issie

Consider a possibility of also having ME/CFS. A research friend of mine presented as you are and it is ME which is a worse form of CFS, some interchange what they call it. There are doctors in the UK that recognize it. But CBT is NOT the thing to do for it. (Despite their claims.) I also have ME and that is an additional DX to POTS. My presentation is not as bad as my friend.

Mine had to do with Factor 8 and Collagen Binding. Found when they found out I have the worst genetics for CIRS too. Has to do with clotting factors. We are thinning my blood with Serrapeptase, Lumberkinase and ginger. Also Ginko helps reperfusion issues and thins blood too. And I do have to vasodilate.

Try to evaluate WHY, when you have symptoms. What is your body doing and is it trying to compensate for something. Many times, we think a "symptom", as being "the" issue. When in fact it is the body trying to "right" a worse problem. Suppressing a "compensation " and not getting to the "core" problem.....may NOT be the best solution. I think many masking medicine used are not the "best" solution. It doesn't get to the "core" problem. And my being HyperPOTS too, I know how uncomfortable the over response of high norepinephrine is. But it is trying to help me get blood to my heart and head by increasing my heart rate to do that. Getting leg muscles to help the heart do that, can assist to calm the response down. I like one of those bouncy balls and use it as my leg rest. I fidget my legs on it and gently bounce them on it. It helps with things and to keep things moving. Having laid still for so long, movement may help as it could be a need of that. I also find that thinning my blood some with herbs is helpful with blood flow. (They did find a genetic link of too thick blood with me. And that is being found more often now too.)

Motherwort or Black Strap Molasses calms my POTS surges and helps me. Also, lemon balm is calming. Of recent, I'm finding nettle tea about an hour before bed, gives a slight histamine response and then has a really nice calming affect and I sleep much better.

I started my search for answers and managed to get to Mayo in Arizona. This was before they knew very much about POTS, EDS, MCAS connections, or very much about POTS or MCAS overall. Mayo really tries to find out your issues. (But it takes really good insurance as it is very expensive.) You go from one doctor to the next and one test to the next. I had 3 visits there. The first was 3 weeks for 5 days - 8 hours spaced through the day, second was 2 weeks with same time frame, and 3rd was 2 weeks same time. I probably have had the absolute best evaluation possible. I've also been in many research studies with other testing and have gotten more of my WHYs answered. And I'm an autodidact researcher myself. So there is still a lot to be learned. Don't give up searching for your WHYs. There are answers and "purple bandaids" to be had.

I just added more information on Healthrising thread on MCAS and some other helps for it and some of the other connections some of us are making, for those interested.

https://www.naturalmentalhealth.com/blog/taurine-supplements-anxiety Taurine is an amino acid that increases glycine and GABA to calm the brain (AKA ease anxiety).15 It also protects the brain by reducing the harmful effects of excess glutamate.16 I consider taurine when I see someone with mood instability along with anxiety, but it may also be helpful for anxiety alone.

Not bad, if you tolerate it well. It is calming your hyper response down by upping GABA which is a calming thing. You have one of your "purple bandaids". Keep searching, there are more.

I have some methylation issues and taurine for me wasnt something I could do. Taurine helps to calm the sympathetic system as it goes down the GABA pathway. There is also a strong connection with sympathetic response due to glutamate and calcium signaling, plays a part here. If you go back some years ago on this site, I kept a hypothesis of glutamate being a strong issue with us POTS people. And calcium channel dysfunction as a possible issue. That is now all coming to light with science, finally. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994404/ Thus, taurine-fed mice have a functional alteration in the GABAergic system. These include: increased GAD expression, increased GABA levels, and changes in subunit composition of the GABAA receptors. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994392/ We find that taurine effectively reduces glutamate-induced Ca2+ influx via ionotropic glutamate receptors and voltage-dependent Ca2+ channels in the neurons,

Depends on if you need to vasoconstrict or vasodilate on the mestinon. Some find benefit if there is a need to vasoconstrict. I personally need to vasodilate. And that for me was a disaster. Each person is different. I haven't tried the other medicine, can't comment on it. I personally dont try to take down, my at times, higher blood pressure. I'm HyperPOTS for sure. I have variable swings in my blood pressure and can go from somewhat high to drops with the orthostatic part of this illness. But I don't treat that as I feel that too is a compensation. I do however feel the doc you spoke of has some very good insights into many different things. It is hard to find a doc who has insight into all the complexity this can involve. So much ties into it. I haven't spoken to him personally, but have followed him, for awhile now, on media.

When your blood pressure drops, your body is trying to bring it back up with a higher, faster heart beat. That is your body trying to "right" itself. It is a compensation. Many times people "wrongly" feel that symptoms are illness......when in effect it is your body trying to correct a worse problem. Suppressing compensation will go very wrong. As your body has a built in intelligence to try to repair itself. Just figuring out where the core" issue is, instead of masking "symptoms", is a better approach.

You need sleep to recover and calm the autonomic system down. That's for sure. But there can be a bit of a worse surge of histamine response when coming off. I thought I'd never get off them. But just an H1 is less dangerous than using an H2 or H3 which both those receptors help moderate the histamine that the H1R releases. Histamine is needed to activate those two receptors. I did find them to help my sleep. But, long term, wasn't good for me. Mast cells won't degranulate when you sleep. But, can make sleep impossible if they are going off while you "try" to sleep. Another friend and I are in the middle of experimenting to put this all together into a paper. We are close to having details worked out, it will likely be on Healthrising. He and I diligently research and are near to some pretty major hypothesis that connect a whole lot of different things. His name is Dejurgen and his comments are well worth reading. He gets more of the science in his comments. I try to be more "lay" person commenting. Trying to make it less technical for us with brain issues.

https://www.ncbi.nlm.nih.gov/books/NBK28245/ Here is a link to an article and how histamine can actually be a benefit to the body and brain function. Just needs to be moderated and H2R turned on by histamine moderates it.

@yogini I found dairy and gluten to cause that gas feeling. I'm not celiac, but sensitive to both. And foods are my worst trigger for MCAS. Especially nightshades. Dairy is usually eliminated by many with autoimmune dysfunction and gluten eliminating takes down a lot of inflammation.

Here is the link to that on MCAS. I used phenergan before we knew what my problems were. But most all antihistamines, over time can affect brain function. That is what happened with me. But having a MCAS DX, I was doing 3 types of antihistamines and a mast cell stablizer. So after nearly 8 years of daily use, it really started showing up. I've written more on Healthrising about it and you can do a search and pull that up. I don't know if they will let me link here. Look under Issie. Same with this forum, you can find information that way.

One other thing we figured out by trial and error, for me. Not all people need extra salt. In fact it was most detrimental to me. I have kidney issues and that too can go along with POTS. Some have low renin and aldosterone. Florinef was a diaster for me, as was adding more salt. Normally with both those things being low, they use massive diuretics. The Mayo docs said that could NOT be done as I already had low blood volume and did not need to dehydrate on top of it. Later, we also figured out I have too thick blood. So some of the issues with blood flow was its consistency. So I vasodilate, not vasoconstrict. This is opposite of what "most" POTS people do. But this is what I need to do for my issues. I also thin my blood with enzymes. I have had all this since a child and I'm now 60 and still alive and "kicking". Had a pretty good life despite myself. A person can learn to compensate and make adjustments to "have a life". But we are all different and we don't fit into the same mold. There will be trial and error to find your own "purple bandaid".

So many people don't recognize that MCAS is a huge issue and can trigger a POTS response. I didn't know it until I started working on my own MCAS. (If you go way back, like 10+ years, on here, we had lots of discussion on MCAS and our journey finding it and getting it acknowledged. Mayo in AZ now test POTS patient for it, as my handing them a book of research had them look into it.) Many of us with both POTS, MCAS also have EDS too. We call it a trilogy. It seems to play into things. I'm HyperPOTS with high NE levels and can relate to your anxiety feelings. The norepinephrine helps speed the heart up to aid in moving blood and oxygen to the much needed heart and brain. It is very likely compensatory response. If you can move your legs more to help your heart pump blood, that response calms down some. I use a bounce ball, as a leg rest, in front of my chair and bounce and fidget my legs on it and that does help. Addressing MCAS, was when my POTS symptoms got better. Before then, was most awful. But I'm using a new approach to this and not using antihistamines, very often, and only an H1 if absolutely necessary. Trying to get H2R and H3R to activate. There is a thread on here that talks about it.

It sounds a lot like MCAS. Goes along with POTS. And you can't sleep with it. Sometimes certain foods will trigger it. I'm trying a new approach for managing it and no longer using antihistamines. There is a thread on here about it.

Trying to find another way to tame down these trigger happy, over responding mast cells......is the goal. I'm not having a huge success with the cream I'm trying now, but have another one ordered - with less ingredients. It's not a goal to add more histamine to the body. The goal is to stop so much over production of the body own mast cell degranulation. Trying to get the suppressor H2 and H3 to easier detect when it is there and maybe stop the so easily triggered mast cell response. Sort of an immunology type treatment. It's still an ongoing experiment for me. Not there yet......

I found a used book on Amazon and got that, for the same reason.

I was just sent this. This is the article that Ravikovitch tried to publish in the 90s about his treatment (it appears at the end of the book) and rejected by the well-known UK immunologist S.T. Holgate. It is a summary of the content of the book for those who do not feel like reading the entire book.https://drive.google.com/open?id=1qkm0olLzL1XOBB6rte14eJdKR9HkxCj6

@MTRJ75 I hear you. We sure have an uphill climb and a need of awareness with our illnesses. Thankfully they are becoming more known and there is more press. But, still few new "tricks" to help us. There are so many illnesses that they are finding dysautonomia and mast cell issues involved with. I have been of the opinion that there is autoimmune issues and inflammation and that may be the "core" issues. Get to the "core" of the problems and then the symptoms will fade away. But we are all so complex and there are so many different puzzle pieces to discover. There is no way possible to treat the masses all the same way because of this. But just maybe we will find a "purple bandaid", to give more quality of life as we research and continue connecting the pieces. It appears this may be a big piece to this puzzle. Let us hope so!!!! I'd like to hear how people do if they try this path. So far, I'm encouraged.

He doesn't try to hide that Big Pharma doesn't like it. He doesn't try to hide what he went through trying to get people to listen either. That actually made me pay attention more. I'm one who questions EVERYTHING. If you ask Mayo docs about me, they got really tired of my questions to them and insistence that certain things were at play. I'm the one who got Mayo in AZ to look into MCAS in the first place. I wouldn't let up as to it being connected to POTS. Now all POTS people are tested for it there. So I'm a sort of pioneer helping to make the path on this subject. "But Issie said.....", Mayo heard that a lot. Got to love them.....as they listened and looked into it. But, as all my old POTS buddies on here and elsewhere will attest to......I strongly question how POTS is managed by doctors. I feel a lot of our symptoms are compensatory responses and absolutely the lesser of the two evils and trying to right a wrong. I tried anything and everything doctors gave me in the beginning of finally being DX. And it all made me worse. Now I manage that myself and pretty well with natural things. Also tried to keep a positive attitude and not give in or give up. I still have it and have since a child. But I've had a very full life despite it. So when it comes to MCAS, never thought of it as a compensation. But this has made me take a second look. Why not, why couldnt it too being trying to correct the worst of two evils? But to learn I was suppressing H2 with medicine and doing it to myself. The one thing that needed to work......I was upset to say the least. I had already started getting off my MCAS medicines as I felt they were affecting my cognitive function. But I also was reacting to everything and they were not helping. I was getting sicker. My vitiligo was going wild and other autoimmune things were showing up. (I also had Lyme and CIRS.) I took it upon myself to seek a different approach to MCAS. One thing of benefit was a low histamine diet. Changing diet was something only I had control over. Was very necessary. Then I started using bee products for allergic responses. And also enzymes with lutolin. Then......thankfully, I paid attention when this guy posted this book. He is a wealth of knowledge and eager to share. So if you want to know more, I suggest contacting him. He is wanting to spread awareness and was a MCAS suffer himself. Histamine is being used for other illnesses of serious concern and there is much printed peer reviewed articles showing it. I'm not sure if this is the whole picture, but likely a big part of the complex puzzle we all have. I'm very hopeful. It's a work in progress.

This article gives a good overview of the Histamine Receptors and what they do. A sort of Summary/condensed version of the book. You will note that Histamine is being used for ALS. Also is being used for MS, leukemia, cancer and other things. Histamine beyond its effects on allergy: Potential therapeutic benefits for the treatment of Amyotrophic Lateral Sclerosis (ALS). Histamine beyond its effects on allergy: Potential therapeutic benefits for the treatment of Amyotrophic Lateral Sclerosis (ALS) ALS currently remains a challenge despite many efforts in performing successful clinical trials and formulating therapeutic solutions. By learning fro… www.sciencedirect.com

Here is his Twitter link. If anyone wants to contact me I can do it here and on Twitter https://twitter.com/bayard_horton