Pistol

@MTRJ75 - CONTROLLING the ANS is a pretty big goal! Many have tried and failed ... 😒 There is a concept called Limbic Reconditioning that is supposed to retrain the brain. It is one of those things where you have to buy the book in order to find out what it does ( tells you something right there ). Since I live in a completely cell phone free zone in the mountains we get many people from all over the US claiming to be sensitive to electro-magnetic waves from cell towers and powerlines, fluorescent lights etc. They move here with the book in hand but I never see anyone being cured... Retraining the ANS in dysautonomia may be too big a feat to take on - ? Since it is the AUTONOMIC Nervous system you may have less control over it than you wish. However - I have learned in my own life that the attitude towards our illness can give us back a great deal of power over our body. Simply realizing that I cannot change things, that i have to accept my limitations and then finding a way to live DESPITE of POTS has given me back a degree of power to live with POTS. Maybe that can be considered a type of retrainnig as well??????

@Clueingforlooks - it sounds like you might be in a full-on flare. It looks the same for me: extreme fatigue and low energy, Reflux and constant nausea, diarrhea, weakness, orthostatic intolerance, shortness of breath, brain fog and other cognitive issues .... unfortunately rest and avoidance of overstimulation is necessary to get over it, and patience. In my case the only thing that brings me right back are IV fluids - foolproof instant fix. For the GI issues: when I was at my worst my GI put me on GI cocktail. It's a mix of Mylanta, viscous lidocaine and Phenobarbital ( or Donnatal ) that calmed the GI tract down really well for me. Once the Flare was over my GI system went back to normal every time.

I am no exercise Pro but if you tolerate it every day - why not?

@cmep37 - I too have really hard suboccipital muscles AND a rib that keeps dislocating!!!!!! --- The exercises that help the most are - what I call the chicken walk: sit down, relax shoulders with arms hanging down and back straight, move head forward and then pull it towards your spine, without moving your shoulders ... it will look goofy, like a chicken!!!! - move right ear towards right shoulder, hold it, bring back up, repeat 10 - 20 times then switch side. - Move head all the way back, as if you are looking up at the sky, hold it, move back straight; then look down at your toes, hold it, move back. Repeat 10 - 20 times. Do not move shoulders while doing this. - Lie on back, knees up, feet firmly on ground. Lift head, chin to chest, hold and release, repeat. I also use a rowing machine when able and that really strengthens the neck and shoulder muscles for me. I only can do a few minutes every few days but it helps. For the rib I learned how to put it back in by stretching from my chiropractor.

@Clueingforlooks - Zofran ( Ondansetron ) 4 times a day has helped me through my worst times with nausea.

@Nin - yes, and yes. I get breathless whenever POTS gets bad. It feels as if I am not able to breathe in deep enough. Like I can't get that deep, satisfying breath that is like a long sigh - and it's as if there is not enough air reaching the lungs. I was told that this is a common sign of POTS. And yes, I get sore throats often - I used to complain about that to my PCP, but when he checked there was no redness. And I would get it whenever I had the shortness of breath, so ofcourse I would think it was a cold. Then I had PT for a pinched nerve in my neck ( unrelated ) and the PT told me that the sore throat and the breathing difficulty can come because of lax muscles in the neck and chest, possibly caused by not enough circulation. If the muscles in the neck ( there are muscles inside of your neck too ) and in the ribs relax or tighten then it can cause these feelings. In my case it was spot on and I now do exercises for my neck and chest that have pretty much taken care of these symptoms. However - in the age of COVID I would be extra careful and ask for an exam by your doc. Frequent sore throats and shortness of breath can be a sign of illnesses, so best to get checked.

Dear @Derek1987 I have found the following article that mentions low renin/ low aldoaterone in detail. Unfortunately it is in medical lingo so I find this info interesting ( from this web site: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2265.2007.02898.x Low‐renin/low‐aldosterone hypertension can be acquired or genetically determined (Fig. 1). Several conditions should be considered in the differential diagnosis of acquired forms. First, a very generous dietary sodium intake may underlie this functional phenotype in essential hypertensive patients. This means that a high sodium diet CAN cause it. Second, low‐renin coupled with low‐aldosterone plasma levels may have pharmacological causes. Drugs reducing the renin‐angiotensin‐aldosterone system (RAAS) activation include beta‐blockers and centrally acting agents such as clonidine and alpha‐methyldopa.22, 27 Also, nonsteroidal anti‐inflammatory drugs (NSAIDs) and newer COX‐2 inhibitors inhibit the RAAS by suppressing intrarenal prostaglandin and renin secretion directly and by reducing sodium excretion, thus favouring volume expansion and aggravating hypertension. These drugs are commonly used in POTS and if you are taking them they may be a cause - please discuss with your physician. Third, a low‐renin/low‐aldosterone status may derive from a marked reduction in nephron number and function. These conditions include diabetic nephropathy, chronic glomerulonephritis, congenital solitary kidney, unilateral nephrectomy or ageing. If you are diagnosed with any of these conditions it may be a cause. - Here is another related cause: Liddle's syndrome is inherited as an autosomal dominant condition and is characterized by hypokalaemia associated with low‐renin and low‐aldosterone levels. Hypertension is often present in early childhood or at a young age and families show a high frequency of cerebrovascular events. A perhaps easier to understand article from webMD can be found here: https://www.webmd.com/hypertension-high-blood-pressure/renin-test#:~:text=High renin with normal aldosterone may show that,sign that there’s a problem with your kidneys.

@Jwarrior77 I was started on Prednisone taper this week ( low dose ) for arthritic flare and my normally very touchy ANS did not complain, except for occasional tachycardia. BP seems undisturbed. Oddly I have no signs of overstimulation or restlessness ( as is a common side effect of steroids ) but rather feel sleepy all of the time. I also do not seem to experience the hunger that is common. Maybe in my case they cause the opposite? Anyway - I am pleased with the results b/c my arthritic flare is much improved. I was afraid to take it b/c of POTS - but it worked.

Hello @RecipeForDisaster - I run my fluids over 8 hours 3 x week, and I so relate to your troubles!!! I do not tolerate them while lying down ( I retain most of them and my BP goes high ), so I run mine during the day. I also use a wheeled IV pole that can get quite difficult to maneuver. So I have installed hooks all over the house - in the bathroom, in the kitchen, on the porch etc ... instead of hauling the heavy pole around I simply hold the bag up and move from room to room and hang the bag on the hooks. It helps a lot with mobility while hooked up. I also own 2 poles ( although one is a travel one and is not very stable ). I have the heavy pole in the room where I spend most of my time ( bedroom ) and the other one in the living room, so I can simply move around with the bag.

@TigerLily - what wonderful news!!! I am so happy you found something that helps that much - and bravo to your doc!!!!

@Amyque - the symptoms you describe are familiar to me ( and probably most POTS sufferers that are not properly medicated ). I used to feel exactly like that, plus I would faint and take seizures often from it. I did not improve until I was diagnosed and treated by an autonomic specialist. If you are not currently seeing one i would highly recommend you ask to be referred to one ( see our physician tab for a listing ). Some cardiologists may be able to diagnose POTS based on the HR increases on standing but they do not know how to treat it. Most order a beta blocker and expect you to do fine - but it rarely is that easy. Finding the right treatment is highly individual and different meds work for different people, despite them sharing the same symptoms. Your HR ( especially along with your symptoms ) is nothing to laugh about, and you need to be treated for it. It is OK to look for an explanation by doing a PET scan - but treatment should come before finding a cause. Ask your cardiologist to treat your tachycardia, which he should with medications. If not you may need to see another physician. Cardiologists are not necessarily ( actually they rarely are ) able to deal with POTS, that is why you should see a specialist in addition to your cardiologist. Most people diagnosed with dysautonomia have to travel out of state to see their specialist, and almost all have a long waiting list for new patients, so getting a referral soon is important.

@green - Has anyone ever considered ADHD? I have it ( had it all my life, even prior to onset Of POTS ) and so do my siblings. I have found great improvement of fatigue, brain fog and inattention fro Ritalin. Hyperactivity and attention problems can cause fatigue, its from this article: https://www.verywellhealth.com/chronic-fatigue-syndrome-adhd-whats-the-link-3972913 Researchers concluded that ADHD and ME/CFS may share a common underlying mechanism and that over time, ADHD may develop into chronic fatigue syndrome and pain.

@green - here is a link to generalized information about fatigue : https://www.mayoclinic.org/symptoms/fatigue/basics/causes/sym-20050894 You may find more details under the chronic fatigue link.

@green - I am so sorry about your bad experience. The same thing happened to my sister overseas when she went to a "renowned specialty clinic" for autonomic work-up and was told that she does not have any autonomic issues - except they refused to do ant testing!!! At least you had testing. Knowing that you DON"T have POTS is good!!! Actually - the exercise is good for POTS to PREVENT us from becoming deconditioned. I agree with @KiminOrlando, I too know a few people who found answers and treatment once they saw a specialty clinic for CFS. And remember - CFS is a dysautonomia in itself???

@nicolet - I have GI problems from POTS, mostly severe Reflux ( caused esophagitis in the past ), early satiety, IBS-D ( diarrhea from overactive ANS ) and inability to eat regular size meals ( due to gastroparesis, although I do not have this all of the time ). I was on a TON of GI meds to heal my GI tract from all of the inflammation, and had EGD's, Colonoscopies, Gastric emptying studies and barium swallow test - all normal except for EGD's. I used to get the breathlessness aslo, from Reflux and bloating. The diet helped. What has helped me maintain GI wellness once everything healed is diet ( low acid, low carb, high protein ), lifestyle changes ( 6 -8 snacks a day and avoid meals, no alcohol, no raw fruit or veggies - just steamed or baked, no juices: mostly whole grains ... ) and PPI. When I get a POTS flare the GI symptoms usually flare up too and I often loose weight during that period. I hope you have a good GI doctor and I wish you well with your TTT - keep us posted!

I have a question regarding classification of dysautonomia symptoms. Here is the story: my sisters, mother and several nieces all have a dysautonomia diagnosis ( mine is definitely HPOTS ). Everyone else shares the same symptoms as me ( high BP, tachycardia, syncope, fatigue, brain fog, cold hands and feet etc ) , except one sister. She shares all of the symptoms EXCEPT syncope and tachycardia. She sees the same autonomic specialist as me ( he diagnosed me with HPOTS by drawing neurotransmitters and based on symptoms ), but since she does not have tachycardia she does not have a diagnosis of HPOTS. She had 2 TTT's which both were considered normal ( her BP went up but HR stayed normal ). She had no further autonomic testing so far. Her current diagnosis is autonomic disorder and autonomic neuropathy. I have researched both of these conditions and find that they are pretty much a catch-all diagnosis for everyone with dysautonomia. My sister lives in Europe and has problems getting approved for some medications b/c of the non-specific diagnosis. She will be undergoing extensive testing soon to try and find the actual condition that causes her symptoms ( she is disabled from it ). Does anyone have an idea what could be the reason she is different from the rest of us? And why would she not have tachycardia? (She did always have a slower HR, even in childhood. )

@RobinB tell your PCP that testing for a diagnosis is ( obviously ) no longer needed, so the referral to a specialist at this point would be for TREATMENT ( since she apparently gave up on that 😖). Especially since she plainly admitted to have run out of ideas the referral is sorely needed. You might want to tell your HMO that she is refusing treatment and you need a second opinion from a specialist. You can attach one of the articles from our information site that mention all of the different treatments for POTS - if she has not yet tried them all then there are many options available, and a specialist most-likely will know which ones to try. Also - if she has not yet tried IV fluids on you I would demand to give it a shot, it is a shockingly effective treatment for POTS when other things have failed. Many POTS patients use them for flares. They might help you to make it until you are able to see a better informed physician.

@RobinB - I had several thoughts while reading your unfortunate story. - tingling and numbness, loss of feeling right side could all be unrelated to POTS and from nerve compression ( as per MRI ). - chronic diarrhea, frequent urination, extreme fatigue: all typical for dysautonomia. This is what happened to me. I was extremely healthy and active up until I had my daughter - that's when many of my symptoms ( particularly the extreme fatigue ) started, but I continued working 12 hour shifts in hospital until everything collapsed on me ( literally ) 3 years later. I ended having to stop working permanently. I am diagnosed with HPOTS and I KNOW that it was triggered by childbirth. This sounds like a possible trigger for POTS. Did you have an epidural by any chance? Have they ever tested you for a CSF leak? It can be a cause for some of your symptoms, including your balance issue. I know of people on this forum that were diagnosed with POTS and ended up having a CSF leak. Maybe worth checking into? https://my.clevelandclinic.org/health/diseases/16854-cerebrospinal-fluid-csf-leak

@Dale H - I was not aware that there are two kinds of TTT. The normal TTT is when you get strapped on a bed with a foot board, so when they stand you up you bear your weight on the foot board. So there would not be a "non-weight bearing" TTT.

@boom99 - I used to have problems with diastolic hypertension like that and - in addition to other meds - Guanfacine has helped me a lot. I know of several other POTS sufferers ( with hypertension that did not respond to other hypertensive agents ) that respond well to it. I have HPOTS and it was prescribed to me by my autonomic specialist. Some people also respond well to clonidine.

I completely agree with @Dale H that consuming sodium in food beats the tablets. I cannot take the tablets b/c they make me throw up. So I consume many of the same foods that Dale H does: HerbOx broth with added salt, pretzels, olives, pickles - and I add A LOT of salt to everything I eat. However - I am not able to drink quite as much as the recommended fluids since i become nauseated from drinking too much, but if we take in that much salt we have to make sure to drink a lot of fluids since salt and fluids have to work together to be of benefit.

The explanation your doctors gave you is correct. Betablockers work in the ANS by blocking adrenaline signals to Beta-adrenergic receptors and they reduce the stress response, therefore lowering HR and BP and calming overexcited electrical activity in the heart ( PVC's ). Read more here: https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/beta-blockers/art-20044522 For people suffering from an ANS IMBALANCE, such as POTS, it is very important to take these meds as directed - which is usually daily or twice daily, depending on the medication. They work directly on the mechanisms that cause many of our problems, and therefore we need a constant level of them in order to create the balance within our ANS that they are meant to address. You might want to talk to your doctor about taking them only once in a while. In most people it takes a few weeks before the side effects of feeling tired go away.

@Sam4877 - yes, mine was around 12 mmHg, but still they did not recommend any treatment. In my case it is taken manually, so the readings are not influenced by any device-specific discrepancies )

Dear @cmep37 - having a HR as low as this AND the symptoms you describe is not common for POTS. Have you had a halter monitor? It is possible that your HR increases are a compensation mechanism from the bradycardia. Depending on the type of your bradycardia a pacemaker might fix your problems. True - pacemakers generally do not improve HR irregularities in POTS but when your HR runs slow like that it may not be the POTS what is causing it. I used to pass out and take seizures and my autonomic specialist whitnessed this in his office once. He said it looked exactly like what happens with asystole ( the heart actually stops ). He implanted a heart monitor ( called an ILR - implanted Loop Recorder ) that monitored my HR for 3 years continuously. In my case the drop in HR was brief and a compensatory mechanism by the ANS - so no pace maker was recommended in my case. It seems different in your case - your HR stays low and also causes significant symptoms. So if I would be in your shoes i would consider a pacemaker if your PCP or cardiologist agrees. Since you have significant symptoms with your low HR I would not wait 6-9 months to see your cardiologist - can you ask your GP to recommend an earlier appointment due to the severity of your symptoms? If that is not possible I would request a monitor for a few weeks that shows the bradycardia, this way the severity of it could be proven. Your GP may also order an echocardiogram ( if he has not already done so ).

Beta blockers do cause tiredness in the first few weeks, this is normal and usually improves after a few weeks. It is recommended to take them daily as prescribed in order to have a steady level in the system. Remember - we are fighting an IMBALANCE - so skipping doses will cause more imbalance. Especially with medication sensitivities it is important to take all medications as prescribed. Believe me - i have done my fair share of self-experimentation and always found that meds work best for me if taken regularly. My doc did tell me to take an extra BB when my HR races from a flare but this rarely is needed. Good job of listening to the signals your body was giving you. I am no saint and push myself beyond these signals at times still ( some things just can't wait for an impatient person ) but generally speaking I have learned that stopping when prompted by my body will prevent a few days of problems. I call it the " Stop, drop and rest" maneuver 🤣