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Is this flushing? (Read 9465 times)
Tristessa
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Is this flushing?
07/31/12 at 15:08:14
 
This will be my first post here.  I have been having these episodes where I will just get soooo hot and break out into a sweat.  This can happen while sitting inside in the A/C.  Is this consistent with the flushing I have been reading about that is mast cell related?  I haven't yet seen my skin turn red while this is happening.


I don't want to write a book here but I have mitral valve prolapse and POTS (hyper?).  I have been increasingly reacting to more and more foods, smells & chemicals over the past few years with the past few months being unbelievable!
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PJP123
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Re: Is this flushing?
Reply #1 - 07/31/12 at 16:28:17
 
That's how flushing is for me.  I have autoimmune chronic urticaria which is  a mast cell activation disorder and mitral valve prolapse.  I've yet to be diagnosed for POTS but am sure I have this too.

I always was itchy in the summer from the sun and lotions and heat.  My symptoms kept building to the point where I was convinced the shower and shampoo was making me short of breath.  Every doctor dismissed my claims but when I found this forum I knew that everything that was going on was all  related to 1 disease (plus POTS) and not just that I had allergies and reflux and feeling like I want to pass out, and tiny red dots on my legs.  

You need to be seen by a specialist and there are few of them around.

Dr. Castells is at Brigham and Young Hospital in Boston, MA.

Watch what you eat.  This is the biggest part of the problem.  But you really end up with hardly anything to eat.  It's a long haul to figure out what makes you sick.  The doctors are useless with this.  Keep reading everything written on this forum to educate yourself and then educate your local doctor (most don't want to hear about it, they say it's extremely rare).  Well I now of 700+ people with it right here.  LOL
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Anaphylaxing
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Re: Is this flushing?
Reply #2 - 07/31/12 at 19:39:36
 
I agree it can be like that for me. When it's bad my face usually turns red over the bridge of my nose. creepy.

I need to be SO cautious with heat now. Avoiding it, staying in A/C, or carrying ice packs, staying in the shade. And like PJP said staying away from chemical creams etc. And trying to sort out other triggers if you can. I'm still working on this and definitely do not have it cased.

I have POTS and ? MCAS and my mother had a mitral valve replacement which we always presumed was post infectious mitral stenosis but my curiosity tends to suspect otherwise. . .
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Tristessa
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Re: Is this flushing?
Reply #3 - 08/01/12 at 00:43:52
 
Thank you both for replying.

You know, I have only known about mast cell issues for a couple of moths now but have been dealing with figuring out my food triggers for a few years now.  I am already at the point of a short list of safe foods.  Let me ask you, do you get behavioral type reactions from your triggers?  Do you find yourself in a rage over small things?  Do you get the feeling of being on edge from triggers?  I get those feelings, as well as, gastro symptoms, increased POTS, fatigue, severe brain fog  Shocked and more that I can't recall right now.  I also smell phantom smells of smoke - no one else can smell.  
I ha an episode yesterday several hours after a blood draw that was either triggered by the blood volume change, food or something in our house.  
It hit me first with extreme fatigue.  I just needed to lay down.  Then a huge wave of nausea and dizziness struck.  That went on for a while and then quickly turned into a feeling of passing out despite laying down with my feet up.  I know this feeling quite well as I have experienced it many, many times over the years.  Only this time was seemingly out of nowhere and sudden while lying down.  My blood pressure and Heartrate first spiked and my heart stayed in tachycardia while my blood pressure plummeted down as low as 70s/40s.  I got the flushing and sweaty feeling and then the extreme cold, shivering as I started to stabilize my bp & Heartrate.  Then it was time to 'crash' for about an hour.  I was able to speak throughout this to tell my husband what to do to help me but my voice was difficult to use if that makes sense.   I started sipping water, eating salty chips and apple slices.  My equivalent of fluids that was quickly available.  Over the years I have always thought these things were hypoglycemia related but yesterday I had eaten quite a large meal and drank some sweat tea after my fasting for my blood draw.  Could this have been a delayed reaction to the tea (caffeine or sugar)?  Or could the large meal after 14 hours approx of fasting have set this off?  Does anyone have any input??  This stuff is making me  Cheesy.
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mommy2seanp
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Re: Is this flushing?
Reply #4 - 08/01/12 at 01:32:06
 
Tristessa,

Firstly, I'm sorry you're experiencing this.  

Triggers are very individual and as you'll find out it might not have been one thing but a combination of things.  Think of the full bucket theory and perhaps just one of those things tipped it for you the other day.  

My biggest concern is that it sounds like you might have been having anaphylactic shock not just POTS symptoms.  I'm not a doctor here but many of those symptoms especially the bp drop, shivering, and being ice cold are HUGE triggers for me when I shock.  I also have POTS and MCAS (anaphylaxis) and there is definitely a difference between the two.  Also, not being able to speak well could have been from throat swelling, low oxygen, etc.  Do you have epi pens? Take antihistamines?  

How are you doing today?
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Tristessa
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Re: Is this flushing?
Reply #5 - 08/01/12 at 05:41:14
 
I am feeling okay today.  Just a little tired.  I haven't tried a good round of antihistamines yet because the generic Zyrtec I took (1 dose) gave me weird feelings including tingling lips.  I don't have epi-pens but my children do because of severe food allergies.  I really think this was a shock reaction too but wasn't sure if anyone else would agree.  It can be quite crazy when you feel like no one else understands what you are going through.  Sad
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mommy2seanp
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Re: Is this flushing?
Reply #6 - 08/01/12 at 08:14:43
 
For what it's worth 2 children's epi pens = 1 adult epi pen.  I had to use two of my son's epi pens for my first anaphylaxis.  My son also has severe food allergies which we now know is actually Mast Cell Activation Syndrome.  

What about Benadryl?  Many have issues with the red dye (like myself) but I'm able to tolerate the dye free liquid gels.  If all else fails you can get your meds compounded to rule out if you're reacting to the active or inactive ingredient.  There are many H1 blockers out there so what works for one might not work for another.  

In the meantime would your kids' allergist or PCP prescribe an adult epi for you?  Take it easy.  My first anaphylaxis quickly lead to another and then another totaling 3 in a two week period.  Your body is hypersensitive right now.  I tend to drink lots of water too.

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Tristessa
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Re: Is this flushing?
Reply #7 - 08/01/12 at 10:39:41
 
Thank you!  I think I might give the dye free Benedryl liquid gels a shot.  What is the typical dose?  If I remember right, most people are doubling up right?  I have this terrible headache that I suspect might be a histamine headache.  It hasn't gotten any better all day.   Cry
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PJP123
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Re: Is this flushing?
Reply #8 - 08/01/12 at 14:27:11
 
Get a prescription for Singulair I felt a big improvement in 2 days.  I wish I could take it 2x a day but insurance only covers 1x.  

Your severe reaction very well could have been your body crashing after fasting and then eating.  It's never easy to figure out.  Hope you feel better soon.
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Re: Is this flushing?
Reply #9 - 08/01/12 at 14:30:55
 
When I'm reacting my emotions go nutso for sure. My body will not let me feel happy until I've rid my environment or system of the trigger. I often start crying totally involuntarily. It bothers my because people just take it as anxiety or panic but it's involuntary.

My nose is like a dog now, I can smell everything on everyone and any change in the air. You  might actually be smelling something that your body is warning you might be a trigger.

Having an antihistamine you can tolerate is key until you can see a mast cell doc.

Hang in there.
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PamH
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Re: Is this flushing?
Reply #10 - 08/02/12 at 10:41:50
 
Tristessa,
Sounds to me like anaphilaxis.  I am a shocker and have had this happen to me numerous times. I agree with mommytosean, you need epi pens!  I wanted to tell you that I started out with big issues because I am salicylate sensitive-along with a lot of others on this site.  I am always harping about them...but they are in so many foods and products we use everyday.  They cause your mast cells to degranulate and that can lead to anaphilaxis.  I'm telling you because I read that you drank tea...that is high in salicylates I am not sure what you ate-but everything adds to your "Bucket" and when its full you trigger.  
I would look into salicylates they fill that bucket pretty fast when you are sensitive.  
I was reacting to my toothpaste and fabic softener everyday...I just didn't know it!
The salicylatesensitivity.com site has a comprehensive list:

Good luck,
Pam Smiley
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Pam
 
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