chueh, websearch for--> MCAS cold sensitivity
Also learn about how the hypothalamus regulates temperature, and it contains H4 receptors which respond to histamine. So maybe that explains your symptom.
Usually though, people with excess histamine hate the heat and like the cold, if I remember correctly. You are opposite. Histamine dilates blood vessels, but maybe the vessels in your skin are instead constricted and so you are feeling cold in normal temperatures.
If I go out for a walk in very cold weather, after 5 minutes or so of vigorous walking my hands suddenly feel warm from vasodilation.
People with mast cell disorders don't all feel the same symptoms. So it's termed a heterogenous disorder. If you were to watch videos made by mast cell patients, they will not all be exactly the same.
It's also one of those disorders that is said to "be encountered by many doctors, but recognized by few".
chueh, you have intelligently anticipated our next step: I figured you would have other 'oddities' to add into the mix. I further reasoned there would be inflammatory things, which is why I'd introduced that term. E.g., swelling is inflammation, caused by immune system cells called Mast Cells.
"Lips suddenly swollen with blisters when i was 20-40(i have pretty much been aware of what I eat and remember what I ate). I practice good hygiene, so I never touch my mouth with hands unless just washed."
Bingo. Not only swelling but the more severe type with blisters. Remind me to discuss the possible trigger in the near future.
"hive outbreak with no know reasons. The last severe one I got happened so very suddenly. I got super itching skin from the head to the toes, rash everywhere. "
Bingo again. The outbreak could have been from an allergy, or... more likely from your Mast Cells running amok on their own. An immune system dysfunction.
I was going to ask if you ever had flushing or something similar out of nowhere. Now we very rightly look at MCAS. Mast Cell Activation Syndrome. Mast Cells release many powerful biochemicals,. That includes histamine which caused massive vasodilation - which in turn caused your blood pressure to drop. Imagine water running through a backyard hose, if we expand/dilate the hose from 1" to 2" then the pressure inside drops.
"Heart beats were racing."
To compensate for less pressure, the heart beats faster to try to keep enough blood to the brain.
"Emergency doc gave me a shot"
Likely adrenalin, to oppose the vasodilation caused by the histamine.
"and i passed out right away"
because the adrenalin was not quite quick enough. You could have died from 'shock' if you were alone.
" No bites, no food allergy, never know WHY. "
That can happen spontaneously. That's even more true with the more severe MC disorder called mastocytosis. This is now the main focus of our investigation. Absolutely.
And certainly be wary of bee stings and resulting anaphylaxis.
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Got to rush off for now. Some odds and ends:
"I don't have to use the blood pressure machine to know how it is"
I meant comparing ankle pressure to arm/brachial pressure. But that's not important anymore.
"...lower than MY normal readings"
Always be wary of passing out and banging your head, which can be very serious. Sit down or better yet lay down if imminent. Yes, you know that but this is just a reminder.
"I cannot soak myself in warm/hot water, for I felt like I was out of breath. For some reason, I had a hard time relaxing in bath, feeling lack of oxygen and fatiguing "
Vasodilation bodywide from the heat. Then there's not enough blood to go around, that's hypotensive 'shock'. Yes, be very careful of that. As the network of blood vessels get internally bigger (the volume inside the vessels), there is not enough blood to go around and therefor less pressure.
More tomorrow...
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Your easy bruising as in the title of this post can happen because Mast Cells also release heparin, a powerful blood thinner.
"Did any doctor use a blood pressure cuff on your ankles?"
To rule out some obstruction of blood flow to the legs. The "ankle-brachial index".
"I forgot to add that I suspected i had vessel problem, not only due to heavy legs, but also I get bruises quite easily."
Overall, something wrong with the vessels is my top speculation for now. Maybe some 'connective tissue disorder' resulted in malfunctioning one-way valves in the veins. And varicose veins. Also easy bruising because vessel walls are weak.
Yes, easy bruising is a top clue.
"My mom has low counts on her platelets."
That's a separate cause, as is low clotting proteins made in the liver.
This could be out there but there is a disorder that does cause this. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6774649/ Here is another article. https://www.aad.org/dw/dw-insights-and-inquiries/archive/2021/achenbach-syndrome See what you think. Might be worth mentioning to your doctor.
I think it's Achenbach Syndrome. I have had this several times over the years. It is self-resolving and much testing had come up with neither mortality nor morbidity. It's rare but pretty harmless.
"Everything else seems to be directly derived from MC problem"
Probably, yes.
But there are other major ones like prostaglandins and leukotrienes which we might get to eventually.
I guarantee you, the complexity of the immune system is endless :) But I am trying not to introduce too much too soon.
When you feel as if your head might explode from too much, then you are doing this right :)
In two weeks or so, you might think, "Now I really understand it". Then in 4 months you will think, "Now I really really understand it". And so on.
If your half-sister is somewhat similar, you can of course end up helping her. If she lets you.
"going about to try reduce my problems..."
Here is what a highly paid Mast Cell specialist like Afrin would do for starters:
- H1 blocker, diphenhydramine/Benadryl
- H2 blocker (which are sold as antacids, try between Tagamet Pepcid Zantac, one might work better than another)
- mast cell stabilizer (but we want OTC, not Rx, so quercetin or fisetin or luteolin
- take for for six weeks, then you'd go back to that doc for followup)
- also monitor if any foods make you bad, look up their histamine content. Or find and follow an anti-histamine diet.
- try diphenhydramine as a sleep aid, double dose. But if daytime use makes you groggy, use a non-sedating H1 blocker instead during the day
I personally would say: be ultra self-observant, and try various things. By all means keep absorbing as much knowledge as you can, until you can customize your approach to yourself. This is your life's work now. Every success you have will spur you on to progress more and more healthwise.
"As my husband usually says that my body works differently than others."
Yes, he is very correct; so hopefully you take him with you on all medical appointments, and he should take notes (especially writing down any technical terms to look up later).
"when we hike/bike more miles than usual, my husband gets up the next morning much later with slonger sleep, while I am not."
There's a name for that: unrefreshing sleep
"My sleep problem is the worst in summer."
That's a clue, to something. Try to figure out why. Humidity? Pollen? Mast cells have heat receptors, btw.
"drugs similar to the shot the ER doc gave me for my severe hives, they all work either strangely for me or non effective"
That's called: paradoxical effect
Your docs have mostly been applying Band-aids instead of trying to correct the underlying cause.
homeopathy is useless, except possibly for inducing a placebo effect (which itself is not useless). I'm talking about the ultra dilution type, which supposedly changes the left behind water molecules.
Okay, back to work.
"no urticaria pigmentosa at all.
no spontaneous flushing either."
Then you are probably not mastocytosis.
' "I'm not sure what you meant by drawing "pronounced line" '
Find some photos of dermographia. The small pressure on the MCs can cause them to release histamine and so there can be a red line, in some people.
MCs don't circulate in the blood, they line all the places that are world-facing: skin, lungs and GI tract. They are on sentry duty, for invaders. But they don't destroy invaders, they instead orchestrate other immune cells to destroy the invaders. Or unfortunately they sometimes orchestrate attacks against the innocent human who houses them :) Like hired mercenaries running amok.
MCs have over 100 "receptors" (sort of like sensors) and over 200 "mediators" (powerful biochemicals that they secrete). So they can do many things, and account for many symptoms.
"I have them all as the 6 items you listed here."
Wow.
"I don't feel belonging to any group or race."
Me, neither. That's called being a Sigma. Independent minded.
"but thank you for bringing this up to make me laugh,"
Okay, since you say so... try Korean Sigma Girl Cherri, Short videos.
Perfectionist Sigma
https://www.youtube.com/shorts/FMt3P7IoWa8
Tough and Undeterrable Sigma
https://www.youtube.com/shorts/or2hl8kOpxs
Surprise Sigma
https://www.youtube.com/shorts/C-G_pHgQE3g
Simple, imperfect definitions:
- allergy is when the body attacks harmless things (pollen, food, dust) as if they were threats. Allergy involves Mast Cells.
- MCAS is when the MCs go off too easily, too powerfully and/or too often. It's like in a Western movie when the bottle of nitroglycerin gets hot in the sun and therefor might go off just from shaking it.
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- anaphylaxis is a severe MC reaction. If you ever start to get swollen lips or tongue get somebody to drive you to an ER quick and then debate about it later, else the throat might close next.
- anaphylactic shock is possibly fatal, when blood pressure drops so very low and organs and brain don't get circulation.
But ^^^^^^^^^^ it's NOT likely you will get those two, just be aware.
It sounds like you've had a very hard time for a lot of years, so I'll go the extra mile to try to help. I also recognize that you are willing to put in the mental effort, which makes things go well.
"The doc totally ignored the last 2 concerns but only told me to get a MRI for my lumbar."
Right, standard medicine is good at what it's good at, but not good at these immune mysteries.
"UNPREDICTIBLE outbreaks"
If you get episodes without any identifiable trigger, seemingly random, we need to consider mastocytosis (cytosis = increase in cell number) - the worse condition than MCAS. Hopefully, we can rule it out. I think we will.
-Find pictures of urticaria pigmentosa (brown spots aka pigment) and see if you match. (I think you would have mentioned that.)
-You don't have spontaneous flushing, right?
-Can you draw pronounced lines on your sternum with a fingernail? Find pictures of dermographia.
"Ken, you are so good. Thank you for being so thorough."
And thanks to you for replying thoroughly. Would you believe, many people won't reply at all?
"If one of my doctors is like you, I would be so happy!!!!!!"
Next visit, you can surprise them with your acquired knowledge :) Some docs like that, but some resent it.
"But i;m not crazy though..."
It's not unusual for people with mystery conditions to get wrongly sent to a shrink.
You will have noticed that I give you signposts on things to look up and understand, like Tilt Table Test. Everything I've been saying is deliberate. I think you are very diligent and you will reread everything.
So here is one more term: systemic vasculitis. It's one possibility, but not the only one, for your underlying cause. Roughly, it means when blood vessels are inflamed and they don't behave correctly.
Btw, have you had the ANA blood test?
"To tell you the truth, I've learned much more here about my issues than going to the doctors."
Good! :) Now you must be obsessive in correlating and ruminating over everything. That was my goal.
"They always only respond ONE condition."
Yes, that is the problem with specialists. You are insightful.
"For example, when I described my legs being weak, fatiguging, heavy, swollen, varicose appearance, he had me to do the ultra sound. And then he reported that nothing was abnormal. That's all!"
Probably only checking for Deep Vein Thrombosis.
"None of any doctors have tried to QUESTION why i would feel certain ways........ They only go about the numbers."
Insightful again!! :) But what we are after is the **why**. This is called the Functional Medicine approach - which is the way to go after going-by-the-numbers gets nowhere.
Accordingly, now answer this: what happened/changed when you were 45?
"No known allergy."
I think you maybe have mouth allergy. That accounts for the immediate reaction. (I like these mystery cases, so I read some of your other posts.)
Otherwise, Oral Lichen Planus was suggested to you on your mouth post; maybe that autoimmune condition sensitizes your mouth, and the immediate reaction your get is from acid, alcohol mouthwash. etc.
"I'm not acquainted with the effects of excess histamine."
Well, I think you should be. Did you know that the sleep aid Sominex is the same antihistamine med as Benadryl? Histamine has many effects, including being an alertness chemical.
"Yes, I got POTS, ONLY when I am not doing anything special but after bending my knees to take out things from cabinets. If I am doing aerobic with sudden ups and downs, I never have any POTS."
Leg muscles being contracted makes blood flow upwards against gravity in the veins. Otherwise, the blood would just stay down there. Also in a Tilt Table Test, the patient often faints because they are upright posturally, but secured/belted on the table and so leg muscles are not contracted. I am suggesting to you mechanisms which might explain your various symptoms - which you can mull over.
"...strange condition after age of 45"
What happened then? Any immense stress or virus or chemical exposure? Menopause?
"After I bike, then my legs feel normal "
Maybe because you forced blood flow. Did any doctor use a blood pressure cuff on your ankles? They should have.
Or maybe lymph flow. Have you heard of lymphatic drainage massage? Look on youtube.
"I have cramps quite often on shin, calves, and top of feet"
If that's not from low Mg or K, then maybe it's from buildup of exercise metabolites (e.g., lactic acid) along with insufficient blood flow to flush them out. How does that sound to you?
Ever tried PostWorkOut hot bath to stimulate flow? Or PWO ice bath to inhibit inflammation?
"You spoke about the weak pulse on wrist"
Only on one wrist if there's a blockage on that side. But if they are equal, we rule out thoracic outlet syndrome, but must still wonder why you get the bruising/pain on only one side. E.g., even a dog leash, or opening a jar, can be sufficient if you are vulnerable somehow.
"It got me thinking that I have Hypotention with low pulse: usually 80/50 with heart beats of 56."
That could be normal for you if you are very small. Or, it could mean you have chronic vasodilation from some inflammatory cause. Allergies? Are you well acquainted with the effects of excess histamine?
Dehydration? Ever get dizzy upon standing? POTS (positional orthostatic tachycardia)?
"continuously working out... all day long outdoor activity, hiking/biking"
It's not unusual for fit, healthy women to develop immune system dysfunction. Also, autoimmunity is generally most common in women of childbearing age. Any family history?
"always had very swollen lower legs during flying"
Have you heard of blood pooling in lower legs? POTS and EDS? Are your joints or skin hyper mobile? Joint laxity/weakness or pain?
"I have visible varicose peearance"
Any reason to suspect you have fragile/weak blood vessels? This gets back to the finger problem.
Deficiency of magnesium and or vitamin C? Any extreme nutritional approach like carnivore or vegan?
Bleeding gums? There is a modern resurgence of scurvy.
Looking at chueh's history of posts, her series of unusual conditions are very possibly related to this finger problem.
Occam's Razor: first look for one underlying cause to everything.
Find 2-3 web pages that list the traits. Here is a list I dug up:
High energy and creativity
Sensitivity and empathy
Strong emotions and reactions
Tendency towards perfectionism
Impulsive behavior
Artistic and musical talents
I would add that I have seen lots of people with any kind of overactive immune systems and many/most are worriers and analyzers. That's not a criticism. I personally think that being high intensity is a good thing.