Pistol

@CallieAndToby22 - since all other measures have failed for the IC - have you ever considered the nerve stimulator that gets implanted in the bladder? I think they do that in cases that do not respond to medical treatment and are considered severe.

Dear @Sandy DiVa - I am sorry you are this unwell. Several things stuck out to me: first of all - there is not "normal POTS". There are several different types of POTS and they all have some symptoms in common and others symptoms are unique to that type. The symptoms you describe sound pretty typical. What medications do you take for POTS? You mention your BP going up when you stand - often this can occur from lack of exercise, especially in POTS patients. Certain medications can cause this too. In POTS our BP can go up as a result of the ANS trying to compensate for a sudden drop in BP. What you may want to do is purchase a BP monitor and measure your BP several times each day and write it down, so you can show it to your doctor. I also am disabled from POTS and understand how a vague diagnosis can minimize your options when it comes to SSDI. But here are a few things you can do to attempt to control your symptoms: establish a routine consisting of a balance of rest and exercise. Being inactive ( even if you feel bad when active ) is proven to make POTS much, much worse. I always do exercises, even when I am in flare an bedridden, you can do leg raises and crunches and other exercises while lying down. Get up and stand every 30 minutes, even if only for a minute. Do a bit more every day - but rest in between. I use a cheap rowing machine and it really is a good exercise since it moves the whole body. There are exercises that are good for POTS - here is a link Dysautonomia International: Exercises for Dysautonomia Patients Exercise also helps with sleep, and it usually helps with the rise or drop in BP upon standing, brain fog ( b/c you increase circulation to the brain when exercising ) Of course the usual treatments of increased salt and fluid and wearing compression hose are recommended. Do you see an autonomic specialist? If all the above mentioned tips don;t help you may need a change in medication. You also might be on same meds that make your POTS worse, so discuss all of your meds with your doctor. In the meantime - get up and be active as much as possible!!!!!

Hello @Sandy DiVa - the search link is on the very top right of this site. I have not ever heard of Opiates being used in the treatment of dysautonomia. It is possible that the fact that it eases your pain may also ease your POTS symptoms. Personally I would not take them regularly or long term b/c - as you mentioned - withdrawal could very likely trigger your POTS. The half-life of a medication is the time it takes for the amount of drug in your system to be halfed through metabolism. So - if you take 10 mg and the half life is 3 hours that means after 3 hours you only have 5 mg in your system. That is most likely why you have withdrawal symptoms after 3 hours. I would be very concerned about addiction at this point and it might be a good idea to discuss the symptoms your are experiencing with your doctor. Often switching to a different pain med prevents the dependency. It is also possible that the dependency causes a psychological improvement of symptoms. The fact that your BP goes up and you develop palpitations and sweating can all be from withdrawal as well as POTS, so you should bring this up to your doctor. Good luck!

@Sandy DiVa @Knellie I have an order from my GP for the IV fluids. I used to have a Standing order for 1-2 liters of IV NSS ( saline solution ) weekly as needed and got them at an infusion center ( 1 hour drive one way ). That helped when I was in a flare but did nothing to prevent it ( I take autonomic seizures from HPOTS ). I still ended up in hospital for IV fluids every 6-8 weeks for several years. Eventually my GP agreed to an infusion port so I could get the infusions at home ( since I am considered homebound ). Now a nurse comes once a week to change the needle in the port and I can infuse up to 3 liters a week, depending on how I feel. Here in the US IV fluids are a known effective treatment for POTS but the port is controversial since it has potential risks, like blood clots and infection. I have had it for over 2 years and am so much better. I hardly ever pass out or have seizures ( only if I am ill ), and am a lot more active than I used to be. I know of many POTS patients who have an order for IV fluids on an as needed basis, and it really helps when in a flare, ill or symptoms are worse for any reason at all. However - the more realistic approach is to drink a lot of fluids and increase salt. I was not able to drink as much as I should due to GI issues, and what I did drink I peed out right away, so the oral fluid never did anything for me.

@Scout - I am sorry you are having such a bad flare! Since you live in Australia and it is summer there now - it might be the heat. Most of us have a bad time in the summer. I have HPOTS and my BP soars when in a flare, so I have found relief from avoiding heat ( I only go outside in the am or pm when it is hot ), and I get weekly IV fluids - which has helped more than any meds for the high BP and ALL other symptoms. Of course - ample salt and fluids as well as compression hose. In the way of medications: beta blockers are the go-to first medication but not all of them work for everyone. For me I have made great results with an alpha-and -beta blocker ( Carvelidol ) as well as a calcium channel blocker ( Diltiazem ) to control my high BP. Some people tolerate the alpha blocker Clonidine, however many people have reported intolerance to it, including myself. Another medication that has helped me immensely ( and was prescribed by my autonomic specialist ) is guanfacine. Originally used for ADD it also lowers BP. For me it has helped with BOTH hypertension and concentration ( which most of us lack also ☹️ ). Unfortunately meds are trial-and-error for us since not one single med works for everyone. So I would be brave and experiment with the help of your doctor. I had to try many, many meds over the years and had to kiss many frogs, but in the end it was the only way to find what works for me. Also - I have to stress the importance of rest and exercise during a flare. It is important to establish a routine during those bad times. Don't stay in bed all day ( despite the fact that that is the safest place for us ) but rest up and then get up and move around or do some light reclined exercises if tolerated, without pushing yourself too hard. I do leg exercises in bed but also get up every 30 minutes and move around, and go outside for fresh air when the temps allow it. I hope you will get better soon, and let us know what you and your PCP decided on ! Good Luck!

@Sarah Tee write @ and then start typing the members name . A menu of names will appear, click on the members name and hit enter. If the name is highlighted in blue it will alert the member that you mentioned his/her name.

@Sarah Tee here is are two articles about hydration and drinking boluses - maybe they are interesting to you? Role & Importance of Hydration in POTS • MyHeart POTS Treatment: Scientifically & Medically Proven • MyHeart

Oh @Nin - only the people on this forum will understand why you would prefer to have COVID rather than a POTS flare! I too used to get so scared that it is getting worse every time I had a flare. And every time I had a few good days I thought I was cured - just to get soo disappointed when POTS came back!!! I know exactly what you mean. I am glad you recovered relatively fast and well, and I hope you did not flare too badly?

@Sarah Tee Increasing fluids only works if also increasing the salt. The salt helps to keep the water in the blood vessels. The reason for hypovolemia in POTS is a bit muddled, since some people don't actually have low volume per se but their ANS ACTS as if they did. I know, it's complicated 😕! In my personal case ( I have HPOTS ) my ANS reacts to triggers by constricting the vessels, resulting in tachycardia, high BP, cold hands and feet, chills, tremors, brain fog etc - essentially all symptoms of going into shock. Drinking fluids and increasing salt has never helped me, I just pee it all right out ( increased urination is a symptom of fight-or-flight, hence we pee ourselves when scared ). But getting IV fluids, especially Lactated Ringer solution ( which has other minerals other than just sodium chloride ) helps to increase the volume in the blood vessels and keep it there, which as a result creates a steady pressure within the vessels and that stops the ANS from constricting them. This instantly brings down my BP and HR - which is weird, because in people with a normal ANS IV fluids would INCREASE the BP. As you see - POTS is complicated, which is the reason so many doctors don't get it. It goes against everything they were ever taught, and against how they have explained certain symptoms.

For me the combination of both meds was the answer - just beta blocker was not enough. What does your doc think about doing both?

@flowntheloop -beautiful - you are so very talented!

@RecipeForDisaster - diltiazem will not help for HR or palpitations because it is a calcium channel blockers, where as Metoprolol is a beat blocker and works on those receptors that influence HR and irritability of the heart. I am not sure what would help in your case, since vasodilators are not given to people with chronic hypotension. Since you respond well to IV fluids - have you ever spoken to your doctor about getting them regularly? They are very effective, and might prevent the constriction in your brain as well as improve your low BP. Often doctors order a trial of one or two liters a week for 1 month, to see how you are doing with them. If they work well and once you stop them again you go back to feeling worse your doc may consider you getting them long term. Do you think your doc would be receptive to that?

I also want to wish you all a very merry Christmas, and let's all hope for a much better new year!

@RecipeForDisaster - if your BP is constantly low you probably do not suffer from excessive vasoconstriction but rather from vasodilation. Commonly the vasoconstriction happens when your ANS tries to compensate for the low BP by excessive sympathetic activation - which in turn can cause too much vasoconstriction that cuts off your blood supply to the brain - but usually also increases the BP. When people have consistently low BP the vessels are too dilated, therefore Diltiazem would not work for you. I take a beta blocker and Diltiazem ( a calcium channel blocker ) and it has helped immensely for my hypertension and tachycardia. It ( Diltiazem ) has also improved the cardiac spasms resulting in chest pain and somewhat for the Raynauds ( vasospasms in the feet ). However - since you have low BP it actually is most likely making that worse for you. Do you EVER get high BP?

I am the same as all of you @flowntheloop @Knellie @RecipeForDisaster - winters are better in general but I cannot go outside unless for brief periods b/c of Raynauds in my feet and in the summer I suffer terribly from heat and can only be outside early in the morning or later in the pm. I faint a lot more in the summer!

@Ashc - thanks so much for the link, I am sure it is helpful for many of us. Nope - herbs are essentially weeds, so they are quite forgiving. I am looking forward to hear from you when you are ready to give them a go!!!!! 👍

I DID IT AGAIN! Woke up to a foot of fluffy white snow this morning and went sledding with the family! Granted - I only could go for one run and they had to pull me back up the mountain but IT WAS AWESOME! And watching them and the dog having fun was an equally joyful memory I downloaded on my hard drive!!!! To last for the rest of the winter b/c I am going to be down for a while. Sooo worth it!

@flowntheloop - yes, this happens to me. I have HPOTS, and when my adrenaline is high all my vessels constrict and there is no circulation to the brain. When it starts I develop slurred speech, slow thinking and other symptoms. This used to lead to seizures but since I am adjusted with meds and IV fluids this rarely occurs anymore. But if I am in a bad flare the slurred speech still happens. I am on a calcium channel blocker, which promotes vasodilation, and the IV fluids prevent vasoconstriction.

@Sarah Tee - many people on this forum do well doing a water bolus first thing in the morning. The next time you might try salty broth, it tastes good and is not as harsh on the stomach. I too feel good some days and then I do too much and the next week or longer I pay for it. It is important to pace yourself on good days, still follow a rest-and-exercise ( or chore ) routine even when feeling well.

@dancer65 - I will send a PM

@Cmama - I just looked up Laryngospasm and it states the causes are allergies, asthma, GERD, stress, irritants and anxiety - and it commonly wakes people up from sleep. Sounds like that is what your son is experiencing. Since he does not have GERD and is not allergic - could there be any irritants in your home - smoke, mold, fumes etc? It is not a known symptom of POTS, so it must be unrelated. The thing I would be concerned about is giving him epinephrine when he has POTS, but of course if it helps his spasms he obviously needs it. Have they ever considered and SSRI or SBRI? It is commonly used for POTS and also could help for the anxiety that naturally occurs due to the spasms.

@Scout dysautonomia does not pose a greater risk from COVID - we simply may be sicker due to flare symptoms. So there should not be any complications per se - it will just cause a full on flare. Hope your test is negative and your symptoms will be brief 🥰

@cmep37 - I believe it actually could PREVENT your joints from moving abnormally because you move differently under a weighted blanket.

I live on the WV / VA border and about 1 hour away is a resort called The Homestead. It is a historic Spa built over a hot spring and has a huge hot spring pool. It also has an ice skating rink and many other amenities. If I could afford it I would float in that huge, historic, glass lined pool and then ... go to bed and order room service!

@Derek1987 - I am personally very familiar with ER's and the ignorance of ER docs when it comes to all things POTS. Nothing we experience is considered an emergency ( even passing out and seizures in my case, even fluctuating BP's and tachycardia with runs of PVC,s, even chest pain and tremors ) and all they want is to get us out of there to make room for " real patients " - which you WERE in need of emergency care, and you were not there for POTS. But in their defense: they are very overworked and over run with COVID in addition to all regularly occurring emergencies, hence the insanely long wait time. And the attitude - well, they ARE humans! As a former nurse I can tell you that it is not necessary to be rude to patients due to stress - but as a human being I understand it. There are exercises that rob us of energy and others that GIVE us energy. I have found a rowing machine ( I bought it pretty cheap from Amazon, $ 80 ) is the best thing for me, since I do it sitting down and exercise the whole body at once. It also has 8 settings, so I can adjust it to my tolerance. Currently I can do 22 reps on the second setting, but whenever I have a flare I have to start lower again. Many people like a reclined bike. My sister, who also has dysautonomia, does excellent on an e-bike, she used it daily in the fall and her BP and overall wellbeing improved remarkably!!! She is very exercise intolerant as well and has found many exercises to be too stimulating for her.