January 10, 2015 at 6:14 am #770insert-interesting-usernameParticipant
Am a newbie to the forum – this is my first post. Apologies if this post was better suited to another section (was debating between posting in cardiovascular or skin..)
just a quick bit of background info on me:
I’m from Australia, I’m 26 years old; early last year I saw a Rheumatologist who diagnosed me with JHS/EDS3, ‘instability / dysfunction of the autonomic nervous system’ – (not sure what exactly is going on), as well as fibromyalgia and Raynauds.
I tend to get bad flushing episodes – usually triggered by exposure to heat, whilst other times its harder to tell what the trigger is. The flushed area will feel quite warm and sensitive, and I can become quite tired. I also tend to sweat a large amount under my arms during these episodes – and sometimes also get slightly sweaty feet (however feet can feel freezing cold – if anything!).
I do have issues with vasodilation and vasoconstriction – as well as blood pooling in feet, legs and hands – which i’m guessing is due to my ‘stretchiness’.
I also tend to be prone to fairly strong livedo riticularis and have a mottled look to my skin on my upper arms, hands and legs, and occasionally chest and feet as well.
Blood vessels seem to dilate and cause flushing when in direct, hot sun – or in hot weather – also sometimes when walking around, or when stressed.
I had a period of about 6 months – 8 months where flushing episodes would occur daily – to a few times a day – when my health wasn’t too good.
I’m much better than I was early to mid last year, but still feeling a bit ‘average’ in general.
Since receiving a number of diagnoses last year – I’ve just put the large patches of sudden red flushing down to temperature changes – either in my environment or perhaps body temperature as well (I feel like my thermostat is not only off-the-wall-crazy, but completely non-functional!). I have had flushing on my shoulders, on my arms, on my face, and on my ears. It can happen in all these places at once, or each individually -e.g. just face, just ears or one ear etc. all feel warm to touch, and skin is sensitive.
Every so often, though, I notice I get quite odd flushing, mainly on my face. one side of my face will turn bright read, fell very hot and sensitive, whilst the other remains a reasonably normal colour.
I cant figure out what might be causing this…
It can happen whilst just sitting down to watch TV – relaxed, walking around the house, sitting at my computer; no changes in the temperature of my house / environment, not after eating or drinking anything in particular, not stressed etc. – I’m curious, and struggling to figure it out.
I would really appreciate any advice or suggestions as to what may be causing this – and would be interested to know if anyone has experienced similar?
I came across a video once on youtube of a girl who mentioned she had a similar issue, and didnt know what caused it; I noticed in the comments that Dr. Diana mentioned experiencing something similar to this as well …
So Dr Diana, or any other lovely users of this forum that have experienced similar, keen to hear form you. 🙂January 10, 2015 at 12:01 pm #5211Dr. DianaKeymaster
Boy, can I relate to this! I often flushed in patches, or on one side of my body, too. Do you respond to antihistamines? I think many people are considering mast cells as the culprit, and forgetting the role of other inflammatory cells (not good). My work now is with the underlying causes of mast cell activation (and that of other cells). I hear this from MANY other folks, and I hope others chime in! 🙂January 14, 2015 at 6:28 pm #5218BarbaraParticipant
I know what you mean about the crazy temperature regulation, I spent years doing ‘cardigan on’ and ‘cardigan off’ manoeuvres most of the day. Since my accident, part of my body would go freezing cold, like mid arm, or upper calf, whilst below it and above it were warm, it didn’t make sense. Sometimes my legs were like blocks of ice – like those of a dead person – this coldness also brought with it serious PAIN!
The sweating episodes were mad too, I’d wake up freezing cold, yet wet through with sweat – weird! Or during the day, I’d be normal one minute, then head and neck sweating profusely the next.
Thank goodness I’m much much better now. I’m curious, have you had a spinal injury at all?
(UK)February 5, 2015 at 3:20 am #5282WendyMParticipant
Oh wow! Someone else like me. I’m so excited I don’t know what to write first. I have had this half red, no sweating face for a year now. I noticed your pupils are wide open, even though it seems to be bright in the room. Do you have tonic pupils? I have tonic pupils. They are very slow to react to light changes. I walk in from the bright sunlight into a darker room and all I can see is a greyness. Holmes Adie is what they told me it is. Some of my eye pals have Ross syndrome. They compensate and over sweat on one side of their face because the other non red side is not sweating. But I think I’m having mast cell issues. I have multiple IgE mediated allergies. All cow, soya, grass, trees, latex, drugs. From what I’m reading though it is hard to get a diagnosis of Mast Cell problem here in the UK. This is a link to a picture of my half red face.April 29, 2015 at 12:44 pm #5465spdsk8trgrlParticipant
Hi, I can comment a bit about the mast cell side of things. Flushing tends to result from high levels of prostaglandins, which are released by mast cells. In mast cell activation syndrome (MCAS), mast cells tend to be badly behaved and will release their chemicals to improper triggers. Heat is a common trigger for many. Daily histamine blocking medications can help (like Zyrtec or Allegra here in the US), as can mast cell stabilizers (cromolyn sodium or ketotifen). There are also h2 histamine blockers more commonly known for acid blocking like Zantac or Pepcid that should be tried along with the other histamine blockers. Worth noting that ketotifen is terribly hard to obtain in the US because of its FDA status, it’s legal but not manufactured here. It can be gotten from overseas or compounded, but most doctors here aren’t familiar with it or the process. If you can get it OTC in Australia, I would recommend trying it. Prostaglandins can be tested via a 24 hour urine test for prostaglandin f2a, which I believe is a metabolite. High prostaglandins are commonly treated with aspirin, but be very cautious since those with MCAS are often triggered by NSAIDs (aspirin, ibuprofen, naproxen), and only do with doctor supervision. I’ve seen in our MCAS groups that mangosteen supplements are supposed to help regulate prostaglandins, but I haven’t tried myself. Incidentally, I have high prostaglandins but no flushing. It is also worth becoming familiar with common mast cell triggers and determining if any make your episodes worse so you could avoid the triggers. Reactions to triggers may be subtle; I was having low level reactions for years to ibuprofen showing up as skin eruptions around my mouth, but no doctor could ever figure it out. It wasn’t until ibuprofen also started making me itchy that I figured it out, avoiding has greatly reduced my skin reaction. Another common trigger you should be aware of is alcohol. I finally figured out I was having similar low level chronic reactions to just small amounts of alcohol, beer and wine being worst. I stopped having any about 18 months ago, and when I think it’ll be ok “just this once”, I now pay massively with a quite spectacular reaction. All of the little triggers that you get exposed to regularly can add up to a very mysterious reaction like flushing. Daily meds can help, especially to help you determine if you are looking in the right direction, but it usually comes down to identifying your own personal triggers and avoiding them.
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