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POTS Flare Feeling Really Stuck - Any Advice?


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30 minutes ago, issie said:

Thanks looks very complicated! About the only thing I got from that is nettle tea in the evening is a good idea. I didn't really grasp all the different histamine receptors and what to take to get them in balance

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Yeah, is complicated.   Nettle tea an hour before bed.... good idea, what I do.  Expect a bit of a histamine surge and then it eases off and then sleep.  

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@issie Aren't eggs low histamine? Or are they just common intolerance / allergy food?

I'll cut out tomatoes for a bit. What about sweet potato is that better than potato? I'm not going to change diet much yet, as needs careful thought to avoid malnutrition.

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Sorry for all the questions @issie

What foods do you eat? Are any fruits ok? I'm trying more just to change my evening food.

The list you sent suggests last night's meal might be bad if I am histamine sensitive or MCAS no idea if I am. It had spinach, tomato,egg and peppers in it.......

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With us recently connecting that many of us may have issues with acetaldehyde breakdown and fructose intolerance...... I'm not eating fruit or sugar and mostly grain free too.  

I try to be as organic as I can.  I was a vegan for 3 1/2 years, but had to go back on meat as I got so much weaker.  It did do what we hoped though and reverses chronic kidney disease.   So I'm still careful with my kidneys.  I eat vegetables,  but very few nightshades and very few lectins.  Both give me more pain and are inflammatory.   I eat organic meats and fish if it is flash frozen and handled well.  Histamine is a big issue with fish.  If the fish isn't fresh it will set mast cell off in a hurry.  It starts to degrade the second it dies.  

Thing with mast cell and over response is we never know what may trigger it.  You may have something one time, with no problem and the next time have a huge issue.  It is not a true allergy.  But an over reaction.  The H2 receptors don't seem to kick in and stop the release fast enough and it just goes a bit too wild.  

You will learn what will always trigger you.  And learn what you may can have in small amounts, once in awhile.  And what you dare combine or not.  There is a learning curve and it always needs a bit of tweaking and keen observation.   

Diet is one thing only we ourselves have control over.  It is up to us to make those changes.  No one can do that for us.  And it's the one thing.....really, really hard to do.  

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4 hours ago, Chuske said:

These recent hyper attacks are odd as fairly normal heart rate but feel a bit adrenaline surge like.  Thing is I can't fathom triggers nor relief. Stomach gas does seem to be a factor but wasn't as bad last night but the attack was worse.  Breathing exercises don't help much compared to if I get mental anxiety. So not sure if ANS or heart or stomach or hormones.

@Chuske - what you are experiencing sounds like HPOTS flare to me. The strong but normal heart beat can be caused by narrow pulse pressure, this happens to me with diastolic hypertension (high pressure when heart tries to relax and refills between beats ), it often happens with high adrenaline ( in the Fight-or-Flight response ). The bloating and stomach cramps also can be caused by high adrenaline, since the blood from the digestive tract gets transported to brain, heart and lungs during Fight-or-Flight. So does the anxiety come with high adrenaline ( I describe it more as an internal restlessness that causes anxiety ). Sleep disturbances are common with high adrenaline levels. 

If you get diagnosed with HPOTS ( or at least with adrenaline surges ) vasodilators like calcium channel blockers can help. I believe MCAS causes more vasodilation since histamine is a vasodilator and antihistamines are vasoconstrictors ( someone please correct me if I'm wrong ). If your symptoms are caused by HPOTS then counteracting vasoconstriction can help (for me vasodilator meds and IV fluids, which are also vasodilating in action, were essential in improving the flares ). 

https://www.dinet.org/info/pots/hyperadrenergic-pots-hyperpots-an-overview-of-a-pots-subtype-r220/

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The one thing I don't ever really have is high blood pressure. 120/80 is generally highest I see outside of medical environment (white coat syndrome 😉).   105/70 is typical.

That might class me as less hyper pots but agree the rest fits

As for pulse pressure during the attack my BP was 119/73 so prob wider than normal

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@Pistol I vasodilate too.  One cool thing that Tramadol does is has a bit of a calcium channel blocking affect.  As does GastroCrom, which is a mast cell stabilizer.  A regular calcium channel blocker was wayyyyyy too much for me.  I'm super sensitive and have to go extremely low on everything.  But as mentioned,  sometimes what we think of to be most uncomfortable "symptoms", may in fact be the lessor of the two evils.  It may be the body trying to right something that is worse and is a compensation.   Stopping a compensation may NOT be the right or wisest choice.  But modifying and not completely stopping may take the edge off until you can get to the "core" problem and try to "fix" it......then, no more problem.  

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Got blood and urine test results back. Everything normal except lymphocytes slightly low.  Not sure if that means much though, only spoke to secretary, so will have to wait for doctor to look at it and decide if needs repeating or further tests or ok to leave it.

So looking like it's just the usual ANS dysfunction that has flared my ME and POTS.

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