Pistol

Hello @Lisa C - I am sorry you are so unwell. The nightmares and high heart rate during the night could be from elevated norepinephrine ( adrenaline ) levels. This used to happen to me, I have HPOTS. In my case this happened because my adrenaline levels did not go down during sleep as they do for normal people. After about 3 hours the levels are supposed to drop to allow deep sleep, if they don't we either wake up or have light, restless sleep - nightmares and tachycardia can be a symptom of that. Feeling worse in the mornings is also typical for that - your body did not regenerate with restful sleep, therefore getting up is very stressful and can trigger our symptoms. About the tachycardia - do you have a wrist watch that displays your HR? If not maybe you could count your pulse when this is happening. Otherwise maybe you can ask your doctor about a halter monitor? Also - what meds are you taking for your POTS? It could be that you might benefit from a beta blocker or possibly an increase of any meds you are taking? Have you mentioned any of this to your doctor? -- It could be a flare, which commonly happens to me during the warmer months of the year. Avoiding sun, extra fluids and salt and wearing compression hose can help, otherwise rest in a cool house, eating 6 small snacks rather than big meals and scheduled but very mild supine exercises to strengthen core abs and legs can help. I wish I could give you better advise but at this time I guess it would be important to rule out recurring SVT and - if that is ruled out - consider a POTS flare. That means simply doing the above things and waiting it out ( I know how frustrating and depressing that is ). Best of luck 😗!!!!!!!! Please let us know how you are getting along.

@autonomicreg - compression stockings help by creating compression to your blood vessels and muscles in your legs, therefore aiding in preventing dilation which is what triggers the attempt by the ANS to pump blood back up your body. So it helps by constricting the vessels from the outside and helping the muscles to pump the blood back up. This is not something your body can re-learn how to do - unless you are lucky and have a form of POTS that improves after a while. You are right - you will need to wear them for as long as you have POTS, but they are not a band-aid to cover up the symptoms, rather a treatment. Well - I don't believe your body becomes dependent on them but rather will go back to how it is without wearing them. Kind of like a tomato stake. As long as it is there it will hold up your tomato plant, but as soon as you remove it the plant will collapse. It will not learn to stand up on its own because of the stake - but it can as long as it is there. ( Sorry for the poor comparison ). 😬

@RobinB - you should take your BP seated and relaxed when you take it, unless you are taking orthostatic VS.

I believe ( my personal theory only, not actual medical information ) that it might be possible. Since all POTS is based on a part of the ANS not functioning properly - sympathetic overcompensation or parasympathetic withdrawal, for example - it should be possible that the dysfunction can change to a different compensatory mechanism. I have never read anything about POTS changing, but I know that mine did change insofar that my syncopal episodes turned into seizures eventually. I used to pass out when the ANS caused a sudden DROP in BP, and that changed to seizures b/c my BP started to rise suddenly instead of dropping. Therefore I think that the dysfunction can change from one mechanism to another.

Well - I have found the barometric pressure to definitely be a cause. I have been feeling very well in my home at 2500 feel elevation in the Appalachian mountains. The spring temps helped a lot in being able to get around and feel almost normal. I was doing so well that I agreed to go on short trip to the ocean with my family. Long story short - as soon as I got out of the car after a 7 hour drive POTS came back full force: palpitations, cold hands and feet, inability to be up for long, fatigue, diarrhea … I had to stay in the airconditioned room all day and only could venture out in early mornings and after sun set. Thank god I have a port and brought my IV stuff with me. The second day I gave myself a liter of fluids and felt much better, even able to stroll briefly on the beach. So - this is just simply proof for me that even after a very long good spell we are not really over anything - with the right meds, staying within our limitations and avoiding triggers we can manage - but as soon as we venture off it's back to square one!!!! However - I would like to add that without fluids handy I would not have been able to go at all - and it is very important to my family to make vacation memories with me. So I am grateful for the port and the ability to have fluids available anytime I need them. So sad that IV fluids are still not a known go-to fix for acute flares. A port is not needed unless they are given weekly or daily, so everyone should just be able to walk into a clinic or ER, mention POTS and get a bag.

@RobinB - no, it is not dangerous. But as with ANY drugs ( even Tylenol, Benadryl or even cough drops ) we can have a reaction to them. Sometimes this could be caused by genetic abnormalities, sometimes allergies and other times an underlying condition we are not aware of. EVERYONE runs that risk EVERYTIME we try a new med. But if we NEED a medication and do not try because we are too afraid - then how will we get better? Anytime a physician orders a med it could potentially cause some unwanted effect. I think @sushi means that if we get this genetic testing done we will know what meds would cause us difficulty.

Oh @RobinB - you sound exactly like I used to feel! I too had this since my daughter was born, but I did not get to the breaking point until she was 4 years old. I ended up passing out and taking seizures all of the time and eventually had to stop working ( I was a nurse for 23 years and having to stop tore my heart out! ) I felt useless and " a waste of human energy " b/c not only was I disabled but I could not even play with my daughter or keep house! I became very depressed. After experiencing all of the stages of grief I eventually arrived at acceptance. You can learn more about my story here And no - you are not ranting. This is what POTS looks like, you are going exactly through what we all experience at some point - and it is good and healthy to talk about it. And just a tip: pushing through is not a good idea. We all do it but I am an example how we can make POTS much, much worse by not listening to our bodies, by ignoring the symptoms and by rejecting our limitations. Had I not thought that this will eventually stop, that I just needed to keep going and that "the next pill will be the one that fixes everything" … I would have not gotten as bad as I was. And I do not wish that for you, so I want to stress to you that it is EXTREMELY important to limit yourself to the bit you can do right now. As @Chuske said: we need rest. As long as we keep trying to live a normal life and push through our symptoms we will not improve. It is rest and carefully balanced exercise to tolerance along with all of the self-help measures like increasing water and salt and wearing compression hose that ( in addition to medications ) can improve your quality of life.

@RobinB - I would give it a good few weeks before you start being more active. This is for two reasons: just because your HR might improve does not mean your exercise intolerance will too. HR is just ONE symptoms, and exercise usually triggers all of the others like fatigue, anxiety, irritability, dizziness etc. These will still occur even if your HR improves, so imcreasing activity slowly is very important. --- The second reason is that if you see your HR is more stable and you start being more active it might set off your POTS - and then you think the Metoprolol is not working. The perfect scenario is this: start the med and do everything as usual, don't increase your activity level initially ( you may not feel like it anyway due to the tiredness ). Then after a few weeks, if you feel improved - start doing a little mild exercise. And if you don't feel any different your doctor might increase the dosage until it works. Or you may need a different med. In my case I started with Metoprolol and then tried numerous other, completely different meds until I found the ones that work for me. Remember - the princess kissed the frog before she found her prince!!! I hope you will find metoprolol helpful, may people do. Good luck - keep us posted and give it some time!!!

@RobinB - metoprolol is a beta blocker commonly used as first med to control tachycardia in POTS. Some people it helps, some it does not. Warning though: it is very common that it will make you tired for the first few weeks. That is normal for beta blockers and in most cases this improves after the first few weeks. Just a heads up. I also used to have periods of low HR in the 50's but when I took Metoprolol it did not seem to make this worse. In my case metoprolol did not help since I have HPOTS and also have high BP with the tachycardia. However, I respond very well to Carvelidol, a beta blocker that also has apha-blocking properties. Don't be scared to try it - the low dose should be fine. They often suggest that if it makes you tired to only take it in the pm - maybe if you get too sleepy initially you could ask your cardiologist about this. But - as I said - in most cases the tiredness goes away.

@Ellievb06 - Lexapro takes about 6 weeks before it starts working, so the feeling dizzy is most likely not related. But you should ask your doctor.

It is OK - and even healthy - to get your HR up with exercise. It is good for maintaining proper circulation and a normal BP. However in POTS we run tachycardia by doing nothing, and it can stay elevated for as long as we are upright. In my case ( I had many heart monitors in my bad years ) I would run 120's all the way up to 150's FOR HOURS while at work, b/c I pushed through. I had high BP at the same time. That is why I ended up with POTS getting so bad that I take seizures. I did not develop any heart problems from that, neither did I end up with problems from the extreme high BP's, but I contribute that to the fact that I was otherwise very healthy.

@RobinB - this is also normal for POTS. Medication sensitivity is a symptom, and most patients have reactions to some meds when they first try them. I had to stop several after starting them, and I too am very anxious about trying new one's. But I have learned that if I want to get better I have to try. Thankfully we found the right combo and today I am much improved. However if you got better without meds before it hopefully will happen again.

@Chuske - what you are experiencing sounds like HPOTS flare to me. The strong but normal heart beat can be caused by narrow pulse pressure, this happens to me with diastolic hypertension (high pressure when heart tries to relax and refills between beats ), it often happens with high adrenaline ( in the Fight-or-Flight response ). The bloating and stomach cramps also can be caused by high adrenaline, since the blood from the digestive tract gets transported to brain, heart and lungs during Fight-or-Flight. So does the anxiety come with high adrenaline ( I describe it more as an internal restlessness that causes anxiety ). Sleep disturbances are common with high adrenaline levels. If you get diagnosed with HPOTS ( or at least with adrenaline surges ) vasodilators like calcium channel blockers can help. I believe MCAS causes more vasodilation since histamine is a vasodilator and antihistamines are vasoconstrictors ( someone please correct me if I'm wrong ). If your symptoms are caused by HPOTS then counteracting vasoconstriction can help (for me vasodilator meds and IV fluids, which are also vasodilating in action, were essential in improving the flares ). https://www.dinet.org/info/pots/hyperadrenergic-pots-hyperpots-an-overview-of-a-pots-subtype-r220/

@RobinB - could itbe possible that you were dehydrated? This could cause an episode like that for someone with POTS. I find that odd - you simply run around with a HR of 140 and the usual symptoms, and no one ever suggested even a beta blocker to you??? How do you function like that??? No wonder it is getting worse!!!! There is a lot that can be done, but it takes a while to find out what works for you. IV fluids are probably premature in your case, since you have not tried medications yet. Good that you are trying to get into mayo, I am sure they will try something. Do you increase salt and water intake ( highly recommended for most POTS types )or wear support stockings? These self-help treamtnets are proven to be effective in most cases and can helps bring down your HR. Here is a web site that lists the most common treatments for POTS. https://www.dinet.org/info/pots/pots-what-helps-r100/

@RobinB - although I have a very good autonomic specialist my PCP and local cardiologist do most of the footwork. We work together as a team and only refer to the specialist if we are stuck. What helped me mostly medication wise is Carvelidol ( beta blocker with alpha-blocking qualities as well ) and Diltiazem ( calcium channel blocker to keep blood vessels dilated to prevent the episodes ). When I get flares I used to get IV fluids - they stop the episode immediately and also prevent them. I used to have a prescription for 1 l NSS over 4 hours as needed and would get them at an infusion center. It works like a charm, and IV fluids are a known and quite common treatment for POTS flares. I personally have a port now and get them weekly to prevent seizures, and have only had 2 seizures since, and both of them in surgery. Here are a few articles and posts about this - known but often overlooked - treatment. https://pubmed.ncbi.nlm.nih.gov/28185102/ https://santamariamedicine.com/2016/06/01/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/ https://www.change.org/p/medical-community-make-intravenous-fluids-a-standard-treatment-for-dysautonomia

@Chuske - when I was at my worst with insomnia from POTS I was on the following regimen: 25 mg Benadryl night 1, 0.5 mg Lorazepam night 2, 1/2 of Flexeril 10 mg night 3. Night 4 I would not take anything. This helped quite a bit. Today, if I don't sleep for 2 nights, I take Lorazepam. My doc ordered it as needed, and it does help.

Hi @MFRep - yes, I know what you mean. As long as I am in a good spell I can do a lot inside, but if It is hot outside I can't even sit in the shade without breaking into a cold sweat, clammy skin and ice-cold hands and feet. 5 minutes of it and I am done for the day, I mean bedrest-done. The sun and heat make me feel totally wiped out, as if I climbed mount Everest.

@RobinB - yes, I have these episodes that you describe, I have hyperPOTS. I used to get them frequently, and in my case they usually lead to autonomic seizures. I would get shaky, heart racing ( 150's ), BP 160's/110's with left sided chest pain radiating into my neck, sometimes fingers numb. Hands and feet would get ice cold. If I did not - or could not - lie down I would either end up fainting or have what appears to be a grand-mal seizure, has been proven to be autonomic in nature though. These events have been often caught on monitors and even on EEG. In my case they are caused by a sudden and severe dumping of norepinephrine ( adrenaline ) into the blood stream, sort of like shock. I agree with what others have said - definitely check with your treating physician tomorrow and describe the event and Vital signs. When I started having these episodes they ordered all types of tests, which led to my diagnosis. It could be something else potentially, that is why they need to investigate. It is certainly not common, so they may initially look for other reasons - and they should. Hopefully this was an isolated incident and will not repeat itself. I know how scary it is, especially when you don't know what is happening. I taught my then 4 year old daughter to dial 911 if I "went to sleep on the floor and have funny dreams like the dog".

I second @Chuske about the ginger tea and fennel seeds for bloating and indigestion from IBS. I also have found the combination of Turmeric and Black Pepper ( increases the concentration of anti-inflammatory substances of Turmeric in blood ) very helpful for chronic pain such as generalized joint pains. It works as good - if not better - than NSAIDS for me, without the side effects.

@issie - thanks for the artile on neuroinflammation from fight-or-flight. I have HPOTS and suffer from unexplained generalized joint pains. This started shortly after the beginning of my dysautonomia started and I have been told that it must be due to HPOTS. I never understood this and subsequently went through complete rheumatology work-up ( al AI labs negative for many years ) - nothing was found abnormal. The study explains a possible reason for the joint pains and answers a lot of questions about a possible connection between my diagnosis of POTS and the symptom of joint pain in my case. Unfortunately they do not have a treatment yet, so I am stuck with NSAIDS or steroids. Thanks again for sharing!!!!!

Hello @Qwerty12 - welcome to the forum. Of course - the physician conducting the TT is the One who will diagnose you based on the findings of your TTT. I had two TTT's and the first one was positive for Neuro-cardiogenic Syncope ( NCS ), the second one for POTS. In the first TTT my HR increased and then both BP and HR plummeted and I passed out. In a TTT - I was told - syncope and pre-syncope count equally positive, so based on your response and symptoms it could be NCS ( a form of dysautonomia ). What was the reason for the TTT? Do you faint or feel faint often? Here is a link from our website on more information on NCS:

Thanks, @p8d and @KiminOrlando. No - they have tested all of labs several times over the years and I even had a complete rheumatologist work-up last year. The only thing that is always elevated is my ESR. -- I have an appointment with ortho coming up, I will ask about hydroxychloroquine. Thanks for mentioning it!!!! Best wishes - Susanne

I am considering taking low dose steroids for generalized joint pain unrelieved by NSAIDS. Since I have HPOTS with hypertension ( currently controlled ) I am not supposed to take high doses of steroids. My question is: Has anyone with HPOTS taken steroids and how did you tolerate them? what dosage did you take? Thanks in advance for any replies 😊

Possibly because he does not know hoe dysautonomia works? My urologist does not have a clue and always asks me or my PCP before ordering a med for my IC b/c he knows nothing about POTS. I really prefer that in a physician - I do not expect every one to be an expert, but the least they can do is admit it!!!

@Starrynight - I am glad that you found some answers, although I wish they were better news!!! Thankfully AT ( or SVT ) can be treated with medication or ablation, and your EP ( the cardiologist you were referred to ) will know what to do. And the best news is ( drum roll ) - you may not have dysautonomia 🥳!!! But keep in mind that the symptoms you describe CAN be from POTS, and your EP may not be confident in considering this as a secondary diagnosis. Symptoms of AT are close to those of POTS, except that they do not necessarily include orthostatic intolerance, which you describe. I know of several people who have both - POTS and SVT. I hope you find a knowledgeable and compassionate specialist and please keep us posted on your progress!!!!! Here is a list of symptoms of AT: Atrial tachycardia may cause the following symptoms: Chest pressure or pain Fainting, also known as syncope, or near-syncope Fatigue Lightheadedness or dizziness Palpitations, which can be skipping, fluttering or pounding in the chest Shortness of breath It is important to note that some children may not know how to describe what they are feeling during a period of atrial tachycardia. They may have trouble keeping up with other children or realize they are having "spells" and want to sit