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@peachychou123 - Oh my, what a scary disaster! I feel for you, although it was a bad idea to attempt the walk I can see that staying in that car was an equally bad idea!!!! -- I have been in similar situations where I had to willingly make a bad choice and pay for it with weeks of bedrest. I am glad you made it home OK and that you can find the necessary time t rest and slowly recondition. One word of wisdom: if you are discharged from the ER but still find yourself as unstable as you were ( and a BP of 130/118 whilst being symptomatic is NOT NORMAL ) then going back would be the thing to do. Any patient that comes back to the ER within 24 hours has to be checked more properly and warrants admission to the hospital. You obviously were to sick to go home and the ER just did not know what to do with you ( they probably did not see the emergency b/c they did not know about POTS ) and going back would not have been unreasonable. They really should give you IV fluids when you are so bad, since that is a known and proven way to temporarily improve a POTS flare. I was in the ER every 6-8 weeks when I was at my worst and IV fluids always turned me around. You may want to discuss that option with your doc. With a prescription you can get IV fluids in most Urgent Care centers or in the ER. I wish you a speedy recovery!!!!!!

Hello @EH89, and welcome to this forum! -- I have HPOTS, and had it since childhood. I was diagnosed in 2012, and my symptoms started after child birth. I suddenly became so hyper, tired all the time, and i also developed joint pains. It very well could be a flare due to the changes your body went through after giving birth, and it is possible that it will improve. Many women do get better. For me that was not the case, and I became chronically ill. My first thought also went to Sjogrens. Have you seen a rheumatologist? There are specific tests for Sjogrens. I was tested for autoimmune disease by a rheumo due to elevated ESR and continouus joint pains and swelling ( I tested negative for autoimmune but my autonomic specialist placed me on Plaquenil for the joint pains and it helps. ) They have found that POTS is highly related to auto-inflammatory issues ( not the same as auto-immune ). Oh - I sooo relate! When my daughter ( now 16 ) was that little I worked full time and on days off had barely enough energy to take care of her - there was not an ounce left for my poor husband! I too felt like an old woman - at 37! I told my PCP that I used to be like a sportscar and now felt like a 1966 pick-up truck!!! The hyper-surges, nervousness and feeling overwhelmed switched existence with extreme fatigue and weakness very fast, and I became extremely irritable. Think: when our ANS goes in overdrive we are constantly trapped in the fight-and-flight response. I explain it like this: if you are fighting off a mountain lion you find questions about what's for dinner quite unimportant. I used to snap at people a lot, and it took all of what I had to take care of my baby. There is hope, and it CAN get better. First of all: get someone to help with the baby. You need time to retreat and rest when things get overwhelming. Lie down WITHOUT INTERRUPTIONS and calm down. Then get up slowly. Do only one thing at a time - I find that doing this helps avoiding surges. When you can concentrate only on the task at hand you can be calmer. Drink a LOT of fluids and increase salt ( check with doc first if you are nursing ). Wear compression hose - this is very important and can help avoid surges. If you have problems with fast HR ask your doc to do orthostatic vital signs - lying, sitting and standing at 1,3, 5 and 10 minutes. If you HR goes up 30 BPM or more it is considered POTS. Then ask for a Tilt Table Test - the proper form of the same test. This test is used to make the official diagnosis. Next would be medication: the most commonly prescribed med is a beta blocker, but there are many others used, different ones for different mechanisms. Also - getting checked for autoimmune disease and then treated for it can help stabilizing your POTS symptoms. If you are nursing it is possible that the added demands on your body are triggers. Check with your OB-GYN if this could be the case. Some women find that once weaning off the symptoms improve to a degree. Here are some articles from our Information Resources Site that you might find helpful: Hyperadrenergic POTS (hyperPOTS) An overview of a POTS subtype - POTS - Dysautonomia Information Network (DINET) What are the Mechanisms of POTS & other forms of Dysautonomia? How is POTS Diagnosed? - POTS - Dysautonomia Information Network (DINET) I wish you well, and hope that you will improve. I was hopeless and became depressed when I found myself unable to cope and function when I first became ill - but it did get better for me. I am one of the unfortunate people that got stuck with POTS as a chronic illness, but today I live a fullfilling life ( despite my limitations ). Once your AI issues are diagnosed and treated you might find yourself in better place. Best of luck - this forum is a good place to share how you feel, and to ask questions. May here have been in your shoes! Stay strong - 😉

@Ashc - I use it also to apply a warm wet compress to sore joints, or after an injury like a sprain. I have a bum knee that swells and hurts at times. I apply a compress and then rub it with Arnica oil. It really helps! Also - another short cut I use when I am too ill and cannot tolerate a shower or bath: I wash only my hair under the tub faucet and do a "bucket bath" in the shower. This way I clean up without having to stand or being submerged in water. And it is quick!

@CallieAndToby22 - I had to stop my meds 3 days before my TTT. Granted - I was not on many meds back then but it still got me sick as a dog without them. I am not sure if I could do that today - I am on a lot of meds that should not be stopped abruptly. Not sure about yours.

@CallieAndToby22 - has your urologist ever considered an indwelling urinary catheter to help with your symptoms?

@p8d - yes, I flare very much if I spend too much time in the sun. I have not yet figured out why. It is not even just heat, since I get it when out in the sun on cool days. I read somewhere that sunlight triggers the ANS by dilating the pupils in reaction to the bright light. I can be out doing something in the garden feeling just fine but from one second to the other I am floored ( literally! ). It always takes me a few days or longer to get better. --- I also have been experiencing more joint pains with the weather change, but I am on Plaquenil now and it's not as bad as before. Hope you get better soon 🧡

I sleep 7-8 hours a night. I did not used to ( hyperadrenergic POTS causes too much adrenaline, so we are pumped up 24/7 ) but since pretty well stabilized on meds sleep is no longer an issue, unless I am recovering from a flare.

@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.