Pistol

Yes, I also have heard about this however - I personally have never responded as well to oral rehydration products ( not even remotely ) as I do to IV fluids. Anything oral goes right through me and I pee more than I take in, however with IV fluids I do not.

@toomanyproblems - neurasthenia, soldiers heart, weak nerves, according to articles about the history of neuro-cardiogenic syncope it's what they called symptoms of dysautonomia. They also say that in the past women with POTS would baffle the docs and end up completely confined to bed until they ( prematurely ) died. Could you imagine dealing with POTS back then? My mother is 88 and lived with POTS all of her life. She was told endless times that she needed to see a psychiatrist, and every time she did they told her there was nothing wrong with her mind. Cardiologists would tell her that her fast HR, high BP and "Fainting Spells" were due to her being the mother of 5 unruly kids and kept sending her for a Respite. It wasn't until she was well in her 60's that a very good physician figured things out and started her on low doses of the right meds, and today she does well except for flares. SHE is my hero!!!! ( Except for the fact that my sisters and I as well as our kids inherited POTS from her 😭!

You know - I have wondered the same. Up until a few years ago there was such a thing as "post-viral malaise" - maybe that is considered dysautonomia now?

Hello @MTRJ75 - I am so sorry you are having a rough time. I too am experiencing a flare right now, and I have found out that for many of us Fall and Spring are really bad seasons due to the change in weather and barometric pressure changes. Top that with allergens in the air ( currently leaves etc ) and VOILA - POTSies everywhere are flaring! You mention food and exercise are really hard for you right now and from my own experience there is only one way to stop that: stop exercising and avoid large meals. Whenever POTS makes exercise difficult we have to listen to our bodies and give in. Although exercise is an essential necessity to combat POTS - in a flare it can worsen symptoms. I have found that stopping exercise completely and then slowly re-introducing it when the flare is over shortens the episode. Unfortunately this is like taking a step forward and 2 steps back - every flare requires slow reconditioning after it's over, however well we could tolerate exercise before!!! When in a flare ample rest is usually recommended, interrupted with mild activity between. This regimen helps me get through it. Eating small, nutritional snacks ( like protein bars, a boiled egg, cereal or fruit/veggies ) every 2 hours and avoiding large meals cuts down the symptoms of a flare for me. Large meals in general are not recommended for POTS patients. I hope you get to feeling better again soon!

Dear @gatsby - I get IV fluids at home through a port. IV fluids used for POTS are either Normal Saline or Lactated Ringer's Solution ( a mix of electrolytes and Saline ). In POTS they are used either to correct underlying low blood volume or prevent the sympathetic NS from overcompensating with excessive vasoconstriction. IV fluids are a known yet not always accepted treatment of some POTS symptoms, and they are not commonly used in all countries. I know that for example the UK does not use them for POTS ( based on posts from readers of this forum ). I am not sure what the rules are in France or Japan, but here in the US you can get them in infusion centers or certain clinics with an order from your GP. My sisters in Germany ( who also have POTS ) get them through their GP in his office. In my case they were the only treatment to help with my severe symptoms, so my doctors agreed to an implanted port and I have a nurse come to my house to take care of the port. ( Implanted ports for IV fluids are a very controversial subject here in the US ). In general POTS patients are recommended to drink A LOT of fluids to stay hydrated, along with increased salt intake. That alone can help in many cases. In a few cases drinking is not enough and IV fluids become an option. For now I would try increasing fluid and salt intake and see if you can get a TTT in France. There may be cardiologists in France that are knowledgeable in dysautonomia and how to treat it. ( See our ohysician list under the physician tab on this web site ).

Hello @aec8857- welcome to the forum!!! I get IV fluids at home, I have a port and a nurse comes to change the needle once a week. I was in a similar situation as you - I also take seizures from POTS and used to be in the hospital or the ER every 6-8 weeks to get IV fluids. It is the only thing that can prevent the seizures. I used to get so bad that I had to crawl b/c if I stood up I would either faint or have a seizure, I could not find words, was extremely nauseated, my HR and BP were either too high or too low .... As soon as I got some IV fluids in me I was a changed person. My PCP and my autonomic specialist and my cardiologist were all aware of this and ordered IV fluids on an as needed basis, Then I would get them weekly at an infusion center 1 hour away but this ended up a problem b/c I needed them over several hours. I had begged my doctors for years for a port and homeinfusions but they did not want the responsibility of the possible risks ( blood clots and sepsis ). But then there were a few times when my PCP was not available and the ER docs refused fluids because they said I could drink ( they did not understand that IV fluids in POTS are more than just for dehydration ). So after that happened a few times and I had unnecessary hospitalizations for seizures and high BP my PCP finally agreed. I had a port inserted 2 years ago and get 1 l LR once to three times a week at home - and never looked back. I rarely faint anymore and only had about 5 seizures since. I do get flares and have to stay in bed at times despite the fluids but it blows over. If you have an understanding and informed physician on your team it may be a good idea to ask for an order for IV fluids on a regular basis, they not only can stop a flare but also can prevent one, as I am living proof of. Most homecare agencies require a permanent access to give the IV fluids at home, but infusion centers or even some urgent care clinics can start an IV and infuse fluids with a standing order. Getting a port for POTS is highly controversial in the medical community and certainly is reserved for severe or medication-refractory patients currently ( I was on all meds appropriate for my HPOTS diagnosis and still was severely disabled from the seizures and fainting ). I hope this helps a bit in considering what to do to get IV fluids. Yes - I had to bring it up myself and as I said - it took years to get the port approved. My sisters also need IV fluids for HPOTS regularly ( they live in Germany ) but they get the infusions in their PCP's office with a needle in the arm that gets removed after the infusion. Let me know if I can help or answer more questions - feel free to PM me. Good Luck!

Dear @gatsby- welcome to the forum, and I am so sorry you are having such a difficult time. I can relate to some of your problems and maybe this can be helpful. I take diltiazem for both HPOTS ( which causes high BP from excessive constriction of blood vessels ) and Prinz metal angina. It does help immensely with both the high BP and the angina, since it dilates the blood vessels. I am familiar with the chest pain you experience. Do you think Diltiazem (CCB) could induce POTS? No, I do not. It can CAUSE POTS like symptoms from vasodilation while you are on it but as far as I know this will go away when you stop the medication. Dizziness and orthostatic hypotension can be a side effect but not a permanent one. I From the beginning of my chest pain symptoms (last March), I keep belching all the time, and particularly when I am unwell. Do you experience this and do you have any idea what might be happening? I know that dysautonomia in general can affect the digestive system, so it is possible that it is caused by that. A gastroenterologist could test you and shed some light on that. It also could be related to H. Pylori, a stomach infection, or dietary sensitivities. If you have increased your water and salt intake to help with the POTS-like symptoms it could also cause bloating and belching. I still have chest pains, sometimes feeling like constrictions or burning, sometimes like my chest is hollow and empty. Do you think these are also POTS related? It could be - but it could also be related to the bloating. Chest pain in general is a common symptoms in POTS. First of all - beta blockers can take a few weeks before all of the side effects go away, the body needs to adjust to them. However - most POTS sufferers do not tolerate just any Beta Blocker, and you may have to try a few before you find the one that helps. I myself tried several, including Bisoprolol, but respond best to Carvelidol, which has also alpha-blocking qualities. With your symptoms and the fact that your HR rises upon standing like that POTS could be a possible cause in your case IMO. Shingles - like any viral infection - can potentially cause dysautonomia, so it could be what triggered it for you. It is good that you are going back to France for a TTT. In the mean time I would try the usual recommended treatment of increased water and salt intake as well as compression hose. You could ask your doctor to try a different beta blocker as well. I hope you will be able to tolerate the flight to France. Personally I recommend using the wheel chair assistance for transport at the airport - I would not be able to make it through the airport without it. While in the air make sure you get up regularly to exercise your leg muscles and prevent blood pooling. Best of Luck, please keep us updated on your progress!!!

@UnaOwen - I second what @KiminOrlandosaid: Antianxiety drugs, especially SSRI's and SNRI's are a common medication used for symptomsrelief in POTS, it regulates the neurotransmitter serotonin in the brain, SNRI's also regulate norepinephrine. I have been on SSRI Lexapro for many years with good effects. I also took Wellbutrin in addition for a while and did well on it but developed a skin reaction to it and had to stop. It does help also for some of the internal restlessness I feel when in al flare. I was evaluated by a neuropsychologist twice and each time she mentioned that the anxiety I feel is related to the POTS symptoms, Our symptoms are scary so naturally we get afraid when they set in and this dumps more adrenaline which makes the symptoms and the anxiety worse .... SSRI has helped me to somewhat remain in control and stay calm when the symptoms start. I also agree that you might experience a change in your symptoms, POTS will change with your natural body changes. In my case it often occured that I either needed to change the dosage of a med that I had taken for many years or add another med. If you tolerate Propanolol it may simply be an increase of the dosage, 10 mg is a quite low dosage. But adding a SSRI or SSNRI may be enough, it all depends on your body. I would trust your doctors suggestions and try. Let us know what happens!!!

Dear @cmep37 - yes, a pacemaker is not generally recommended for POTS but if your HR drops and stays that low AND you are symptomatic when it drops I think a pacemaker could very well help you. It would not help with the POTS but it would help with the bradycardia episodes. I agree with your GP that with any person with drops of HR like that it would be appropriate to consider a pacemaker. Anytime you have significant symptoms from prolonged ( and in your case recurring ) bradycardia a person should benefit from pacemaker insertion b/c it would help for the symptoms you describe, chest pain, dizziness, feeling like passing out. Here is an article that discusses indications for pacemaker considerations: https://www.ahajournals.org/doi/full/10.1161/01.cir.97.13.1325 Here are some exerpts from that article: "The term “symptomatic bradycardia” is used frequently throughout the guidelines and is defined as a documented bradyarrhythmia that is directly responsible for the development of frank syncope or near-syncope, transient dizziness or light-headedness, and confusional states resulting from cerebral hypoperfusion attributable to slow heart rate. Fatigue, exercise intolerance, and frank congestive heart failure may also result from bradycardia. These symptoms may occur at rest or with exertion. Definite correlation of symptoms with a bradyarrhythmia is a requirement to fulfill the criteria of symptomatic bradycardia. Caution should be exercised not to confuse physiological sinus bradycardia (as occurs in highly trained athletes) with pathological bradyarrhythmias." Class I: Conditions for which there is evidence and/or general agreement that a given procedure or treatment is beneficial, useful, and effective. Class II: Conditions for which there is conflicting evidence and/or a divergence of opinion about the usefulness/efficacy of a procedure or treatment. Class IIa: Weight of evidence/opinion is in favor of usefulness/efficacy. Class IIb: Usefulness/efficacy is less well established by evidence/opinion. Class III: Conditions for which there is evidence and/or general agreement that a procedure/treatment is not useful/effective and in some cases may be harmful.

What has helped me for diastolic Hypertension is calcium channel blocker Diltiazem in addition to the beta blocker. BB alone does not touch my BP, only the HR issues.

@Green48 - I too am so sorry about all your struggles! I have recently been on a 6 day course of Prednisone and tolerated weaning off from 60 mg to 10 mg over 6 days but stopping after the 10 mg triggered a full blown POTS flare. I ended up in hospital and needed to go off the steroids much slower, the shock of stopping was too much for my body. In the future we will still use steroids but taper off slower. --- I wish you the Best and hope you will feel better soon at least from the POTS!!!!

Hello @Evilclown69 - to determine whether or not you might have POTS you might want to take orthostatic HR and BP. That means you take your Pulse and BP after lying down quietly, then again after sitting up for 1 minute and then after standing for 1 minute and again after 3 minutes and after 5 minutes. If your HR goes up 30 BPM or above 120 BPM WITHOUT a significant drop in BP it most likely would be POTS. If this test shows POTS I would take it to your doctor and ask for a Tilt Table Test. This test is frequently ordered to diagnose or rule out POTS and is usually performed by a cardiologist. In most dysautonomia patients it is not necessary to exert ourselves like that in order to get a high HR - usually the simple act of just being upright is enough to trigger symptoms. However - some people with dysautonomia do tolerate some level of exercise, so i could not comment on this being a definite Yes or NO for POTS probability.

@Sushi - as far as I know EDS causes the walls of the blood vessels to be too elastic ( like your joints and cartilage, from too much collagen ) and therefore the vessels are not able to constrict properly. This in turn can trigger the ANS to try to compensate by telling the vessels to constrict by activating the sympathetic NS ( adrenaline ).

@Daryl Annand @Sushi - yes, eating a low carb diet is generally recommended to avoid postprandial dropping. Carbs use a lot for digestion and therefore the body redirects blood flow to the digestive tract. Pasta, Breads etc essentially " lay like cement " in your gut and therefore immediately need more circulation in the abdomen. Moving after eating ( if you tolerate activity ) also counteracts blood flow from going to the gut, since it is needed in the leg muscles, so a "digestive stroll" is good!!!

@weeamanda - I would trust your doctor, since your resting HR was consistantly elevated I don't think he is wrong by suspecting IST AT THIS POINT. I also personally do not think it a bad idea to admit you for Observation for further testing or try-out of meds, The best way to figure out what is going on with your HR and BP is to monitor you in hospital. Let us know what happens, and good luck!

Hello @canopysun - welcome to the forum!! Passing out - or nearly passing out - upon standing ( or other triggers ) can be neuro-cardiogenic syncope ( NCS ). This is a type of dysautonomia, I have it ( along with POTS ). If severe enough the doctor may consider driving as dangerous, but it is up to the physician. I passed out many times ( and also take seizures from POTS in addition to NCS ) and my doc does not want me to drive b/c I pass out even if sitting. You may not be considered at risk just b/c you pass out - it depends on the frequency, severity and triggers that your doc will take into consideration. If your TTT shows NCS or POTS it does not necessarily mean you will loose your license.

@Knellie - I have had gastric reflux ( heartburn ) since childhood, and it get worse during certain POTS flares. Untreated it turned into esophagitis and duodenitis for me, whcih was very bad. It took a lot of meds and dietary restrictions to get the inflammation controlled. I would see your doctor or even a gastroenterologist right away, if heartburn lasts and does not improve despite OTC meds ( you state antacids do work ) and diet changes ( avoiding all the foods that make it worse ) it should be treated with medications. It CAN be a symptom of POTS, but whatever the cause - untreated it can cause problems. Please see your doctor for this symptom!

🤣😂!!! I know what you mean!! If I get in 15 minutes of Monopoly I feel like I have superpowers!!!

@Lisa C - I am unable to work for any length of time at all and am too unreliable to follow any schedule. But my sister, who has POTS, is able to work 10 hours a day on a flexible schedule from home. She can attend meetings or talk via Zoom. The main reason she still works is so she can maintain her benefits, she currently is going through the disability process. My other sister ( also has POTS ), who has been cutting her hours and days working as a social worker in a hospital, just had a meeting with her employer and was told that she may have to take on a different, less challenging, position because of her not being able to reliably do what is outlined in her job description, mostly b/c she is so easily overstimulated. She is not able to even sit at a computer for very long, so she cannot work from home either. I find the biggest reason for not being able to work is that we are so unreliable and our abilities fluctuate from hour to hour. I may be just fine waking up but then - at some time throughout the day - it hits me like a ton of bricks and I am not even able to have a coherent conversation, let alone sit at a computer or have to make my way home. I just simply have to lie down and let it blow over - what employer can accomodate THAT?

Thank you for sharing @MTRJ75. Yes, it is a known fact that cerebral hypoperfusion causes many POTS symptoms, including those of CFS. It can be caused by constricted vessels not letting blood reach the brain ( like in HPOTS or when caused by overactive sympathetic response ) or by dilated vessels not letting the blood reach the brain. The drug phenylephrine is mentioned in the article - antihistamines in general CAN help SOME POTS sufferers. I have HPOTS and suffer from both hyper- and hypotension caused by abnormal dilation/constriction of blood vessels. I have noted that when I have allergies ( like right now since the ragweed is blooming ) my BP runs low and I have more presyncopal symptoms. This is mostly due to the fact that histamine is a vasodilator, therefore antihistamines can help ( I take Claritin ), despite the fact that I normally suffer from vasoconstriction and hypertension. I find it very interesting to read a theory explaining the breathing issues that come with POTS. I have times when I seem to not be able to catch my breath, often accompanied by chest pain. I was told by my cardiologist ( and also have read online ) that in POTS this is frequently caused by circulation changes in the chest. So reading how it can correlate with CO2 levels is very interesting. Again - thanks for sharing!!!!

@Viktor - it is common to get overstimulated easily when you have POTS. Exciting movies, loud music, flashing images etc - all known to cause overstimulation and therefore can trigger symptoms. The only way I personally am aware of to stop this is by avoiding the stimuli, meaning you probably shouldn't watch gory movies when you know your ANS cannot handle them.

Many of us seem to experience either weight gain ( often from inability to exercise ) or weight loss ( from constant overstimulation etc ) from POTS. What is your experience? In my case I have weight gain when in the fatigue/low exercise tolerance/low metabolism phase and weight loss when in the overstimulation/high adrenaline/restlessness phase.

Hello @Minny - welcome to the forum 😊! --- Being underweight can cause syncope, low BP, high HR etc. With the abdominal pain and nausea it could be something with your GI tract. Do you suffer from POTS? Have you seen a gastroenterologist? Chest pain and shortness of breath CAN be caused by GI issues as well, i know b/c I am a lifelong sufferer of GI problems. I assume since you were in the hospital they checked your blood work - anything standing out? --- I would definitely see your physician about these issues.

@KiminOrlando - how do you know the salt is not staying in your body - is it from peeing it out? -- I too had the problem that a high-salt diet and lots of fluids went right through me, I had minimal effect from them. That is why I am now on IV fluids - a huge difference from high salt/ high water diet!

Hello @Viktor - here is a video that explains how to take orthostatic vital signs. Usually it is the rise of BP from lying to standing ( but need to take sitting as well ), so you would note the increase when standing. https://www.bing.com/videos/search?q=how+to+take+orthostatic+vitals&docid=608033112828086457&mid=79524DB15336D7B5D79D79524DB15336D7B5D79D&view=detail&FORM=VIRE