Pistol

My cardiologist and PCP don't even schedule me with PA's because they do not expect them to know about POTS. So - your doctor should be proud that you feel in good hands with him and agree with seeing you personally every time.

Hello @lamp_girl - yes, this sounds close to what I experience when I have hyperadrenergic symptoms. In my case I always also get cold hands and feet. At times I can stop them by immediately retreating to a dark, quiet room and lying down. If I am not able to do this then I usually either pass out or have an autonomic seizure. I personally have never taken Ativan for this but was told that Ativan does not work for this. I take 0.5 mg of Ativan at night sometimes for sleep but it has never prevented any episodes, I would still get them during the night sometimes despite taking the Ativan that night. -- It is a good thing if Ativan helps you, that way you have something you can take at the first sign of trouble and hopefully prevent a full episode. Best of luck!!!!!

@pinkpoet8813 - I am very sorry about your experience. You mention that you would like to keep the doctor but avoid the PA. I would call the office and ask for the person that handles complaints or patient experiences. The I would tell that person about your terrible experience and that you no longer feel comfortable with that PA but would like to keep the cardiologist. Then schedule an appointment with the DR. This is what I did with a PA for a dermatologist who did a procedure on my teenage daughter and caused her a lot of trauma and pain. Since then she no longer sees that PA but a very kind dermatologist in the same group. You do not have to put up with this abuse and rudeness - you have the right to see who you want, it will just mean that you have to wait longer for your appointments. Best of luck - don't put up with insensitive docs!!!!!

I have prinz-metal-angina. I do not actually feel like my heart is "spasming" - I just get chest pain. And I was never told that my EKG changed during an episode of angina ( monitored in ED, telemetry units, implanted loop recorder etc ). I was diagnosed after a heart cath.

@Derek1987 - hot foods cause vasodilation, hence the sweating and flushing. This happens even in "normal" people. I would avoid spicy foods for now.

@Yhoun - ask the pharmacist before filling your prescription, they will know exactly about the breast feeding while on florinef.

@potsiebarbie - to answer your questions: salt along with added fluids help the BP to stabilize. For drinking I was advised to drink 8 oz water every hour at least but most memebers drink more than that. I personally do not tolerate plain water, so I drink ginger ale. When I am in a flare I drink Gatorade and broth since they are rich with electrolytes. Salt tablets make me sick, so I just add salt in my diet with pretzels, pickles or olives, heavy table salt with everything. -- Compression stockings help prevent blood pooling and drop in BP when standing up ( which is what causes orthostatic intolerance ). But they have to be fitted to your body. If there is a medical supply store in your town I would go to them, they can measure you. If you order from amazon or other online sources you should measure your calf and thigh ( at the thickest part ) and compare on a sizing chart before you order. They are VERY effective!!!! - And to your last question: yes, I have experienced shortness-of-breath when I was at my worst. I still do if I am in a flare. --- Best wishes to you!!!!!

@Ragnar - I happen to have a very good PCP who has been with me sine my very first syncopal episode and he knows that I am capable of doing my own research ( I was a RN before becoming disabled ). So I presented him with articles, stories from people on this forum who get weekly infusions etc. But what mostly did all of the talking was that he could see with his own eyes how miraculous the effects of IV fluids were on my BP, HR and general well-being every time I ended up in the hospital. So when eventually a hospitalist refused to put me in the hospital for fluids because I "could drink " and I ended up in the ED with seizures and was admitted anyway … he finally agreed to let me have the port and home infusions. So in other words: persistence, self-education and nagging. That is what got me there.

@Trying - until recently I had the same problem with nightly urgency and urinating too much and too often during the day. Since I started with weekly IV fluid therapy it all changed - I no longer pee too much, I sleep through the night without urinating, I am no longer retaining fluid ( 5 lb weight loss without diet changes ). I believe that it is caused by the electrolytes in the fluid ( lactated ringer solution ) are creating a healthier fluid and electrolyte balance in the body. The fluids also greatly improved energy, OI and exercise tolerance.

@Derek1987 - do you have swelling or color/temperature change in the right calf, the one that burns?

@Clb75 - I have a nurse come in the morning to access my port and I run the fluids over 8 hours, then de-access the port myself. If I need to I can run up to 3 litres over 24 hours (if I am feeling poorly). -- Many people can get the fluids in an infusion center with peripheral access ( normal IV ), but in my case I live 1 hour away from the nearest hospital since I live in a very rural area. We tried weekly infusions in town with a peripheral IV ( 1 l over 2-3 hours ) but it did not provide the long-lasting improvement as the 8-hour infusions. Hence the port and home IV's. For anyone in a city a trip to an infusion center would probably recommended first, since ports have risks.

Hello @potsiebarbie - I am sorry you have to deal with all of this on top of being mom!!! I have to tell you that I too remember the fluctuating, erratic HR and the feeling of derealization. In the beginning of this illness I kept going to work (12 hour shifts) and had a 1 hour drive each way. One evening I finished my shift and was driving home when all of a sudden I started feeling like everything was not real. It was like I lived in a bubble and everyone else was outside of that. I stopped my car and went into the nearest Walmart - just to be around people and to get a sense of reality again. After awhile I needed to go outside and get fresh air and after a walkaround the parkinglot I felt better and drove home. I saw my PCP and told him about that episode and he was quite concerned. Soon after that I was diagnosed with hyperadrenergic POTS by a specialist. --- I did not improve significantly until I started taking beta blockers and the usual treatments recommended for POTS, but it took years and many trials of meds before the right "concoction" evolved. Please be careful and do try the meds your doc prescribes. There are no sure meds for dysautonomia, we all have to endure the frustrating process of trial-and-error. If your BP runs low then florinef sounds like a reasonable choice. But DO add salt, hydration and compression hose - they add a lot to symptom relief. Best of luck!!!!

I am starting this thread to list the major improvement I experienced from weekly IV fluids for hyperadrenergic POTS and welcome everyone who has found symptom relief from this treatment to respond on this thread. I have suffered from refractory hyperadrenergic POTS for 9 years and have tried numerous recommended medications without major improvement. Before starting the IV fluids I was mostly chair- and housebound, unable to participate in any activity that required extended periods of standing or walking ( like shopping, social events, church etc ). I had problems sleeping or doing minor house chores, cooking, showering, spending time out-of-doors; I had severe GI issues and was taking PPI/ Zofran/ Zantac/ Compazine/ Carafate for the symptoms. I had no appetite and had to eat 6 snacks a day instead of meals but kept steadily gaining weight despite not eating well ( this has proven to be fluid retention weight ). I also suffered from frequent urination and bladder problems. Chronic fatigue, brain fog and lack of energy made life difficult and resulted in a degree of depression. I had chest pain, symptomatic hypertension ( up to 160/110 ) as well as hypotension at times, OI, syncope, autonomic seizures ( due to sudden sympathetic overcompensation with cerebral hypoperfusion ) and many other cardio-vascular symptoms. When I experienced ANY stress ( illness, procedures, temperature fluctuations, overstimulation, over-activity etc ) I became unable to stand, bedridden and hypertensive. This caused many ER visits over the years that ended up too often in Observation stays in the hospital for IV fluids, I ended up being hospitalized every 6-8 weeks. Every time I was given IV fluids my symptoms would miraculously disappear, BP and HR improved, chest pain disappeared, urination decreased to more normal amounts, strength and energy returned. I would essentially crawl into the hospital ( where I had too many seizures and syncopal events to count while waiting for fluids ) and would walk out skipping and hopping. Unfortunateley this seemed to be a temporary effect and I would over time regress again. Finally my PCP and cardiologist agreed and approved me for a port implant in September ( after many pleas and begging from my side ). As of October 2018 I am receiving 1 l LR IV over 8 hours once weekly at home and I am a changed person. Here are the improvements in my symptoms and quality of life that I have experienced since starting the weekly infusions: - BP and HR are within normal range ALL OF THE TIME. I have not had hypertension since beginning of the fluid therapy. I was able to stop using nitrate patch for chest pain since I have not experienced chest pain since. - Fatigue and brain fog are gone, I have energy and am no longer depressed. - Exercise intolerance has improved, I am receiving PT and have been able to exercise moderately but daily with great success, OI has improved ( within limits ). I am able to perform daily mild house chores without exhaustion( provided I keep brief periods of rest ) . I am able to go on short trips ( church, shopping ) in my wheel chair without needing 2 days of rest afterwards. I am able to stand longer before my symptoms of OI start. - I have lost 5lbs of fluid weight in 2 months, this being contributed to improvement of my fluid balance ( less retention ), less diuresis and increased exercise. - My GI issues like GERD and nausea have improved so much that I am now only taking PPI, all other GI meds are no longer needed. - I am sleeping well throughout the night most nights, without continuously waking to urinate or due to insomnia, I am achieving REM sleep most nights. - I have had 0 syncopal episodes or seizures ( used to have them anywhere from several times a week to monthly ). - I have tolerated several triggers without a flare ( colonoscopy prep, respiratory infection ). In the past these events would send me to the hospital. - I can take a shower standing up. I can cook a meal. I can vacuum one room without needing to take a break . I can take the dog for a short walk. I can watch a whole movie. I can enjoy company without needing to lie down. - Yesterday I danced because I felt so good. And nothing bad happened. Please - I would like the medical community to recognize this proven treatment as a way to considerably improve the quality of life in patients with refractory POTS. I am proof of that.

@Trying - when the blood pools it sets off the ANS trying to compensate and pump the blood back through the body, hence the tachycardia and drop in BP. This mechanism is very exhausting and causes a lot of stress to the body, that is why she is so exhausted. We use up an enormous amount of energy simply trying to be upright, even sitting is a workout. Rest makes this worse but we also are exercise intolerant. So - in addition to the usual teatments that she is already doing what has helped me in the past are leg and core exercises. I actually was referred to a physical therapist who taught me many exercises that improve blood flow and improve orthostatic intolerance, most of them can be done while lying down! If you want more info on these exercises you are welcome to pm me and I will share them. But it may be advantageous for her to see a PT - depending on your insurance they even come to the house if leaving the house is a problem for her.

I became sick with POTS at 42 but I had symptoms all of my life, just not bad enough to cause alarm.

@MeganMN - I would tell him exactly what you tell us, that the metoprolol causes you to have bradycardia and fatigue and that you would like to try propranolol. I have already askes my PCP and cardiologist for certain labs or about meds that have been recommended on this forum and they both were happy to try whatever I ask for. They know that I do my research and also check with this forum on certain things and they know that I keep more informed on anything POTS than they are. Having said that - your cardiologist may not be as open to suggestions, but he works for YOU. If you tell him why you would like to try this med and he has no real reason that would prevent you from trying it he should be willing to give it a try. This whole dysautonomia thing is all about trial-and-error. Good luck - keep us posted!!!!

It looks like it could be.

Yes - I second what Lily said - you do not have to have NOTICABLE pooling in order to have POTS. Sometimes dysautonomia symptoms stem from vasoconstriction and other times from vasodilation and then again other times from both … what matters is the degree of dysfunction and the effect it has on your life - as well as what meds help.

@MeganMN - I too was a nurse and passed out at work in the hospital soooo many times … I was on Metoprolol and the same thing happened to me. Now I am on Carvelidol and it keeps my HR and BP in line for the most part. I would recommend to cut the Metoprolol in half and then go up a little if needed. I encountered that the Metoprolol worked for a whike and then stopped working, so we had to keep going up and up slowly. Same thing with Carvelidol - I started at 3.25 mg and now take 25 mg but it is still working ( although I take several other cardiac meds ). Good luck!!!!!!

When I get blood pooling my feet turn red and there is a white strip just below the toe line. My legs feel really heavy and tingly. All of this is relieved by lying down. Also - when my legs are dangling they turn color, it's called livedo reticularis.

When I first started with POTS I had the PVC's really bad as well as the tachycardia. Numerous halters and an implanted loop recorder showed just PVC's. My specialist says they are extremely common in POTS - almost a necessity. He explained to me that they are due to the ANS becoming overactive, essentially an alarm system for us to know we have to stop and rest. Mine are almost completely gone with medication, BB being one of the most helpful. I take Carvelidol, which out of 3 BB's I tried is the only one that stopped them.

Hello @Justlooking - yes, all of my autonomic testing came back completely normal. I had it done at Vanderbilt years ago, at the onset of my symptoms. I also had 2 TTT's done, the first one showed NCS and the second one was interpreted as normal, although later it was found to be positive for POTS ( the cardiologist was not knowledgeable on how to diagnose POTS ). Only a year later after seeing an autonomic specialist who drew catecholamines was the diagnosis of hyperPOTS confirmed. The autonomic testing can be false-negative just like any other autonomic related test b/c our symptoms are never consistent. The docs really need to take symptom severity into consideration and not only concentrate on tests.

I used to have the same issue - every morning was essentially a full colonoscopy prep! This was - for me - a sign of uncontrolled POTS. As soon as my POTS symptoms got under control with cardiac meds as well as rest and fluids the diarrhea/nausea/heartburn went away. Between my PCP, cardiologist and gastroenterologist it got under control. But I had to change my diet ( avoid dairy and raw veggies ), eat 6small snacks a day rather than 3 meals, drink electrolyte-rich fluids and take GI meds ordered by my GI specialist. In my cas it was the sympathetic NS acting up and causing the GI problems. Hope you will feel better soon - just take care of yourself!!!!

Dear @Brokenandalone - I have been in your shoes. The medical community treats POTS patients like that ( dismissive, rude and ignorant ) because they do not understand POTS and also do not want to hear about it. I am sorry you had these bad experiences. Having said that: you need to be brave and go to the ER for your vomiting, pain etc. This will be recognized by the ER docs and should be treated with testing and - most importantly - IV fluids. Once you had them you should feel much better, physically and emotionally. The you should roll up your sleeves and find a good PCP. Ask around and see who has a good one to recommend. Make the appointment and go there with a list of all your symptoms ( including your fear of hospitals and your depression ). Don't worry - that does not make you a psych case - it is understandable to develop depression and anxiety from our symptoms alone, not mentioning the added stress from being dismissed. I too was depressed and anxious when I could not find help and did not understand what was wrong with me. -- Please - be brave and get this current medical problem checked out and fixed, then go on from there. We are here for you to listen and share experiences but YOU have to take the step to go to the doctor. Be well!!!!!!

@Cody - the gastro issues you describe sound identical to the ones I have from POTS. Is it possible because of the stomach you are dehydrated and that is what is causing the high HR? - You really should be evaluated by a gastroenterologist and have a scope done. You very well may have a stomach ulcer. The heartburn and excessive acid will cause chest pains like you describe. My symptoms greatly improved with medication ( PPI, Zofran, Zantac ) as well as frequent small snacks rather than meals. Hydrate!!!!!! Drink electrolyte rich fluids ( Gatorade, broth ), stay away from spicy, greasy, gassy foods as well as dairy, eat cooked rather than raw veggiies. These are all things that were recommended to me by my GI specialist and helped. But most importantly pick up the phone and schedule an appointment !!!!!!!!