Pistol

??? What in the … 😝😶🤔😬🥴😲😩😖 …. !

With all of the depressing news I want to share a victory story: recently I spent a few days on the ocean. Due to POTS I had to stay inside in the air-condition and could only venture outside in the cooler am or after sunset. On the second day I had to get IV fluids and after that felt much better. So I mentioned to my family that I felt so good that I wished I could go out in the ocean, which was promptly countered by my teenage daughter with " Yeah right - you would never last, you're too frail". Well - wrong thing to say to a stubborn German. I had not even brought a bathing suit so I threw on a pair of shorts and my husbands T-shirt, said : "I'll show you frail" and down the beach I went. No one else was in the water since it was a cooler day and the waves were rough and cold. Down the dunes, over the beach and straight into the sea I went, the cold waves hitting me so hard it took my breath away. But I stayed at least one minute, went in up to my chest and back out. I felt so invigorated and victorious!!! I had expected a big time flare after that but strangely I felt better ever since ( not sure if that is due to the cold water or the " I'll show you" attitude. ) I came out so happy and satisfied as if I had just regained my vision. So, to anyone who thinks we are frail: we are stronger and braver than you ANY day of the week, even if we only last one minute on something you take for granted!!!!!!!!!!!!

@autonomicreg - Sushi is right, it is recommended to get properly measured so you have the right size. Usually thigh high is recommended for POTS - better yet waist high!!!! Measuring Guide for Sizing of Compression Stockings Measuring your legs for compression stockings, support socks, support hose, and gradient compression hosiery:. For knee-highs: measure around your ankle and calf. Then, measure the distance from the floor to the back of your knee. For thigh-high and pantyhose: measure around your ankle, calf, and upper thigh. Then, measure the distance from the floor to your upper thigh (bottom of your buttocks). ANKLE Measure around the ankle at the narrowest point, generally above the ankle bone. CALF Measure around the calf muscle at the widest part. LENGTH Measure from the floor to the bend behind the knee. THIGH Measure around the thigh approx. 3" below the gluteal fold (crease of buttocks). THIGH LENGTH Measure the distance from the bottom of your buttocks to the floor.

I would like to add that it is very important to check with your doctor or pharmacist before introducing any herbs or supplements IF YOU ARE ON MEDICATIONS FOR DYSAUTONOMIA. Many supplements are known to interact with certain medications - which is especially important to us, since we are often highly medication sensitive. I get some herbal supplemets from my chiropractor and she has the supplement company she works for research if the particular supplement can be taken with my medications and - more importantly - with dysautonomia in general. Some supplements I cannot take. And once a supplement is recommended by them I check with my pharmacist, who reviews all of my meds and lets me know if there are any potential interactions. For example I cannot take Hawthorne and Black Kohosh due to my diagnosis of HPOTS and interactions with my medicines.

@RobinB - that is great!!! If there was one close to me I would totally give it a try, I can see how this could relax the ANS and help with our symptoms - please let us know how you do with it!!!!

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!!!!!