Histamine intolerance - anyone got that?
- Thread starter Athene
- Start date
Histamine
Yep. I take 10 mg of loratadine everyday. If not, tons of "new" allergic reactions to some food (avacodos, melons); itchy lips/mouth and mildly swollen throat
Sometimes I would wake with a pronounced swollen area on my upper lip (focused in an area of about 0.5 square inches like I've been stung by a bee), etc.
I've never had allergies but my allergen skin tests this past summer were 4+ for nearly everything. My IgE levels were high (6 or so times the upper limit).
Yep. I take 10 mg of loratadine everyday. If not, tons of "new" allergic reactions to some food (avacodos, melons); itchy lips/mouth and mildly swollen throat
Sometimes I would wake with a pronounced swollen area on my upper lip (focused in an area of about 0.5 square inches like I've been stung by a bee), etc.
I've never had allergies but my allergen skin tests this past summer were 4+ for nearly everything. My IgE levels were high (6 or so times the upper limit).
One of the things that has been remarked upon in my history is my extremely high total IgE.
I have always had a lot of allergies. (I'm allergic to bears - how many people know that
)
I take a benadryl at night to sleep but think it probably does more for me than just help sleep.
I have also taken non-sedating antihistamines in the past when I could afford them and found them helpful.
Athene, I really appreciate your presence on the forum. You have consistently raised issues which resonated very strongly with me. I am very grateful.
You, too, WBS!
I have always had a lot of allergies. (I'm allergic to bears - how many people know that
)I take a benadryl at night to sleep but think it probably does more for me than just help sleep.
I have also taken non-sedating antihistamines in the past when I could afford them and found them helpful.
Athene, I really appreciate your presence on the forum. You have consistently raised issues which resonated very strongly with me. I am very grateful.
You, too, WBS!
Dermatographism - me too
Hi Samuel, I developed dermatographism too, and have found massive relief with Doxepin first, then Amitriptyline (not widely recognized - it's also a powerful antihistamine). I've seen similar patient reports on dermatographism & Amitriptyline some of the chronic Parvovirus B19 forums. PVB19 symptoms are known to often be worse late winter/early spring, and my dermatographism has indeed tended to be worst then. At its worst, pre-diagnosis, I was getting 3-4 hours of sleep/night due to the horrendous itching. On one of the Parvovirus B19 forums one little kid with PVB19 was telling his mom he wanted to die, the itching was so bad. Insane crawling sensation especially on face, scalp for me. I actually got sent to a tropical diseases travel clinic, they thought I might have had parasites from my prior travels. If I miss a dose of Ami, I can't sleep from the itchiness. And interestingly each time my immunoglobulin levels are higher from my antibody therapy for the PVB19, my dermatographism/itching subsides too, and I am able to reduce my amitriptyline dose. In year 4 of this itchiness I finally found a competent dermatologist who did the skin-scratch test and pronounced it "dermographism or dermatographism". If you try this on yourself, better get a partner to scratch your back (literally). So much of our skin gets desensitized by touch and the back is an area that isn't as constantly overstimulated. So the "writing on skin" effect is more pronounced there, and you'll see your scratch mark turn red, then persist. (see pic below)
Ironically I thought my dermatologist was dead wrong when she first made the diagnosis, but I dutifully took the Doxepin she prescribed and was flabbergasted that I could sleep itch-free that very first night. The difference in the itchiness was literally night and day. And kind of like the reverse-placebo effect, because I was sure she was wrong From my experience, both Doxepin, then Ami MUCH more effective antihistamines than Benadryl.
OK, this is cool. Downloaded from Wikipedia:http://en.wikipedia.org/wiki/Dermatographic_urticaria
Dermatographic urticaria (also known as dermographism, dermatographism or "skin writing") is a skin disorder seen in 45% of the population and is one of the most common types of urticaria,[1] in which the skin becomes raised and inflamed when stroked or rubbed with a dull object.[2]
Presentation
The symptoms are thought to be caused by mast cells in the surface of the skin releasing histamines without the presence of antigens, due to the presence of a weak membrane surrounding the mast cells. The histamines released cause the skin to swell in the affected areas.
There are some really interesting crossovers with dermatographism and ME/CFS:
Hi Samuel, I developed dermatographism too, and have found massive relief with Doxepin first, then Amitriptyline (not widely recognized - it's also a powerful antihistamine). I've seen similar patient reports on dermatographism & Amitriptyline some of the chronic Parvovirus B19 forums. PVB19 symptoms are known to often be worse late winter/early spring, and my dermatographism has indeed tended to be worst then. At its worst, pre-diagnosis, I was getting 3-4 hours of sleep/night due to the horrendous itching. On one of the Parvovirus B19 forums one little kid with PVB19 was telling his mom he wanted to die, the itching was so bad. Insane crawling sensation especially on face, scalp for me. I actually got sent to a tropical diseases travel clinic, they thought I might have had parasites from my prior travels. If I miss a dose of Ami, I can't sleep from the itchiness. And interestingly each time my immunoglobulin levels are higher from my antibody therapy for the PVB19, my dermatographism/itching subsides too, and I am able to reduce my amitriptyline dose. In year 4 of this itchiness I finally found a competent dermatologist who did the skin-scratch test and pronounced it "dermographism or dermatographism". If you try this on yourself, better get a partner to scratch your back (literally). So much of our skin gets desensitized by touch and the back is an area that isn't as constantly overstimulated. So the "writing on skin" effect is more pronounced there, and you'll see your scratch mark turn red, then persist. (see pic below)
Ironically I thought my dermatologist was dead wrong when she first made the diagnosis, but I dutifully took the Doxepin she prescribed and was flabbergasted that I could sleep itch-free that very first night. The difference in the itchiness was literally night and day. And kind of like the reverse-placebo effect, because I was sure she was wrong
From my experience, both Doxepin, then Ami MUCH more effective antihistamines than Benadryl.OK, this is cool. Downloaded from Wikipedia:http://en.wikipedia.org/wiki/Dermatographic_urticaria
Dermatographic urticaria (also known as dermographism, dermatographism or "skin writing") is a skin disorder seen in 45% of the population and is one of the most common types of urticaria,[1] in which the skin becomes raised and inflamed when stroked or rubbed with a dull object.[2]
Presentation
The symptoms are thought to be caused by mast cells in the surface of the skin releasing histamines without the presence of antigens, due to the presence of a weak membrane surrounding the mast cells. The histamines released cause the skin to swell in the affected areas.
There are some really interesting crossovers with dermatographism and ME/CFS:
- Found in 4-5% of the population. This could be just coincidental of course, but might there be an XMRV link?
- Can be associated with antiphospholipid antibody syndrome, a known complication of viral infection, including parvovirus B19
- Can also be associated with Raynaud's phenomenon - another auto-immune vascular response known to be associated with chronic PVB19/ME/CFS.
- Also note some of the literature describes dermatographism as a cutaneous (skin) vascular response. And PVB19 is known to attack the endothelium (inner lining) of blood vessels.
- You can see more if you look up "parvovirus" ( or "virus") and antiphospholipid syndrome on the National Library of Medicine's PubMed search engine: http://www.ncbi.nlm.nih.gov/sites/entrez .
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MAST cell disorders were found in around 40% of 'hyperadrenergic' POTS patients just as an aside.
Athene, I have a severe histamine intolerance, too. It waxes and wanes but is always worse around the monthly cycle which I read is due to the slowed decomposition of histamine during that time.
I don't get any skin symptoms though, except for little blisters on the tongue. For me excess histamine causes migraines, heart racing, stomach cramps, vomiting and diarrhea and is always relieved by an anti-histamine.
I am often wondering if taking a mast cell stabilisator would improve some of my CFS symptoms. None of these is OTC so I will have to convince one of my Docs to give that a try.
I don't get any skin symptoms though, except for little blisters on the tongue. For me excess histamine causes migraines, heart racing, stomach cramps, vomiting and diarrhea and is always relieved by an anti-histamine.
I am often wondering if taking a mast cell stabilisator would improve some of my CFS symptoms. None of these is OTC so I will have to convince one of my Docs to give that a try.
Yep I have the skin thing, but it come and goes.
I was diax'd MCS.
I take bendryl as it seems to help with sinus stuff, and itchies.
When I'm well I get bit by mosquitoes, if someone has an animal with fleas, they eat me alive.
When I'm ill they leave me alone.
I was diax'd MCS.
I take bendryl as it seems to help with sinus stuff, and itchies.
When I'm well I get bit by mosquitoes, if someone has an animal with fleas, they eat me alive.
When I'm ill they leave me alone.
Thanks
Athene - thanks for the post. My wife has seen enough that when I say something is going on her first response is no longer, no, that's probably just...
I've been complaining of 'a histamine issue' for six months. After 3-4 weeks she believed me when I woke with huge raised red areas on my upper lip. Last night when I mentioned this thread she just said 'wow.' Then, while we were laying around before bed she noticed all of the huge red areas on my feet/lower legs. She said she's noticed them for a long time (years) all over my body but never said anything.
It's not like dermatographism (parvofighter- that picture is pretty cool) but this is definitely something I'll be bringing up with my doc as I still have periods where my legs and arms are itchy and it sounds like Doxepin might be more effective than Benadryl (I tried Amitriptyline at low doses for headaches and had some unfortunate side effects).
Athene - thanks for the post. My wife has seen enough that when I say something is going on her first response is no longer, no, that's probably just...
I've been complaining of 'a histamine issue' for six months. After 3-4 weeks she believed me when I woke with huge raised red areas on my upper lip. Last night when I mentioned this thread she just said 'wow.' Then, while we were laying around before bed she noticed all of the huge red areas on my feet/lower legs. She said she's noticed them for a long time (years) all over my body but never said anything.
It's not like dermatographism (parvofighter- that picture is pretty cool) but this is definitely something I'll be bringing up with my doc as I still have periods where my legs and arms are itchy and it sounds like Doxepin might be more effective than Benadryl (I tried Amitriptyline at low doses for headaches and had some unfortunate side effects).
Hey, I rec'd an email this am regarding this video called "Mast Cells Disrupt the Blood-Brain Barriers and Contribute to Autism by Theoharis Theoharides". Some parents are having a discussion on the difference between food allergies and food intolerance and what to test (and what we should eat). Anyway, if you have time, please try watching this. I am new at the "Mast Cell" thing. So much to learn, so little time.
Here is the linky:
http://ec2-174-129-232-51.compute-1...-contribute-autism-theoharis-theoharides-md-p
Here is the linky:
http://ec2-174-129-232-51.compute-1...-contribute-autism-theoharis-theoharides-md-p
I forgot to add that he discusses the increased levels of IL-6 which is also increased in ME/CFS patients after Exercise. Here is a link to why exercise is bad for ME/CFS patients:
http://chronic-fatigue-syndrome.suite101.com/article.cfm/cfsme_and_exercise
http://chronic-fatigue-syndrome.suite101.com/article.cfm/cfsme_and_exercise
One of the things that has been remarked upon in my history is my extremely high total IgE.
I'm allergic to bears - how many people know that )
I'm allergic to bears - how many people know that
)
I don't have many anaphlaxis type reactions, itchy throat etc but have weird reactions to tonns of stuff. I don't take anti-hists though as conversley enough one of my worst reactions was to atarax. I take a neutralizing vaccine to histamine which helps a little.
Hey Helsbells,
Many, many years ago, I interviewed a bear trainer, Deiter, with a small travelling circus. He let me interact with a feisty cub and then we went with a grown bear, Bianca, on a leash through the streets of Toronto one night.
Bianca and Deiter were very close and Deiter's wife was sometimes jealous of the time he spent with Bianca. They - Deiter and Bianca - often went out for a beer together. In fact, they went to the bar at the top of the CN Tower on that fateful night when I discovered I was allergic to bears.
I don't actually approve of bears being used in this way but I must admit that Bianca seemed quite happy and was not altered in any way: she had all her teeth and her long sharp claws which Deiter called her "needles". The needles were the reason I was not allowed to go up in the glass elevator with Deiter and Bianca - no one was - and had to meet them up there. I was ok with that; I'm afraid of glass elevators that go shooting up towers and I was quite happy not to share the experience with a bear...
ACHOOOOO!
Many, many years ago, I interviewed a bear trainer, Deiter, with a small travelling circus. He let me interact with a feisty cub and then we went with a grown bear, Bianca, on a leash through the streets of Toronto one night.
Bianca and Deiter were very close and Deiter's wife was sometimes jealous of the time he spent with Bianca. They - Deiter and Bianca - often went out for a beer together. In fact, they went to the bar at the top of the CN Tower on that fateful night when I discovered I was allergic to bears.
I don't actually approve of bears being used in this way but I must admit that Bianca seemed quite happy and was not altered in any way: she had all her teeth and her long sharp claws which Deiter called her "needles". The needles were the reason I was not allowed to go up in the glass elevator with Deiter and Bianca - no one was - and had to meet them up there. I was ok with that; I'm afraid of glass elevators that go shooting up towers and I was quite happy not to share the experience with a bear...
ACHOOOOO!
Koan, That is a GREAT story - I hope you plan to write your memoirs!
I was wondering if anyone has noticed any reduction in allergy symptoms? I usually have terrible seasonal allergies at this time of year. Wisteria is in full bloom here and draped through the trees all over town - I call it the "purple clouds of death" because that is usually when the pollens I am allergic to come out to play and I am a bleary-eyed, wheezing wreak. This year, while I feel terrible with ME/CFS, I seem to be having no allergy symptoms apart from some postnasal drip and an occasional sneeze. I can hardly believe it. I read on another thread about folks who don't catch colds with ME/CFS but allergies are an entirely different ballgame, right? I'm not complaining - just mystified.
I was wondering if anyone has noticed any reduction in allergy symptoms? I usually have terrible seasonal allergies at this time of year. Wisteria is in full bloom here and draped through the trees all over town - I call it the "purple clouds of death" because that is usually when the pollens I am allergic to come out to play and I am a bleary-eyed, wheezing wreak. This year, while I feel terrible with ME/CFS, I seem to be having no allergy symptoms apart from some postnasal drip and an occasional sneeze. I can hardly believe it. I read on another thread about folks who don't catch colds with ME/CFS but allergies are an entirely different ballgame, right? I'm not complaining - just mystified.
I can't believe that is actually a better story than I imagined, being in the UK interacting with bears seems impossibly rugged but the most glamorous of ways. That is a fantastic storyHow do your reactions strike? Mine tend not to be that violent tends to increase autonomic dysfunction primarily but I can get more standard reactions. But weirdly never had hay fever, asthma or tendency to broncitous (sp) etc
that was a great story koan..thanks.
i have ridiculous seasonal allergies that have gotten worse over the past few years.it doubles my brain fog and i want to put my eyes in a cup of water.
the writing on the skin happened to me when i was 15. i was sick for a few days then went out.it was winter and by the time i got to the subway my face was hurting amd itchy at the same time.i looked at my reflection in the glass and i had welts wherever the cold hit my skin.went to the hospital and had all the docs excited by putting my hand under cold water so they could see it grow like a balloon.
they just told me i had a lot of histamine...so i would scratch myself and spell out my friends names.it went away about 15 years ago.
i thought that was odd at one time in my life now it's just another day...lol.
i have ridiculous seasonal allergies that have gotten worse over the past few years.it doubles my brain fog and i want to put my eyes in a cup of water.
the writing on the skin happened to me when i was 15. i was sick for a few days then went out.it was winter and by the time i got to the subway my face was hurting amd itchy at the same time.i looked at my reflection in the glass and i had welts wherever the cold hit my skin.went to the hospital and had all the docs excited by putting my hand under cold water so they could see it grow like a balloon.
they just told me i had a lot of histamine...so i would scratch myself and spell out my friends names.it went away about 15 years ago.
i thought that was odd at one time in my life now it's just another day...lol.
N
I don't know how much this would help if there were to be a severe histamine intolerance, but it might help for those that experience less severe symptoms. There's a product called Allerase, and it's designed for those who are amylase deficient. This deficiency results in sinus congestion, itchy watery eyes, blood sugar issues, headaches, etc. It also can result in bad allergies. Allerase works to help the body maintain normal histamine levels, and when taken properly, it can help with allergies and other amylase deficiency issues. Something worth looking into. I know of people who claim it really helps them a great deal.
Thanks for posting this .. Especially the info on autism and Allerase. I may try this too. I've liked the other Enzymedica products that I've tried ... come to think of it, I wonder what the Enzymes for autism group has to say about Allerase. You have to join but here's the link ... http://health.groups.yahoo.com/group/EnzymesandAutism/
Maybe googling autism and Allerase would work too ...
Koan,
Great bear story ...
ETA. I forgot ... my allergies were totally out of control (constant runny nose, sneezing, watery eyes, etc) when I was ovulating last month but before that and now that things have calmed down and I'm back to my post menopausal self, I'm not sneezing or anything ... AGAIN ... I don't even need any allergy meds. Damn those female hormones !!!
I just wonder if my orthostatic intolerance is a result of allergies though ... I read that mast cells can be linked to dysautonomia. Hmmm ...
Maybe googling autism and Allerase would work too ...
Koan,
Great bear story ...
ETA. I forgot ... my allergies were totally out of control (constant runny nose, sneezing, watery eyes, etc) when I was ovulating last month but before that and now that things have calmed down and I'm back to my post menopausal self, I'm not sneezing or anything ... AGAIN ... I don't even need any allergy meds. Damn those female hormones !!!
I just wonder if my orthostatic intolerance is a result of allergies though ... I read that mast cells can be linked to dysautonomia. Hmmm ...