Pistol

@aec8857 - I have a port for IV fluids and keep it accessed Monday through Friday ( remove it Saturday to prevent break-out from the dressing that i am allergic to ). If I wear a top that shows any part of the dressing I usually cover it with a scarf. This is not because I feel self-conscious but rather to avoid questions. People have asked me why I have a port and if I try to explain what POTS is and why the fluids help it's just too much effort for me. I also might wear a t-shirt or undershirt that cover it.

@Sarah Tee a syndrome is a group of symptoms that occur together and don;t otherwise have a name. POTS is a group of symptoms that mostly shares postural orthostatic tachycardia but has many other symptoms that do not necessarily occur in all patients with that syndrome.

I bet the Diltiazem helps! I started out on 30 mg 2xday and gradually increased to the extended release 240 mg. In the summer I go down to 180 mg b/c the heat causes my BP to drop.

@CallieAndToby22 - 🧡😘🥰😍👍 !!!

@Ashc - yep, not all plants are equal! I have an orchid that I used to just water every 2 days and sat it in a corner. It never did nothing and I was ready to throw it out but saw one little bud on it. My daughter got me a book on orchids, I read up on it, repotted it in proper soil and a bigger pot and changed location away from drafts and into more light. Tada - she has not stopped blooming since and currently has 38 ( !!!!!! ) beautiful flowers on it. ANYONE can be a successful gardener if the research is done and we don;t get plants that don't thrive in the environment we can provide. There are some veggies that simply don;t make it in my veggie garden b/c of the soil, elevation and zone - and others just take off! For example: I can't grow a good pepper here but tomatoes just grow and grow ... we wouldn't attempt to grow a cactus by the sea or watercress in the desert - ?

I rest, then get up and do a few dishes or sit on the floor folding laundry, maybe dust a bit, Then I rest again until I get my energy back. Has your doctor considered Modafinil? It is often used for fatigue and brain fog in POTS patients but originally it is used for narcolepsy. Maybe it could help? I am really sorry you have to go through all of this.

@Knellie - I too used to get tons of PVC's and PAC's as well as tachycardia. Since Carvelidol and Cardizem therapy I no longer have them, and the tachycardia is controlled as well. I take other POTS meds as well as IV fluids, it seems to be the combination that works, not any one med in particular ( although the beta blocker and calcium channel blocker seem to do the trick with palpitations ). @RecipeForDisaster - the PAC's and PVC's for POTS patients usually are caused by the ANS dysfunction, as well as the tachycardia ( obviously ). It is the sympathetic NS that makes the heart so irritable.

@Ashc - epsom salt includes other minerals, especially magnesium. That is why it is used for muscle aches and compresses etc.

OMG @Julyrose - I am so glad you are better! I did not know you had a port! That explains the armpit pain!!! So glad you got help and wishing you a speedy recovery!!!!!!

Hello @Positivelyjenny - I am so sorry you are going through this, again! And I also know how awful it is to have to go back to being unable to do the simplest things after having been fine for a while. I cannot tell you when you will feel better - these flares are unpredictable. But I can tell you what I do each time to get better, and so far it has always worked: - EXERCISE! When I am bedbound I do exercises with my legs and abs every 2 hours. This helps strengthen the muscles and get the blood flowing. I also do stretches in bed, and lift 1 lb weights. I get up every hours at least, even if just for 10 seconds, and I increase the time every day. Eventually I graduate to my rowing machine, even if just 3 reps. The worst thing we can do is fall into the trap of not doing anything - it can be hard to exercise when it makes us feel so bad but the longer we are inactive the worse we get. - HYDRATE. You mentioned IV fluids - when in a flare I get infusions 3 times a week and decrease as I start to feel better. If you respond to oral fluids that is better, I dont. - HAVE A ROUTINE. You mention naps - DON"T! In general we should always precede and follow any activity with rest but sleeping will be counterproductive. The more I sleep the less I want to do anything and the less energy i have. I have found that going to sleep around the same time every night and waking up at the same time is essential to fight fatigue. If I get overcome by fatigue I will allow myself a brief nap after lunch. - Keep active and do something you enjoy. When bedridden i do easy activities, like puzzles and knitting. As the energy returns I do something more challenging - right now I am learning how to read and write cherokee. - Stay within your limits. Often being on electronics or talking on the phone robs my energy. So I avoid doing anything that drains me but concentrate on things that GIVE me energy : exercises, the above mentioned activities, planning things to do when I am better ... - be positive. I allow myself a certain amount of self pity but then snap out of it and go back to getting better. I am no longer threatened by these flares - I now know that they always eventually improve. That's what helps me, but there are many ways to overcome. I hope you're back on your feet soon!

Thank you @p8d - this is very reassuring! I was offered the COVID shot ( Pfizer ) through my daughter's school and turned it down after reading up on it. I have inflammatory disease and just was not quite sure about that particular one. Now I have some new data to consider!

@Ashc - nope, no green thumb required. You just have to read up on what each plant needs and give it to them! Just like with kids and pets!

Hello @kel15 - I am so sorry you are having such a bad time with this! I get chest pain from POTS regularly, mine is caused by constriction of blood vessels around the heart ( I have HPOTS, so my POTS symptoms are mainly due to tight vessels ). The pain for me is in the left side of the chest radiating up my left neck, also accompanied by shortness of breath. Reading your post I noticed that there are several things pointing to the likelihood of your chest pain coming from GI issues: you mention it started shortly after the gallbladder surgery, it starts under the right rib cage and it comes in waves - like cramps. All of these issues could be GI related. The fact that you respond well to NSAIDS however leads me to believe that it is some type of inflammation. Have you tried to get ahold of the surgeon who did your surgery? What if it is related to the surgery? Also - have they done a Ultrasound, chest xray or CT scan to see what is going on? --- I know that chronic pain from gallbladder removal is not that uncommon, so that is another reason you might want to contact the surgeon. And you may also want to see a GI specialist. The chest pain you describe does not sound like the typical pain encountered from POTS, and the fact that all cardiac testing is normal is relief. I hope they can find what's going on!

Hi @CallieAndToby22 - I have a port and get infusions up to 3 times a week, depending on how I am. I used to have to drive 1 hour to a infusion clinic and stay there for 4 hours to get infusions, meaning my husband had to kill 4 hours in town while I was getting the IV. For me too the infusions would only help for a few days and then the effect would go away. Back then I was in the ER every 6-8 weeks for autonomic seizures and syncope. I - like you - have IC and could not drink enough fluid, plus for some reason oral salt and fluids were not as effective. I seemed to pee them all out, whereas IV fluids stay in the blood vessels. ---- My local cardiologist was the only one who felt a port would be good for me but did not want to go against my PCP. I begged my PCP and my autonomic specialist for years to let me have a port for home infusions but they always felt the risks outweighed the benefits. Until one time I was in the ER for seizures and high BP and they admitted me and the hospitalist refused to give me IV fluids b/c he believed that if I can drink I don;t need them. I ended up crying and begging, saying I did not have to be in hospital for that. He said I can sign out anytime. I ended up having 2 more seizures before he finally agreed to give me a half bag of IV fluids - just enough to send me home. That was the final straw for my PCP and he agreed to the port. I never looked back since then. I have a nurse come once a week to change the needle and other than that I do everything myself. If I feel bad ( and as you know this can come on very suddenly ) I give myself a bag of fluids and improve instantly. I have not had a seizure other than from surgery or from a triggered flare in years. I have not been in hospital for seizures or POTS in 3 years and - although still being disabled, housebound and limited - have a much better quality of life. The best thing you can do is to print as much info about the benefits of ports as you can and bring them to your appointments. I even printed out success stories ( like mine ) or other's and gave them to my PCP. Remind your doc that in your case you are not able to take in orally the amount of fluids that you need and therefore are a good candidate for IV fluids. If you are not able to get fluids as an outpatient in an infusion clinic on a weekly basis then that is also a reason for a port and home infusions. He could try a PICC line first to see how much you benefit if he is not comfortable with a port right away. Both my sisters have POTS and they both get IV fluids at their doc's office preventatively, he inserts a needle each time and takes it out before they leave. But for outpatient infusions like that you would have to be well enough to go to an infusion center or clinic every week. Your doc might change his mind if eh sees how you respond to IV fluids. Demand that he orders them weekly for one month, even if you have to travel to a clinic for it. Then show him how much you improved while getting the fluids - this can be proof that you benefit from them. Best of Luck!!!!!

@TorturedSoul - I can totally tell if I don't get enough fluids, my POTS gets very bad right away. Most people here drink a lot just to stay upright. I have to make myself drink too, I barely get thirsty. But it is really important for our BP and HR as well as symptoms like brain fog and fatigue that we drink a lot. And it is important to increase salt along with the fluids - it keeps the extra fluid in your blood vessels, where it is needed to increase volume.

Oh @Hippopotsamus - I so know where you are coming from!!! I used to think the same way, that I can WILL my way out of my symptoms! That if I ignore/push/force myself to go on despite of my limitations I could go back to normal. And man - did I fight!!!! But then I had to stop denying the reality that this is not going away, that this is real and I really AM having a chronic illness. That realization turned into depression, I felt like I had given up. And after that I slowly crawled out of it, decided that if I cannot beat this then I will have to accept it. So here I am, still disabled, still limited, still a dysautonomiac - yet so much better off! I now am at peace with it, and I can be gentle on myself, do what I can when I can and not feel sorry for myself. I am - to a degree - in control of things again. I believe the causes you mention above are all at play - they are all symptoms and causes of POTS. And the only treatment we can hope for - at this point - is symptom relief. I have been on the SSRI Escitalopram ( Lexapro ) for many years and it has greatly helped me. The high adrenaline levels ( I have hyperPOTS ) caused me to be really high strung and very nervous all of the time. I was always on high alert. This of course caused a lot of stress. The Lexapro has helped me to calm down and feel more balanced. I was afraid of taking it, I thought I might be sedated, or maybe my personality would change. But actually it did not do anything big - I simply noticed after about 6 or so weeks that I felt better, and more balanced. SSRI or SNRI are both proven to be effective for POTS symptoms. They help regulating the neurotransmitters that are the culprit for many of our symptoms. My specialist often uses an SNRI, especially Wellbutrin ( Bupropion ) instead - or even along with - an SSRI. I took it for a few weeks but had an adverse reaction ( acne ) from it and had to stop it, or else I would still be on it. If your doctor is open to prescribing an SSRI or SNRI I would try it. But know that it takes 6-8 weeks before you see any effects. For me it is a combination of several things: I take a mix of meds: cardiac for tachycardia and high BP, stimulant for brain fog, SSRI for restlessness and mood, Plaquenil for inflammation ... and weekly IV fluids via port for prevention of syncope and seizures. I also salt/fluid load and exercise on my rowing machine when able. But what is just as effective is the fact that I am disabled and housebound and therefore do not have to do anything that could cause my symptoms to flare. If I could not live within my ever changing limits I would be very ill despite all of these treatments. So, in other words: for most of us getting control of this illness is not one single thing but rather a complete change of how we live and what we do every day, in addition to meds, exercise/rest, fluids etc.

@peachychou123 - I get numb and tingly arms and hands when I put my arms up. I often do this in my sleep and then wake up with numb arms. I don't believe that is due to a weak heart but rather due to the fact that the blood vessels in the arm get pinched off. Also - there are a lot of big nerves going through the armpit, they can do it too.

@Nin - I hear you! Yes, the fatigue from POTS can be debilitating. I too mind it more than some of the other symptoms. But I have found that when my POTS is under control the fatigue improves as well, and when I am in a flare it is really bad. Some days it feels like I actually have to force myself to take every single step! Some Doctor once said that not every CFS patient has POTS but every POTS patient has CFS. Yes, it is a part of POTS.

Hello @Coffeebean! I had 2 TTT's. They are not fun, especially if they have instructed you to stop all meds beforehand. They will strap you to a table, hook you up to BP monitor and EKG and then they will stand the whole table up, with you on it, for 30 minutes or until you pass out ( if that happens, you do not have to pass out in order to get a POTS diagnosis. If you have POTS your heart may start pounding, you might get cold and clammy, short of breath, have chest pain etc. But do not panic, no matter what happens - they have it under control, and these symptoms - as uncomfortable as they are - are normal in dysautonomia when standing up like that. They will also start an IV to help you feel better afterwards. Throughout the test they will ask you how you feel, and it is important to mention any and all symptoms you might experience. In POTS your HR will go up at least 30 BPM within the first 10 minutes of being upright, and STAY THERE, along with the symptoms mentioned, and other symptoms as well are possible. If your O2 level drops they will give you oxygen, so don;t worry about that. Good Luck - let us know how you did!!!!!!!

@Sarah Tee - I am sorry you lost your GP, I know how devastating that can be b/c we are so dependent on our docs! --- With all of the problems you had with that practice, and now that your doc is no longer there, I personally would just switch practice all together. Having a bad relationship with staff at a practice can interfere with the way you communicate with them, and that can be bad for you. I fired several docs because they were either rude and ignorant or did not know about POTS ( or they thought they knew EVERYTHING about it ! ) You have to see a new doc anyway - so why put up with that office? Often we have to kiss several frogs before we find our prince. Good idea to ask around what exeriences others have with their GP. In general - if a physician is described as kind, compassionate and knowledgeable they make a good fit for POTS patients, whether they know about POTS or not. A understanding GP will listen, and take you serious - that means he/she will be willing to learn in order to help you with your symptoms. Best of Luck - don't settle!

I agree with @misseb. I do not tolerate big meals, so I too graze all day. My go-to are protein bars, nuts, bananas, joghurts and sandwiches. When i cook meals for my family I just have the protein and vegetable and avoid the carbs. This has greatly improved my GI symptoms and prevented postprandial fatigue.

@Abe - I am so sorry! Yes, the unreliability of our abilities is the worst part of POTS - but unfortunately a real symptoms that is difficult to treat. I always tell people that it is like balancing on a silk thread: one unexpected breeze or startle and down you go ... My sister has POTS and suffers from eye problems. she was put on Mestinon by her autonomic specialist and the problem got much better. Mestinon is a commonly used treatment for HPOTS. Maybe something to look into?

Thank you @Angelika_23 - I am so glad you got through it! You are lucky that you did not end up with a flare. Keep it up!

I put the bit of energy I have in the spring into gardening. I create themed flowerbeds around my property and add to them every spring. A lot of the plants I start from seed, so I get busy in March and go until May. That works out great b/c once it gets too hot in the summer I pretty much have to stay inside except for early morning and after sun set. When the flowers are done I have another project - I will refinish an antique desk in my bedroom. I can do all the sanding and coating on my shady porch in the mornings. I used to love working with wood but d/t POTS I haven't been able to do much of it.

@CallieAndToby22 - I would have the nurse for the neurologist that will be doing the BP measuring check with Vandi if they indeed want you to hold the meds.