issie
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Posts posted by issie
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1 hour ago, Pistol said:
I would like to add that it is very important to check with your doctor or pharmacist before introducing any herbs or supplements IF YOU ARE ON MEDICATIONS FOR DYSAUTONOMIA. Many supplements are known to interact with certain medications - which is especially important to us, since we are often highly medication sensitive. I get some herbal supplemets from my chiropractor and she has the supplement company she works for research if the particular supplement can be taken with my medications and - more importantly - with dysautonomia in general. Some supplements I cannot take. And once a supplement is recommended by them I check with my pharmacist, who reviews all of my meds and lets me know if there are any potential interactions. For example I cannot take Hawthorne and Black Kohosh due to my diagnosis of HPOTS and interactions with my medicines.
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.
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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.
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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.
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Note the comments. As we are receiving more feedback, we are adding additional information.
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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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@ChuskeDejurgen just added a comment on the blog about dopamine and fructose you may find interesting. You asked about fruit.
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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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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.
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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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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.
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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.
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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.
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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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@Pistol I too have a lot of pain. Part is due to FMS and EDS. But still not all can be explained by those two labels.
Dejurgen and I have more to share and will be slowly sharing on the blogs. We hope to get it all in one place soon. There is more you can do! And less destructive too.
You may look up both of our comments, as we are already sharing some in other threads, on the forum part of Healthrising.
We will share there, as we are not monitored and can put our thoughts freely there and our hypothesis.
Issie
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@Chuske I'm glad you enjoyed it. We are adding more on another blog topic of recent. Here is the link
We are starting to find many connections and "purple bandaids".
Hang IN There!
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Every day brings its own adventures. It's up and down. Better days and not so good days. Pay attention, see what your body is trying to tell you. Notice what seems to help and what doesn't. And the gut plays a huge part. Notice foods and see if that plays into the picture. A good part of the immune system is in the gut. Be thankful for those better days!!!!!
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Dejurgen added more to his comments this morning on that link.
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I have higher blood pressure with my HyperPOTS, not easy to faint, but have. (Can get seated first, have enough warning.) Have really high NE with standing and the fast tachycardia heart rates. And have neuropathy pretty bad.
Oh, one of my sisters sons also has Sojourns and my mom did too. My dad also got Gillian Barre from a vaccine. (Consider that with vaccines. Though usually gotten from a flu or pneumonia shot. They told my sister we should not have them as it could give it to us too. And I have Hypogammaglobulinemia and should be on IVIG. But decided against it.)
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Dysautonomia is in my family too. My sister has OI and vagal nerve related syncope. Her sons have POTS, one with MCAS and his twin has POTS. Her daughter POTS and EDS. My maternal grandmother had POTS and EDS. My mom had severe MCAS. So there are genetic components. My sister and I was in a family study for CFS in Utah with famous ME/CFS doctors. They found a lot of our genetic mutations. But, my mitrochondria complex, all 5 of them, were not working properly. Usually with only one Complex off, a person is in a wheelchair. I still function. I have symptoms similar to your sister. And that can be mitrochondria related. My sister is more Functional physically than me, but has more fatigue. Which doesn't really make sense with my mitrochondria being so wonky. But I'm more strong willed and push through a lot.
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@Pistol, it actually could be for your sister. Like POTS, ME/CFS can present different for different people.
You may enjoy the latest post on Healthrising as Dejurgen is starting to slowly unfold some of what we have been researching and experimenting with. I listed the link.
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https://www.healthrising.org/blog/2020/05/27/neuroinflammatory-paradigm-chronic-fatigue-me-cfs/
Dejurgen, who I research with, is starting to unfold some of our ideas. They are in this blog under comments. You guys may find it interesting.
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59 minutes ago, Chuske said:
@issieYes I have ME and POTS I had ME first and almost totally recovered from it in 2006 but then started getting POTS as well in 2010. That is the tricky bit my energy prob tanks more than someone with only POTS.
Psychology side is actually important for my ME side of things but I use better things than CBT which I never saw any benefit from. Find any kind of stress really tanks my energy. Nutrition, exercise,pacing, sleep etc all important too.
At my best in 2012 I was able to travel and walk long distances but since 2014 POTS has been worse and in turn affects the ME. I was ill but functional until 5 weeks ago when it all relapsed badly.
Sadly with both of these things we have relapses. Emotional upsets, getting over tired, too hot, diet mess ups.....all can contribute. I wish we knew exactly why we are all so sensitive. But fact is, we are! (There has been reference to us as being the canaries in humanity. We sense and sound the alerts, very fast.) Pacing and paying attention to your body is very important when we are talking about ME. Trying to not get over stimulated by things. Even sounds play a part.
HANG IN THERE!
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45 minutes ago, Chuske said:
@issieYes I have ME and POTS I had ME first and almost totally recovered from it in 2006 but then started getting POTS as well in 2010. That is the tricky bit my energy prob tanks more than someone with only POTS.
Psychology side is actually important for my ME side of things but I use better things than CBT which I never saw any benefit from. Find any kind of stress really tanks my energy. Nutrition, exercise,pacing, sleep etc all important too.
At my best in 2012 I was able to travel and walk long distances but since 2014 POTS has been worse and in turn affects the ME. I was ill but functional until 5 weeks ago when it all relapsed badly.
You might check out Healthrising forum for ME. That friend of mine and I research together and have lots of hypothesis as to issues possibly causing all this. We can put our ideas out on that forum and it isn't moderated. His name is Dejurgen. You can look either of us up and read what we think and are finding. He puts the technical information out. I have a good bit on POTS too. And it is all connected.
Blood Letting - Blood Draw
in Dysautonomia Discussion
Posted
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.