issie

Yes, there are many genetic connections in my family with dysautonomia. Issie

Ha!Ha! Of course, it's not some exotic, new catagory. Needed that chuckle. Can you give us a preview of what they are thinking for the trilogy? Issie

I think there is genetic connections. Much research thinking there is a connection to dopamine levels and that's the problem with Parkinson's. Issues with sodium - seems to play a part with POTS and maybe the sodium channels - questions about that. Of course, there are many of us with abnormal kidney function and that has yet to be explained reasons. The extremes in blood pressure can be one explanation - but, what causes this in the first place? Issie

My nephrologist said the constant swings in blood pressure is REALLY bad for the kidneys. He said variations in either direction will cause issues. He is all for my low-fat vegan diet and that ultimately has corrected my kidney issues. I also seldom check my blood pressure - as it is staying near normal even with standing. Addressing diet improves things if there is an autoimmune issue. I have also lowered my fasting blood sugar to normal. I'm on NO heart meds. (Of course, having MCAS - can't use beta blockers any way. As they make things worse.) But, I have tried every kind of medicine that is out there. I have seen what they do ---with my body. And with tons of research over the years ---decided this masking of symptoms is not the right way for me to go. I never gave up searching until the last year. I feel I have found my answer and no longer feel the need to "try to figure it out". I'm really into research and enjoy the science and technical things of it all. But, other than trying to help some of you here ---I've got my direction. I still have POTS and have good days and bad days ---but, I think I've got it figured out. There probably is a genetic component and then autoimmune and inflammation seems to be the underlying issues. (Of course, I also believe the biofilm/protozoa connection has something to do with it.) We are genetically pre-disposed to things and especially us that have inherited EDS and other sorts of things ----but, something usually has been the trigger and then the immune system isn't able to react properly. The whole system starts to malfunction. Working also on known methylation pathway mutations has been very helpful also. There may be a time that I will have to go back on some meds to help buffer "symptoms" and I reserve clonidine for if my bp starts to do the drastic swinging again. Two months on it before leveled that out. But, for the most part - addressing autoimmune issues and changing diet has been the best treatment to date. But, it requires being very strict on it and really paying attention to details. It's not something one blindly decides to do ----but, I really recommend it. My husband tells anyone that has some sort of illness ---you need to do my wife's diet. He is a true believer himself. I've had something since I was 8 years old and he has been with me for 33 years and seen what all I've gone through and what all I've tried. This has absolutely been the best treatment ---to date. Issie

I don't have time to respond properly to you kayjay - out the door. But, we have to know WHY - there are too many possible reasons for the dysfunction. If we are treating compensatory response ----long term we will make ourselves worse and could wind up with CHF or CKD. I have the CKD (Chronic Kidney Disease). (I've nearly reversed my CKD with diet and working on my immune system.) I've always been one to question the meds used by doctors. And FLAT don't agree with what is being used. Long term - it could have disastrous consequences. I've never beat around the bush with this opinion. And now, many of the things I've been saying over the years are coming to light and doctors are starting to agree with what I've been saying. Agree or disagree ----it's up to us what we do with our bodies. But, we can't blindly treat a symptom ---without knowing what the long term results may be. Long term, it may give less quality rather than more quality. Issie

HyperPOTS is associated with an increase in your standing NE (noriepi) levels of over 600 points, according to most docs criteria. Many of us also have high blood pressures when we stand. So many of us also have EDS (Ehlers Danlos) and MCAS (mast cell activation syndrome). Those of us that traditional POTS meds have not helped and who doctors are now treating with MCAS meds - are now showing improvements. I often say, it's hard to know what is a POTS symptom and what is MCAS. MCAS can occur regardless of posture or position and is very similar to a surge that POTS causes. There is no way to know based on your bp (for sure) whether or not you are HyperPOTS. But, some doctors have told some that they are based on their symptoms. All of us have some NE release as a compensation for posture - that is a normal body response. But, those that have an over-release that goes very high ----is extreme compensation. There are some doctors also starting to question if the body is not responding properly to NE (itself) and therefore the high release occurs. Some of us HyperPOTS people have even experimented with increasing our already high NE levels even more and keeping the levels at a more stable level through the day - to see if it would help with the NE surge that we get. Many of us have found it to be helpful and the surges to lessen with time. But, unfortunately the med we were using stopped working at day three. But, many of us are holding it in reserve for a day when we need that extra boost to have a good, turned on day. (I found it to be hard on my kidneys with a week trial, and had to stop using it.) We were using the orginal Sudafed. It is similar to midodrine and has a vasoconstricting property. Interestingly enough, my blood pressure did not go higher with it. http://en.wikipedia.org/wiki/Pseudoephedrine Mechanism of action[edit source] Pseudoephedrine is a sympathomimetic amine. Its principal mechanism of action relies on its indirect action on the adrenergic receptor system. The vasoconstriction that pseudoephedrine produces is believed to be principally an α-adrenergic receptor response.[9] While it may have weak or no 'direct' agonist activity at α- and β-adrenergic receptors, the principal mechanism is to cause the release of endogenous norepinephrine (noradrenaline) from storage vesicles in presynaptic neurons. The displaced noradrenaline is released into the neuronal synapse, where it is free to activate the postsynaptic adrenergic receptors. These adrenergic receptors are located on the muscles lining the walls of blood vessels. When these receptors are activated by noradrenaline, the muscles contract, causing the blood vessels to constrict (vasoconstriction). The constricted blood vessels now allow less fluid to leave the blood vessels and enter the nose, throat and sinus linings, which results in decreased inflammation of nasal membranes, as well as decreased mucus production. Thus, by constriction of blood vessels, mainly those located in the nasal passages, pseudoephedrine causes a decrease in the symptoms of nasal congestion. Issie

http://europace.oxfordjournals.org/content/11/1/18.full Here's a good article showing that the swings with our heartbeat and release of NE may be a compensatory thing. More doctors are starting to come to this conclusion and more research is showing this to be the case. That's why, I question the use of meds to stop this compensatory reaction. If it's our bodies way of compensation, it is trying to correct the problem and unless we can come up with the exact reason for the compensationary response of our body and correct that ---this is our bodies attempt to right itself. We need to quit trying to treat the symptoms and get down to the core reasons for things. Issie

Tachycardia can also occur because of low blood volume. If we are hypovolemic - it can be another compensatory thing. Issie

My bp swings all over the place too. It's hard to predict what will happen sometimes. I can have a very slight drop in my bp and my tachy goes wild. And mine will fluctuate drastically --very fast. Some of us are so sensitive to the slightest change and our bodies go bezerk trying to correct it. Issie

The drop in bp is orthostatic intolerance - a different form of dysautonomia. My sister has this. Your NE levels being high is probably your bodies attempt to bring your bp up when it drops and is probably a compensatory thing to constrict your veins (as NE can do that) to help increase your bp. With POTS the heart will beat faster, tachy, to try to increase the bp. Sounds like your body may be using NE. Could be related to vasoconstriction or lack of. Issie

What's this Chaos? Issie

I've also found that going gluten and dairy free, makes a big difference. So, no more Shandy's (beer is wheat). Issie

Andy, I've had POTS, MCAS and EDS for life. My first rememberance was when I was 8 years old. I've traveled a lot and been places out of the country. I've experienced and lived my life to the full. I've seen a lot, done a lot and will continue to do and experience new things. Looking back on my life - there is very little that I haven't done that I wanted to do. There are ups and downs. Good times and not so good times. But, only you can stop yourself from "LIVING" your life. You can be whomever you choose to be and do whatever you choose to do. Don't let anyone tell you any different. I've nearly died a couple of times and have had a lot of illnesses and surgeries. It changes how you look at life and what you feel is important. Don't let any day pass that you don't find some happiness or something to appreciate in your life. We can worry about the "what if's", and think of the "if only" ---but, realistically that only amounts to what we think up in our heads. We can't possibly know any of the answers to any of those questions. But, if we don't take a single day forgranted or the people in our lives that we love forgranted ---we can have a full, long, happy and productive life. This is not the end of the world and is only the beginning of a journey. Look at life as a journey, with lots of twist and turns ---but, always an adventure. You will be just fine. There are many of us that have lived long, fulfilling lives with these things. You can too. Something I wrote that I try to live by is this: Don't think about how it was, before ----that was yesterday. Look forward to tomorrow Think about what you can do "GREAT" today. We can't undo or redo yesterday, We can LIVE today And we can DREAM for tomorrow. By Issie Life is all in how we look at it ----the glass is neither half full or half empty. It is always full and overflowing. You see whatever we may see as half full---the other half in the glass is air and is overflowing even to the outside of the glass. So, the glass is always full and overflowing. Also, something written by Anias Nin that I like: We Don't See things as THEY are, We See things as WE are. It's not necessarily the way things really are ---it's our perception of what they are. You will be fine - as will the rest of us. Life can be full. We just have to be determined to make it that way. Issie

It also can happen when you have a MCAS attack. Issie

"My official diagnosis was hyperadrenergic orthostatic intolerance. I had elevated levels of norepinephrine in two tests." This DX confuses me then. You have high NE levels and orthostatic intolerance ---but, you don't have an increase in your heart rate with standing. So why do they think this is? Does your blood pressure stay the same, drop, or go up with standing? Issie

I personally, question a lot of the drugs that POTS people are put on. Some of what is happening with us is a compensatory thing and necessary to correct things. Chris, Since you have the HyperPOTS DX - now you can look into EDS and MCAS. Lots of us with HPOTS - have these two other things too. Some sort of trilogy. Issie

Have you looked into MCAS? Some of us have higher hr and higher bp's with this and treating it has helped to stabilize that part of POTS for some of us. We still have POTS and still have tachy and all the things that go along with it ---but, it's not as bad. I've found that motherwort and blk. strap molasses help with tachy. I also have used clonidine for 2 months and that helped with liable bp. When I came off it - that drastic swinging didn't come back. Also, most of us with MCAS can't use beta blockers as it degrantulates the mast cells and will make us worse. I'm finding a low fat vegan diet is helping me more than anything else I've tried. I'm having good improvements. There are threads on what I'm doing and my findings. Issie

Okay, so what is your DX? Mayo is a well oiled/run machine of a place. Pretty amazing. Most have had good experiences here in AZ as well. Issie

Have you looked into MCAS? We have to take H2's and H1 daily. Some people take them more than once a day. My doc told me to not take an H2 without an H1. There is another thread on this. The H2's can cause more inflammation and the H1 modify this. He also said that the H2 would convert to H1 if taken by itself if mast cell activation is a problem. Also, have you ever tried food combining diets. There is a lot of info on this and how the acid needed for certain foods are different. If you combine the foods wrongly - then the reflux gets worse. I have a friend that tried every kind of meds there were for his reflux and his wife - started him on the food combining diet and he no longer has an intestional issues nor reflux. Would maybe be worth looking at. Issie

I talked to my kidney doc about Maia and told him what she found out. Since I have EDS and am overly stretchy and also have had to have bladder and uterine suspensions (before my hysterectomy) this could be a strong possibility for me. I also have problems with lying on my sides and the cardio doc can't attribute the feelings that I have on my left side to my heart - so it probably is kidney related. My doc said this is a good possibility and he could do testing to determine this ---but, he would not want to do surgery unless it was just not tolerable. With me having POTS, EDS and MCAS he just doesn't want to take the chance with me. I could have it documented and checked out, but if I'm not going to do anything about it ---I don't see the point. If I get worse with time - then at least he is aware that someone else found this out and he is open to testing for it. He did not feel that I had nutcracker syndrome though and he is aware of it because he has patients with that. Issie

I keep telling people I'm over constricted and no one seems to get that. It is odd since I have EDS. But, anything that constricts me, makes me worse. I didn't do well on Lorsartan though and had expected to do well with it. But, I wonder if it's because I already have low renin and aldosterone and it would potentially lower that more. Glad your son is doing so well. Issie

Some of us seem to not need more vasoconstriction peripherially. Issie

Snorkels also constitute respiratory dead space. When the user takes in a fresh breath, some of the previously exhaled air which remains in the snorkel is recycled into the lungs, reducing breathing efficiency and causing a build up of carbon dioxide in the blood, which can result in hypercapnia. The greater the volume of the tube, and the smaller the tidal volume of breathing, the more this problem is exacerbated. A smaller diameter tube reduces the dead volume, but also increases resistance to airflow and so increases the work of breathing. Occasional exhalation through the nose while snorkeling will reduce the build up of carbon dioxide, and help in keeping the mask clear of water. http://en.wikipedia.org/wiki/Snorkeling Here's info on rebreathing with snorkels increasing CO2. There's lots of info on this in dive information. Issie

Yes, expensive hospital stay. Triggered by a mast cell degranulation event. Nitroglycerin helped. They thought it was a heart attack, but no heart muscle damage. Was a MCAS eposiode. Called Kounis Syndrome. Issie

http://forums.dinet.org/index.php?/topic/18979-standing-co2-clue-to-why-we-get-lightheaded/page-2?hl=+carbon +dioxide Here's a post where we were talking about this. CO2 also can cause dilation. So, maybe there is too much dilation going on and we are also trying to eliminate the CO2 and cause more vasoconstriction. I know there is a fine line with me as to constriction and dilation. Issie