2row Posted June 16, 2015 Report Share Posted June 16, 2015 I get these as well! I get what looks like a blotchy rash, or a raised rash with fine bumps all over my face, neck and chest. I don't know what triggers the rashes.. I am going to be seeing an Immunologist/Allergist who specializes in mast cell disorders. The only thing that I have tried is benadryl, but it makes me dopey. Quote Link to comment Share on other sites More sharing options...
Guest Posted June 17, 2015 Report Share Posted June 17, 2015 My blood pressure goes very low, while my pulse rate is high AND I get these hives with little red spots in the middle too. Not many, but some and at differing times.I take Northera 3x a day, 300 mg. each time to keep me from dizziness....but with a pulse rate in the 120's I am going to start taking it just 2x daily. Your thoughts? Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 17, 2015 Report Share Posted June 17, 2015 This paper is long but it is written by one of the leading mcas docs. It explains how mcas is diagnosed and why the diagnostic tests available are not necessarily the best or only way of diagnosing mcas. Thought it might be helpful to some of you.http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm Quote Link to comment Share on other sites More sharing options...
AngieP Posted June 17, 2015 Report Share Posted June 17, 2015 During recent flare ups I've been getting a rash on my upper neck too. It's raised and very itchy.My doctor has ruled out mast cell issues as test results came back normal. I don't know what is triggering it.Thanks for the link Katybug - will take a look at this article. Quote Link to comment Share on other sites More sharing options...
Kkb1216 Posted June 17, 2015 Report Share Posted June 17, 2015 I get a rash on my face, arms and chest. I happened to get one while in a doctor's office today, and he called it hot, red and swollen. Other than that, I just have another set of labs to do So I can commiserate, but have no solution to offer. It is good to know I am not in this part of the boat alone! -K Quote Link to comment Share on other sites More sharing options...
LillyBee Posted June 17, 2015 Report Share Posted June 17, 2015 If you have hyper POTS, one of the symptoms is hyperadrenergic hives. I get them on my face and neck and they don't respond to topical or oral antihistamines. It's one of my first warning signs that I'm about to take a nosedive. I also have facial flushing as a warning sign. It's my signal to hightail it home (or to the bedroom) and get prone. Heat, food and stress are some of the triggers...including heat from the shower. Sometimes, if I take Klonopin, or if it's time for my Clonidine, I can reduce the severity of the episode that follows. Quote Link to comment Share on other sites More sharing options...
Nymph Posted June 17, 2015 Report Share Posted June 17, 2015 Thanks for the article, Katy!Personally, I wonder whether it would even be worth it to me to be tested for MCAD. I already take a daily antihistamine. I'm thinking of a trial of nasocrom, because I can't use my nasal steroid routinely anymore. I have used an H2 blocker in the past but don't anymore thanks to being gluten free. I have tried a low histamine diet and did not notice any difference. I am so tired of going to doctors! Can anyone think of a good additional reason to confirm this dx? Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 17, 2015 Report Share Posted June 17, 2015 Yes. There is quite a few more drugs that have been found to be useful as part of a mast cell protocol. At least 3 are prescription. And there can be complications such as anaphylaxis and contraindications with certain meds. It is important to be able to tell other medical professionals if you do have mcas. Quote Link to comment Share on other sites More sharing options...
Arez2row Posted June 17, 2015 Report Share Posted June 17, 2015 Can mast cell occur in milder forms without anaphalaxis? Quote Link to comment Share on other sites More sharing options...
beachcomber Posted June 17, 2015 Author Report Share Posted June 17, 2015 Thanks everyone for your responses! As luck would have it, I did have one of my red blotches when I was doing the 24hr histamine test and I was able to have my blood drawn within 12hrs of this so I would hope that if there was anything to catch it would have been caught. I do understand that there are other things that could have affected the results,so I haven't completely ruled out MCAS as a possibility. Also the Imunologist felt that my symptoms weren't 'severe' enough to be MCAS.?.Has anyone ever heard of Cholinergic Urticaria? I'm wondering if this might be a possibility. I came across this while doing a search for 'sympathetic discharge and hives'. Cholinergic Urticaria involves acetylcholine and the parasympathetic system. I do have hyperadrenergic POTS so maybe could this be a compensatory mechanism that results in a release of acetylcholine when my norepinephrine is high or when my temp is increasing? Any thoughts? Quote Link to comment Share on other sites More sharing options...
beachcomber Posted June 17, 2015 Author Report Share Posted June 17, 2015 Thank you Katie for the article! You always share get information! Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 17, 2015 Report Share Posted June 17, 2015 Yes, mcas can occur without anaphylaxis. There is a broad spectrum of signs and symptoms. There is an amazingly complete list of all of these in the article I linked above. Quote Link to comment Share on other sites More sharing options...
Arez2row Posted June 17, 2015 Report Share Posted June 17, 2015 Thanks Katybug Quote Link to comment Share on other sites More sharing options...
LillyBee Posted June 17, 2015 Report Share Posted June 17, 2015 Thanks everyone for your responses! As luck would have it, I did have one of my red blotches when I was doing the 24hr histamine test and I was able to have my blood drawn within 12hrs of this so I would hope that if there was anything to catch it would have been caught. I do understand that there are other things that could have affected the results,so I haven't completely ruled out MCAS as a possibility. Also the Imunologist felt that my symptoms weren't 'severe' enough to be MCAS.?.Has anyone ever heard of Cholinergic Urticaria? I'm wondering if this might be a possibility. I came across this while doing a search for 'sympathetic discharge and hives'. Cholinergic Urticaria involves acetylcholine and the parasympathetic system. I do have hyperadrenergic POTS so maybe could this be a compensatory mechanism that results in a release of acetylcholine when my norepinephrine is high or when my temp is increasing? Any thoughts?Yep, that's what I was talking about, forgot the name, though. Of all the things I've lost, it's my mind I miss the most Quote Link to comment Share on other sites More sharing options...
artluvr09 Posted June 17, 2015 Report Share Posted June 17, 2015 I get a weird rash that started in october 2014. little red not raised patches like some are penny sized and some are nickel sized and they are on my arms and they get worse after my shower. Its weird after i cool off some of the spots fade but come back after i am hot or in the shower. they get itchy when hot. Quote Link to comment Share on other sites More sharing options...
yogini Posted June 20, 2015 Report Share Posted June 20, 2015 While many people that have POTS have co-conditions like mast cell which cause rashes, I do not think that a rash is a "typical" symptom of POTS. It's good that you are talking to your dr to figure it out. Quote Link to comment Share on other sites More sharing options...
shathaway0811 Posted June 21, 2015 Report Share Posted June 21, 2015 That happens to me all the time!!!! Often times it's triggered by heat/temp. change, sometimes irritation based on contact with fabric or whatever, and sometimes it just randomly decides to happen. Always on the side of my face or on my neck. Super annoying. I usually take a benadryl and am fine Quote Link to comment Share on other sites More sharing options...
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