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issie

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  1. This was an old post and I had forgotten about it. We did find I had too thick blood. Had issues with Factor 8 and Collagen Binding and a one time positive on APS (so that is a question still). Instead of a blood thinner, I use enzymes to keep my blood thinner. I couldn't do the aspirin due to MCAS (mast cell activation syndrome). But part of my problem was this and I also have to vasodilate my veins slightly and not constrict them. With my subtype of HyperPOTS, this is a different way of dealing with my POTS than the traditional way of doing things with those with lower BP. Mine tends to be higher. Mild calcium channel blocking "type" medicine also helps with dilation of my veins and has been a big help when my alternative things don't work as well. We all have very individual journeys. What works for one won't work for another.
  2. Good advice. And what may work for one, may not work for another. We need to know what the properties are and what they are for. And then pay really close attention to what your body tells you with something.
  3. I have liquid and put a dropper full in water and drink. See what your bottle suggest. I'm like you....don't want to be on something all the time. Or have long lasting side affects.
  4. I take it when I have that really bad hyper feeling. I don't take them together, usually. But have. The lemon balm seems to help sleep. And black strap molasses seems to help too.
  5. Note the comments. As we are receiving more feedback, we are adding additional information. https://www.healthrising.org/blog/2020/06/05/fight-flight-neuroinflammation-fibromyalgia-chronic-fatigue-syndrome/
  6. @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.
  7. @ChuskeDejurgen just added a comment on the blog about dopamine and fructose you may find interesting. You asked about fruit.
  8. 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.
  9. Some sites will tell you they are and others say the white interfere with what breaks down histamine. For me, eggs trigger me. https://www.medicalnewstoday.com/articles/322543#diet Some do okay on sweet potatoes.
  10. 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.
  11. Also ginger is a warming herb and can increase internal heat. And also is a stimulant. https://www.verywellfit.com/ginger-tea-recipe-88180 Although ginger is said to aid digestion, drinking too much of the tea can trigger an upset stomach and loose stools in some people. Avoid drinking ginger tea before bed or at night if you have insomnia or find that it keeps you up.
  12. MAST CELL threads https://www.healthrising.org/forums/threads/mast-cell-histamine-immunotherapy-with-histamine.6233/ https://www.healthrising.org/forums/threads/potential-linking-fm-mast-cells-sleep-deprivation-food-intolerance-exercise-intolerance-and-me.6217/
  13. Eggs are a high histamine trigger. And apples for dejurgen and I, will trigger both of us. It's the fructose. Chamomile will trigger some, in the ragweed family. Tomatoes are absolute worst. Potatoes make me hurt terribly. So possibly! The testing for mast cell is hard to get correctly. It has to be done within a couple of hours of a flare and when in one, we don't feel like getting to a lab to have them. Many docs now are treating symptoms. And with POTS, it's more common than people realize. They will think they are HyperPOTS and its mast cell related. Try to read the thread on Healthrising and links on MCAS. I'll try to get that link for you.
  14. I'm still thinking mast cell surges. You can't sleep with those and they feel like what you describe. Including the hot flashes. What did you eat or drink? Something that could cause a histamine spike? Even some medicines can do it. They do cause that adrenal feeling and anxiety.
  15. The only thing I found that worked for me, medicine wise, was Tramadol. Very low dose and cycle on and off as to not get addicted or it stop working. I found it worked better with a Bentyl, which was a muscle relaxer and very mild. Tramadol is considered a narcotic in the States. But 1/4 to 1/2 of a 50 mg. Was enough to take the edge off. It works on all the neurotransmitters including glutamate which is the excitatory part and connected to the sympathetic nervous system. It also works on the opiate receptors which seem to be a better receptor (with me) to tweak when it comes to flight or fight. Also, Motherswort helps and lemon balm. And black strap molasses. Sorry you are having such a time. It is so miserable, and not getting sleep makes it so much worse. It sounds you are not only having POTS, but are back in a ME/CFS crash too. I have that happen a good bit too. We over do it and then have PEM and it throws us down again. Hang in There!
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