RichGotsPots Posted November 30, 2011 Report Share Posted November 30, 2011 Hi Everyone, I've been researching and researching non-stop and I've read through everyone's issues, every Dysautonomia website and it's all lead me to this post. I have a theory I'm working on and discussing with some Dysautonomia doctors. My theory only relates to our symptoms in a secondary nature because there are many primary causes and bundled all together it's causing different type of Dysautonomia. My theory unfortunately does not lead to a cure or even a cause but I believe it can help many of use with better treatment.My Theory:Our Dysautonomia symptoms are the result of imbalances in our blood pressure either systemically (through our whole circulatory system http://en.wikipedia.org/wiki/Systemic_disease), localized blood pressure imbalances (isolated to one organ at a time http://en.wikipedia.org/wiki/Localized_disease) and in some cases the imbalance of blood pressure disseminates to other organs (starts in one but spreads to others http://en.wikipedia.org/wiki/Disseminated_disease).Explanation:Our Autonomic Nervous systems (ANS) ( Para and Sympathetic) control our "flight or fight (FoF)" response but they also control our blood pressure using arterial sympathetic tonus which is separate from our FoF response. Our two ANS systems basically play a ping pong match to keep everything stable. Depending on what organ of the body either one (Symp or Para) constrict or dilate. I pasted examples below from Wikipedia. You will see Mast Cells, Blood Vessels, Digestive tract, Endo and Urinary, etc... Basically all Dysautonomia patient symptom areas. Okay so that's the basics, here is the details. I believe that at the heart of our Dysautonomia symptoms are our Arteries. Depending what primary disease, illness, complication, whatever... they are effecting the pressure in our arteries. This pressure is then causing our symptoms. And depend what primary issue you have it can affect our pressure systemically, locally or by diffusion. I believe there are two keys to lowering our symptoms. 1. We find the primary disease and we treat it. Unfortunately it seems that most of our primary disease have very poor treatment options and just are rarely curable and sometimes hardly manageable.2. Is we locate our blood pressure issue, especially if it is localized and we get doctors to treat specific local blood pressure issues. Here are some of the local blood pressure issues I've found thus far.A) Pulmonary Pressure- Breathing issues, faintness http://en.wikipedia.org/wiki/Pulmonary_hypertension Intercranial Pressure- Brain issues- may cause dizziness, nausua, headaches http://en.wikipedia.org/wiki/Intracranial_pressureC) Renovascular hypertensions- Kidney issues- http://en.wikipedia.org/wiki/Renovascular_hypertensionThese are just a few of the more prevalent localized BP issues but there are others. Treatment is not great for BP issues because most medicines operate on a systemic level and go into our entire blood stream. And if a patient is has Pulmonary Hypertension but has systemic Hypotension then anti hypertension meds will help the breathing issues but exacerbate the systemic Hypotension. The hope is that they find meds that are selective to certain organs. They do have such meds for certain treatments and they are called "selective."Also note worthy is that hypertension is related to Mitochondrial issues, Nitric Oxide issues, endothelium issues and a few more vascular issues. And there are new CT Scans (which I posted) that will help diagnose they BP issues in the future...http://en.wikipedia.org/wiki/Autonomic_nervous_system Blood vessels Target Sympathetic (adrenergic) Parasympathetic (muscarinic) vascular smooth muscle in general α1:[5] contracts; β2:[5] relaxes M3: relaxes [4] renal artery α1[6]: constricts --- larger coronary arteries α1 and α2[7]: constricts [4] --- smaller coronary arteries β2:dilates [8] --- arteries to viscera α: constricts --- arteries to skin α: constricts --- arteries to brain α1[9]: constricts [4] --- arteries to erectile tissue α1[10]: constricts M3: dilates arteries to salivary glands α: constricts M3: dilates hepatic artery β2: dilates --- arteries to skeletal muscle β2: dilates --- Veins α1 and α2 [11] : constricts β2: dilates --- [edit]Other Target Sympathetic (adrenergic) Parasympathetic (muscarinic) platelets α2: aggregates --- mast cells - histamine β2: inhibits --- [edit]Respiratory system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) smooth muscles of bronchioles β2:[5] relaxes (major contribution) α1: contracts (minor contribution) M3:[5] contracts The bronchioles have no sympathetic innervation, but are instead affected by circulating adrenaline [4] [edit]Nervous system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) Pupil dilator muscle α1: Contracts (causes mydriasis) - Iris sphincter muscle - M3: contracts (causes miosis) Ciliary muscle β2: relaxes (causes long-range focus) M3: contracts (causes short-range focus) [edit]Digestive system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) salivary glands: secretions β: stimulates viscous, amylase secretions α1: stimulates potassium secretions M3: stimulates watery secretions lacrimal glands (tears) β: stimulates protein secretion [12] --- juxtaglomerular apparatus of kidney β1:[5] renin secretion --- parietal cells --- M1: Gastric acid secretion liver α1, β2: glycogenolysis, gluconeogenesis --- adipose cells β1,[5] β3: stimulates lipolysis --- GI tract (smooth muscle) motility α1, α2,[13] β2: decreases M3, (M1) [4]: increases sphincters of GI tract α1,[5] α2,[4] β2: contracts M3:[5] relaxes glands of GI tract no effect [4] M3: secretes [edit]Endocrine system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) pancreas (islets) α2: decreases insulin secretion from beta cells, increases glucagon secretion from alpha cells M3[14][15]: increases secretion of both insulin and glucagon.[14][15] adrenal medulla N (nicotinic ACh receptor): secretes epinephrine and norepinephrine --- [edit]Urinary system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) Detrusor urinae muscle of bladder wall β2:[5] relaxes M3:[5] contracts internal urethral sphincter α1:[5] contracts M3:[5] relaxes [edit]Reproductive system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) uterus α1: contracts (pregnant[4]) β2: relaxes (non-pregnant[4]) --- genitalia α1: contracts (ejaculation) M3: erection [edit]Integumentary system Target Sympathetic (muscarinic and adrenergic) Parasympathetic sweat gland secretions M:[5] stimulates (major contribution); α1: stimulates (minor contribution) --- arrector pili α1: stimulates --- [edit]References Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted November 30, 2011 Report Share Posted November 30, 2011 Thanks for your post. My BP can bottom out or surge with the slightest of activity (stress factors seemingly the same). I have been trying and trying (falling on deaf ears) to get my neuro to order a sitting MRI for me (having 7 mm Chiari I malformation in lying position). I cannot get her to understand the pull of gravity on the cerebellar tonsils that can impede spinal fluid flow around and in and out of the brain (also in my case with EDS and dysautonomia). She 'doesn't know what diagnosis to use to code it to get the ins. to authorize it' (I suggested Chiari I malformation in EDS as subcode). She didn't know where they even do sitting MRI's (which was a 'starting point' that I suggested), and I'd told her I'd done my homework and that there is one about 2 hours from here and that if she is not familiar with what I am speaking, I suggested she look on the imaging center's and the Chiari Institute's website as they offer pretty convincing education (Chiari Institute offers video demonstration).I was told by my cardiac specialist in dysautonomia that my ANS was 'failing' and I'd have fewer warning of syncope and could well anticipate pacer since heart rate stays in low 60s rather than tachy when BP plunges. I had read that it is theorized the sympathetic/parasympathetic nervous system may take over what it can when the autonomic nervous system fails. But I know so little and really applaud your research. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 30, 2011 Author Report Share Posted November 30, 2011 Here is also a list I found of Antihypertensive meds, but remember most of these cross the blood/brain barrier and then affect our whole body instead which is not good because some parts of our body need vaso constriction and some need vaso dilationhttp://en.wikipedia.org/wiki/Antihypertensive_drug Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 30, 2011 Author Report Share Posted November 30, 2011 Just to give you an example of why you need to be careful with ANS and BP meds: Lets say a patient has asthma and they take inhale Albuterol, Albuterol this a b2 sympathetic med and it is not selective to the lungs. So from our mouth and our lungs it then travel through our bloodstream and has sypathetic affects on other parts of our body. For example in known to cause Tachycardia and that is because it is activating our sympathetic response in our heart, relaxing is so it can beat faster. For use POTSy people it's not a good affect... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 30, 2011 Report Share Posted November 30, 2011 You should review the research on POTS and see whether it conforms with your theories. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 1, 2011 Author Report Share Posted December 1, 2011 can you send me some, I'm just starting to dive deeper into circulatory research? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 1, 2011 Report Share Posted December 1, 2011 try Google. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 1, 2011 Author Report Share Posted December 1, 2011 Trust me I've googled it to death, it all correlates. BP issues are the long tail end. All other things that have been mentioned, Mast Cell, NO levels, Endothelium, Mito, EDS, Immuno def, and many more.. are all the middle of the tail issues affecting BP locally. The stub of the tail/ the causes are multiple as well because they all activate the middle tail issues. Those stubs are Lyme, viruses, chemical, trauma and many many more. Great to know the stub, but most likely it's long gone and it's already activated the middle tail problems. The middle tail problems might still be creating choas and more damage so def good to find those and treat those issues at the very least to stop further damage.But the long tail is the damage already done and the issues it's causing. When someone gets a heart attack, it could be for 20 different reasons, but the the most effective thing is to check the blood. Check it for clots, check it for cholesterol and make sure that is good and maintain a health blood pressure. For right now I'm personally checking out all of my pressure issues, but unfortunately checking involves tilting because posture has a different affect on us than general populations... Quote Link to comment Share on other sites More sharing options...
issie Posted December 2, 2011 Report Share Posted December 2, 2011 You have to determine what the fine line of medicine is - how much is enough and how much is too much. That's the balance. Yes, it affects the whole body - but to support the organ in a chronic eposide - you have to balance the side effects with the desired effect on the organ in need. The whole body is connected - unlike how the typical medical doctors want to seperate us into a jillion pieces and treat the dysfunciton of that organ and send us to another doctor for a dysfunction of another organ. We have to connect the whole body and not dysect it and pretend that one dysfunction doesn't affect the whole. I'm not sure that western medicine even has the answer, because of this reason,. I'm not sure that a compound that has been extracted from a natural plant and refined is the answer. We have to get back to the basics - don't think that one doctor or one medicine is the cure. It won't be. This is too complex and is all connected.I disagree with the way some people are being treated for their POTS. I think some of the treatments are DEAD wrong and that will be the outcome for some - if they continue just accepting the traditional treatments. I don't know the answer - but do feel that the treatments thus far - are wrong. I think some of us that are on no meds - may be fairing better than some who are on meds. The side effects of one med has to be corrected by another med and then the side effect of that med has to be corrected with another one. The body gets so confused in how it's supposed to function that it can't/won't function on its own. Then there is such a massive state of confusion for the body - the person enduring that life - and the doctors. Nothing or no one knows what to do. (Excuse my RANT, but needed to be on my soapbox for a minute. LOL!)Issie Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 2, 2011 Author Report Share Posted December 2, 2011 Thanks everyone and Issie! I just want to point out while I am calling this a theory, it's not out of left field. If you go to the list of mechanisms http://dinet.org/what_are_the_mechanisms_of_POTS.htm you will see that almost every mechanism list related to Vascular issues and I'm merely pointing that vascular issues can and often do have an effect on BP. I'm not going through each mechanism one by one but this chaotic vaso regulation is being pointed to as the problem there. So just suggesting that if they are pointing to mechanisms of vascular issues in all different areas of the body, the legs, the brain, the stomach and not just systemically then I think it points to my theory... Since i can't and won't recommend any meds because I'm not a Dr I am just making sure when I ask my dr, how certain meds act on vaso regulation in different parts of the body. Again my example is BetaBlockers. They have a constricting affect in the lungs and a dilating affect in other areas. So I'm just knowing my trouble area and trying not disturb them.. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 2, 2011 Report Share Posted December 2, 2011 "They have a constricting affect in the lungs and a dilating affect in other areas."It's mostly the non-selective beta 1 and beta 2 blockers that can produce problems with bronchoconstriction. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 2, 2011 Report Share Posted December 2, 2011 "but remember most of these cross the blood/brain barrier and then affect our whole body instead which is not good because some parts of our body need vaso constriction and some need vaso dilation"Every medication taken orally affects the whole body. The blood-brain barrier exists in order to protect our central nervous system, but every other organ will be affected by any medication that we take to some degree. Personally, I'd rather figure out what is actually causing my circulatory issues and try to treat it, thus resolving my BP/heartrate/and other POTS symptoms to some degree. Example: my BP goes up on standing. However, the Mayo clinic determined after extensive testing that my high norepinephrine levels while upright are solely the result of my body trying to maintain proper bloodflow to my brain. So, for me it is actually helpful to increase my blood volume with compression, fluids, and salt. These treatments have actually lowered my BP while upright, reduced my Raynaud's problems, and improved my chest pain.Another example: my mom has carcinoid syndrome. Her tumors produce excess vasopressin, serotonin, histamine, etc. depending on which tumor is more active at the time. If one day her BP is high because of excessive vasopressin, giving her vasodilators will only help briefly and actually will make her worse because the rebound drop in BP will put more stress on her system. However, treating the "tail" of her symptoms with octreotide, therefore stopping the tumors from secreting the excess chemicals, will treat all of her symptoms at once.I think that there are occasions when patients are left with no other choice but to try to treat just the symptoms. However, it's usually much more effective to address the cause. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted December 2, 2011 Report Share Posted December 2, 2011 Hi Rich, what do you mean by intracranial pressures causing the dizziness, heachaches, etc? I think dr.'s have determined that the headaches and dizziness are caused by cerebral hypoprosion because of the reduced blood flow to the brain. The pressures in the head are actually normal. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 3, 2011 Report Share Posted December 3, 2011 Issie, i completely agree with you, an holistic spproach is required. Check out this woman dr on youtube that cured herself of ms by changing her diet. Btw, obviously some med conditions require drug intervention.... Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 4, 2011 Author Report Share Posted December 4, 2011 "They have a constricting affect in the lungs and a dilating affect in other areas."It's mostly the non-selective beta 1 and beta 2 blockers that can produce problems with bronchoconstriction.Can you please one beta blocker that is selective? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 4, 2011 Author Report Share Posted December 4, 2011 Right, all meds affect our whole system, but some are more selective then others is my point. The blood/brain barrier is an indicator of how non-selective a med is. The "non-selective beta blockers" are still still not safe for asthma people, but they have slightly less constriction on the lungs. Slightly less not really what I call selective to the heart.For example Invibradine affects the heart and has no noticeable constriction to the lungs. That's selective and we need more meds like that.People who have regular hypo-tension or regular hypertension as measured by the arm and who have no other issues would seem to need a medicine that handles they're whole body issue which you describe. But my theory is that, while some people have that, they may also have isolated hypo/hyper issues to local organs or areas of their body. Once you dive into the research you see that this diagnosis is becoming more prevalent in many regions of the body, Kidney's, Prostate, Brain, Lungs, Legs where the patient has perfectly regular BP systemically. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 5, 2011 Report Share Posted December 5, 2011 atenolol and metoprolol and types of selective beta 1 blockers Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 5, 2011 Author Report Share Posted December 5, 2011 Here is a research article about Pulmonary Hypertension and you can see the similarities between Dysautonomia and PH especially in theories of mechanisms and causes http://circ.ahajournals.org/content/114/13/1417.full Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 5, 2011 Author Report Share Posted December 5, 2011 atenolol and metoprolol and types of selective beta 1 blockersI looked up the most selective Beta Blockers for example and they say they still constrict in the lungs 20-30%. I don't know about you but when you can't breathe any constricting of the lung is very very bad. Also the main medicine that Pulmonary Hypertension suffers are advised to avoid are, yup you guessed it Beta Blockers. Even though PH patients have tachycardia because of blockage in the pumping from the heart to the lung blood vessels. By the grace of God, many doctors when I was in the ER, every time wanted to try to slow down my pulse using Beta Blockers and each and every time for some reason I refused. Thank you God!! Quote Link to comment Share on other sites More sharing options...
issie Posted December 6, 2011 Report Share Posted December 6, 2011 Again, Rich your comments make me think that maybe Mack's Mom is right on about you possibly having MCAD. With that we aren't supposed to use beta blockers either. It makes things worse. I've tried about 5 different kinds and all were BAD for me. I have hyperPOTS and high noriepi levels and very probable MCAD issues. So, much so that there is a good chance that I have Krounis Syndrome that affects the heart directly by mast cell issues. Nitroglycerin is what I was given and it helped me a whole lot. That also goes back to thinking there could be a NO (Nitric oxide) deficiency. This could also affect the lungs. You might figure out where the dysfunction is' but, the most important thing is what is the FIX. Sometimes, it might be better to try what could be the fix and then the cause can come later. Have you tried anything that will increase your NO levels. Have you had your noriepi levels checked? Is there an NET disorder? Have you tried things to help an NET disorder? Sometimes, we can rule out or make plausible things by our own experiements. I do think sometimes that using our own insticts will help us figure things out. We know our bodies and if we understand how they work - we might can figure out where the dysfunction is. We have to tune in and not trust that a doc is going to know the best thing for us. We have the right to decide what we do or don't do. But, we need to be educated in order to our decision be a wise one. I watch old people who trust their docs and live a horrible end of life period. I don't intend to be one of those people. Like my earlier rant - we have to look at the whole. And yes, I agree - natural is probably the better way to go. I loved that video - thanks for sharing. I think that diet makes allot of sense. I know some are already on it - and they say it has made a difference. It's just changing the way the majority eat - that will be hard. We are on such a fast track with life - it's hard to slow down and -prepare- for life to be healthier. Those that do, seem to do better.Issie Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 6, 2011 Report Share Posted December 6, 2011 Rich-I too used to have extreme shortness of breathe and chest pains. I had 2 or 3 ECHOS that suggested pulmonary hypertension.. to say at the least, I freaked out. The only way they can determine it, is a heart cath. I waited one month and got another ECHO done which showed no PH. A couple months later the chest pains and out of breathe feeling stopped and then the dizziness and other POTS symptoms set in.If you want to see about PH, they told me you need 2 positve ECHOS then they will do a heart cath, but it has to be a certain pressure on the ECHO. (i forgot what it was ) Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 6, 2011 Report Share Posted December 6, 2011 Also, when I took BB, it didnt NOT affect my breathing whatsoever, just my bp (it lowered it even more). That was when I was having the shortness of breath/chest pains. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted January 29, 2012 Author Report Share Posted January 29, 2012 Hi Rich, what do you mean by intracranial pressures causing the dizziness, heachaches, etc? I think dr.'s have determined that the headaches and dizziness are caused by cerebral hypoprosion because of the reduced blood flow to the brain. The pressures in the head are actually normal.Hi Julie, did you mean to say "cerebral hypoperfusion?" I believe that is augmentation of blood away from vital organs may be causing pressures to rise especially in orthostatic positions. I'm going to see a heart and pulmonary hypertension specialist and have her test me in the orthostatic position with a catheter which is the only 100% way to test pressure levels especially in the orthostatic position. I spoke to a Harvard doc who said he saw this in a few patients... Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted January 29, 2012 Author Report Share Posted January 29, 2012 Also, when I took BB, it didnt NOT affect my breathing whatsoever, just my bp (it lowered it even more). That was when I was having the shortness of breath/chest pains.Did you see a PH specialist or just a cardiologist? I'm hopefully going to get a RHC by convincing them of our thoracic hypovolemia or hypoperfusion and how this could cause PH in the upright position.. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted January 4, 2022 Author Report Share Posted January 4, 2022 Hey everyone, So it has been officially over 10 years since I have been diagnosed with Dysautonomia and I wanted to update this decade old theory somewhat. In the last 2 yearsI have become increasingly aware and have been researching vascular compression syndromes. And wouldn’t you know it, many people with these compressions have dysautonomia. A survey of MALS patients in a large MALS Fb group showed over 50% had some form of dysautonomia. Now back in 2011 I never heard of vascular compressions and when I heard of things like MALS, maybe around 2015, I read it caused a lot of pain so I brushed it off. Well come to find out not everyone with compressions has pain. What some compression experts theorize is that the compressed artery or vein eventually leads to inflammation and and that affects the surrounding nerves eventually and leads to a cascade of other symptoms like MCAS and even mental health issues. About 33% of MALS patient reports MCAS and mental health issues that range from ADHD to Bipolar to depression and more.. So in 2022 I can say my theory has updated since I learned that vascular compressions can be causing these localized blood pressure changes. Just to list some of those compression syndrome: May Thurners, Nutcracker Syndrome, MALS, SMAS, Pelvic Congestion Syndrome, Thoracic Outlet Syndrome, Carotid Artery Compression, and many more. Basically everywhere there is an artery there can be a compressions and this can severely limit blood flow to the heart, lungs or brain. Lastly there is a Pulmonary Vascular Group at Harvard that ran a study of Chronic Fatigue Syndrome and POTS patients using an Invasive Cardio Pulmonary Exercise Test where they run catheters into the neck artery and up the groin while patient bike. They take blood gas and measure other things. And from that study they have found what they term Pre-Load Failure, where blood is not returning to the heart properly. They have theories why that is but they believe it is causing POTS. And I believe compressions are the cause for Pre-Load Failure… Quote Link to comment Share on other sites More sharing options...
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