Hi Guys,
I feel that maybe if someone can research on this topic, we can find a cure to this problem. My reason for thinking so? I’ve a strong reason for it. Whenever you are stressed/exercising/sweat adrenaline is released in your body. And I think adrenaline has got something to do with the hives. Much research is needed along these lines since only a small percentage of us(not all people) get these hives when adrenaline is released.
I hope may be someone who can help us stumbles on this post.
-Sanguine
mikemorse34 says
Hello Sanguine,
I think it’s strange because I’ve gone through numerous epinephrine injections because my attacks send me into shock. I get just as many hives in my airways so I need it to keep breathing.
Epinephrine is adrenaline, so to speak. The flushing and hives are due mostly to histamine and other substances. The question could be iffy because it takes adrenaline to help out in severe cases.
I believe the culprit to be serotonin. Serotonin should be used by your brain, but for us hiveys, we get serotonin related issues also. Excess serotonin in your bloodstream is not what skin is used to. Since excersize and sunshine give off serotonin, which is powerful stuff, I believe it along with histamine causes the flush. Now, I do have diagnosed mastocytosis, which is causing the uticaria. It’s systemic but the uticaria is the most troubling physical part. I did some research and found that histamine is much more potent than we think, as is serotonin in your skin. It belongs upstairs in your noodle. Adrenaline actually stops my severe reaction. Also, heparin is released in an attack. If you were to have a clotting test done, as I have, in the middle of an attack, it would show plenty of platelets but a slow clotting time. I’ve had a clotting test done in both an attack state and normal state, and my normal state I clotted just fine.
The real culprit behind this are the mast cells that cause the cells to release these chemicals. We don’t know why, but it can affect your adrenals, stomach, spleen, and liver in addition to your skin. I think the goals are to figure out why mast cells become overactive. I believe it’s a cell mutation that is ‘out of the blue’ or caused by a medication, other disorders, or environmental toxins. It’s autoimmune, so something started it. I think it’s the serotonin and histamine causing the visible attack though.
Brainfried77
mikemorse34 says
I had left a pretty long comment to this question yesterday, however it may have not been approved due to my excessive rambling. lol. Basically, for myself and others here, adrenaline is our friend in the form of Epi Pens. It stops my attacks from progressing to a systemic reaction that causes orthostatic hypotension, and swelling of my airways. The hives on my body really don’t bother me much. It’s the internal ones that wreak havoc. From the research I’ve done, I learned that histamine and heparin are far more potent than one would think.
The histamine release causes a cascade effect that is due to the excessive activation of mast cells. Mast cells are funky beasts that those of us living with uticaria have an excess amount of. The hormones that come into play during an attack are wide-ranging and potent. I do suffer from systemic mastocytosis which is the cause of my uticaria. I also have very severe epilepsy that causes dangerously long bouts of status epilepticus. I believe that my focus is now on the underlying cause of our chemical imbalances. Having epilepsy is a life-long condition that can only be controlled or dealt with by toxic medications and/or major surgery. There is no cure, and I came to terms with that many years ago. Other illnesses, like uticaria, trigger my seizures so I’m really interested in finding how to beat this from the source. Mast cell activation. Whether it’s histamine, cytokines, or adrenaline is the symptom but not the cause.
Having had the diagnosis of mastocytosis, I have been able to work with my behavioral health, neurology, dermatology, and immunology team about the activation of mast cells. The number of chemicals, hormones, and neurotransmitters involved is pretty astounding!
I’ve found that exercising, while painful and difficult, is my biggest ally. It has started to desensitize me because the endorphin release causes feelings of well being that make the hives seem to itch less because dopamine is activated. I do have to be very cautious, and make sure my Epi is close by, however my body craves better foods and leads to healthier eating. Even if we don’t find a cure in our lifetimes, we can continue to take uticaria as a tool to learn more about how our bodies work.
In the meantime, I’m going to focus on curing it by learning more and more about the mast cell activation process, and why it happens to us. That’s the root. The ‘tree’ is all the branches that are physically felt or visible to the naked eye. Diet, exercise, emotional health, are what we can do to combat the branches that scratch us, so to speak. The branches are the hormones and chemicals, but I want to check out those roots.
My exercise routine is pretty wimpy compared to what I’m used to, so I had to learn that you don’t need to work yourself into a sweaty hot mess. I would start or taper down to a yoga or tai chi routine first. It’s just as effective as aerobic workouts, without the pain inducing sweat.
-Mike
Hivesguy says
Hey MikeMorse34,
I just wanted to write a quick note telling you that I greatly appreciate your comments and contribution to this site. I actually approved all of your comments, but it did take a day or so. I do all of these manually, and occasionally I do get behind with other things.
Also, sometimes I may approve a comment or post, but it may not show up immediately due to browser caching.
I always approve comments unless they contain obvious spam or something highly inappropriate. So please don’t think you’ve done something that I felt was inappropriate.
mikemorse34 says
Thank you, Hivesguy!
I used to manage the epilepsy board on a major website, so I totally understand. I had left my reply yesterday on my cellphone, so I wasn’t sure if it even went through is all.
I have to admit that I stopped going on health boards after I bowed out of the epilepsy site due to burnout, but I really liked everything that you had posted. It was a great help in explaining to my family why this summer has been so rough for me. I thought that I was just a big baby! I’m sure that you, and many others have been through similar experiences when it comes to the isolation factor that comes along with this. Since having to go on disability due to seizures, organic gardening was my release. I was live in a small farming community without public transportation, so being outside and having my daily visits from produce buyers and the other local farmers, family included, was my way to stay connected to the outside world. Having to give that up this summer was tougher than this *thumbs pointed at myself* farm boy was expecting. I kept getting told that I had anxiety/depression because the attacks are so similar to a panic attack, and one of the clues to a depression disorder is when someone stops doing the things they were once interested in. Trying to explain that I simply could not spend all day in the hot New Mexico sun at high altitude with a stronger UV light was why I didn’t garden was met with sneers and laughter.
It took almost 8 months and many different psychiatry visits before I found a good dermatologist who was able to list my cholinergic side effects without me even saying a word. He found a good psychiatrist who was familiar with this, and voila! LOL
I really appreciate that you let me ramble on so, and all of the self-help remedies. Having had epilepsy, cancer, and now this was tough but manageable. My psych even cancelled my next visit after I told him about this board and its helpfulness. Much thanks to people like you who come out and simply say ‘You’re not alone’. I believe that many people here could indeed have mast cell disorders that can eventually become systemic, such as mine. I am to the point to where my pigmentosa has become malignant, and I don’t want to scare anyone, but I think that the more you know, the better. Whether it be only hives and flushing, or constitutional like mine, the tips you provided are still the only way to feel more comfortable and at ease. I’ll let the docs handle the uticaria pigmentosa lesions the way they see fit, but in the meantime, you’ve been a huge help.
-Mike
Hivesguy says
You’re welcome, Mike!
I’m sorry to hear of your difficulty dealing with this over the past summer. I’m also sorry to hear about the fact that you suffer with seizures and that you’re even battling cancer. I can’t imagine how hard that must have been dealing with the mental aspects of all of that, but it sounds to me like you’re hanging in there and not giving up. You’re definitely a fighter.
I’m glad you’ve found some help with this site. You’re definitely not alone in your struggles. I pray that you continue to find ways to ease your symptoms.
Anonymous says
Hi guys i have been suffering from this hateful diseases for 2 years. during winter i restrict myself at home because could not tolerate at Sunlight and heat…But, during summer i get absolutely normal and can go on sunlight and can tolerate heat and exercise. However, one strange experience i have observed , i want to share here might be fruitful for other sufferers too. I am living in Quetta city of Balochistan which is a cold, dry and high altitude region here i got my first hives during winter. While, In the second year of my hives attack when i travelled from Quetta to Karachi, which is a coastal and moist area of Sindh Pakistan. Rather being a more warm climate then Quetta but, to my surprise i didn’t got a single hives even there although i perspired a lot all the day. So, now i come to believe that this hives was due to extreme dryness of skin. when skin gets dry there something goes wrong with our immunity.. All in all, climate has the greatest effect with this disease….
Naeem Baloch
Hivesguy says
Thanks for taking the time to share your tips and experiences, Naeem. It’s interesting how climate seemed to impact you so much. I hope your hives continue to stay away.
Jerri falls says
Hi I’m hive women ,
Sept 28 2014
I’ve dealt with extreme itching mostly with small hives on arms, for 20 years. I have lived in cold climates than colder and the went to extreme opposite over 100 everyday for months, dry or humid,found really no different, I’ve been the dry skin wrote with dermatologist and food allergies ,been highly tested, they were actually surprised I was not allergic to anything . Here’s my thoughts, on what I’ve discovered over my 60 years.
1) there’s way to much chemicals used everywhere , farming , especially Christmas trees and grass seed
2) the chemicals people use in there homes and even on our bodies, ( perfume is made form petroleum ) toxic , all plays havoc on our adrenal glands
3) and of course stress of daily life
4) medicines
5) pollution
After that being said , all these factors ,drain your adrenal glands of adrenaline, so when you have that trigger ,that needs adrenaline , basically your adrenaline tank is on empty. So from the research I’ve done it’s not to much adrenaline, but the lack of.
My fix in the past has been Allegra and hydroxyzine pamoate and ice packs really help with the itching.
After a trip to a naturopath doctor ( have seen a endroconoligist for years) he diagnosed me with adrenal exhaustion ,put me on Adrenacort ,which is only obtained thru a naturepath , I’m sure there’s some over the counter stuff from a good health food store.
I’ve moved away from farming, but still can get a reaction if I go back around it, and some when they spray for bugs and weeds where I live now.
But everything I use has no perfumes or chemicals , and use as little as possible to keep up on my house.
And part of it all, over the years is finding your own triggers
Hivesguy says
Hey Jerri,
Thanks so much for sharing your thoughts and experiences.
mikemorse34 says
I also saw a naturopath about this, and they also said that I had adrenal fatigue. He is really a very kind, and caring doctor who is looking into the adrenal fatigue that has been gaining acceptance. Unfortunately, I was having a really bad reaction during that time, and desperate to find relief. He gave me a supplement called AdreCore. As things progressively got worse, I decided to look into the supplement and found that it contained heavy amounts of niacin and the amino acid L-histidine. Niacin is a very necessary nutrient, but caused me to flush very badly and L-histidine is the precursor to histamine! The supplement sent me into shock. I am in agreement that the foods we eat and the air we breathe are a huge factor, but definitely research any supplement you get. The last thing I needed was a vitamin containing histamine.
I’m not trying to slam your input, nor my naturopath’s, because I did get a great diet plan from him that has helped tremendously. I just want people like us to take extra precautions on natural supplements and the foods they eat. I was slightly discouraged to find out that many of these naturopaths hold stock in the supplement companies that they use :(. I think that they truly mean the best, but I would encourage people to double check any diagnosis and supplement with a ‘western’ doctor as well. I use a 50/50 approach to healthcare. It’s always helpful to have the opinions of both, and draw up our health plan according to natural and pharmaceutical methods.
One thing that my MD, who does acupuncture in his private practice so he knows a lot about eastern medicine, told me was this….”The excess mast cell burden that all of us who have any type of uticaria have is what wears our adrenals out, not the other way around.” While I think the ‘Adrenal Fatigue’ theory is interesting, I believe that it’s based upon a fad, similar to how they used to blame most everything on ‘Thyroid Malfunction.’ I also believe though that they are 100% correct in focusing on how negative stress and poor diet are becoming far too prevalent these days. I try to pull the good and bad out of each western or eastern theories, and mold a good plan involving both.
Tachion says
Yo Mike, i would like to ask you a few questions…
My english isnt perfect, but i think you will understand me.
since you have epilepsy and cancer, along cholinergic urticaria, thats three problems at once. I suppose, the urticaria is, mentally, the least problem for you (?), but i am interested in your character. Do you have a sense of persecution? Do you reject life? Do you feel that you are in a great struggle? Are you self violent?
Also, are you deeply hurt by anything in your past, maybe in childhood? Is something eating you inside? Are you carrying some bitterness deep inside?
Do you have small, hidden fears? Are you making mountains out of molehills?
I am sorry if I asked too many questions, but I think that most (or all) diseases are coming from our heads, from our thoughts.
I believe that there are certain types of thoughts/thinking procesess, that are damaging our health. My biggest problem is (was) severe form of cholinergic urticaria (without swelling of my airwaves), but i think i managed to heal myself.
Best wishes.