Pistol

Hi @Pupmum25 - yes, they gave me midodrine in the beginning and it did not work for me. My autonomic specialist ( not the prescribing physician ) told me later that it does not work in HPOTS. --- I too had autonomic testing done at Vanderbilt and it was normal - and I was NOT symptomatic at the time. I was diagnosed one year later by another specialist who did norepinephrine testing and it was elevated. --- I am glad to hear that salt, water and lifestyle changes are somewhat helping you. I hope it continues! If the adrenaline rushes continue I would ask for a neurotransmitter test again. Best of luck!!!

Hello @Pupmum25 - yes. I know this feeling. I have HPOTS and this used to happen tp me after eating. Normally after a meal the parasympathetic system kicks in and diverts the circulation to the gut, in order to digest. As a result we often feel tired lazy afterwards ( think Thanksgiving !!! ). If the sympathetic system kicks in instead ( as it can happen in HPOTS ) then we experience an adrenaline rush instead - hence the symptoms you describe. I have learned the best way to deal with this is to avoid large meals entirely. I eat 6-8 "snacks" a day and avoid foods that require a lot of energy to digest - such as pasta, white bread, cakes etc. This has completely stopped these episodes to happen after eating. Have they diagnosed you with HPOTS? Did they test neurotransmitters? And what meds do you take?

@Scout - last year I started to knit again. I ordered a big bag of different colored cotton yarn and made sets of place settings for christmas presents. They came out sooo good! And I could make them so they fit in the color schemes of peoples kitchens. I included dish rags and pot holders too. You can easily crochet these too - maybe a good project for next Christmas? Once I got back into knitting I loved it so much that I did not stop at place settings - I made scarfs, shawls, sweaters and cardigans -- and pillow cases!!!!!

@cmep37 - I have lost a bit of weight last year and can't seem to be able to put it back on. I eat protein bars, like CLIF or KIND bars. They are nutritious and fill you up but are not too much to eat at once.

@aperson - you can also request this brochure to be sent to the physician you choose: Physician Brochures - Dysautonomia Information Network (DINET)

hello @aperson - WELCOME! This Forum is full of people that understand what you are going through and have a lot of experience, so you came to the right place! You can find a wealth of information under the "Information Resources" and the "Living-with-dysautonomia" tabs on the top of this page. All of your symptoms are typical for POTS, and the HR increase you experience upon standing is a dead give-away. I agree with much of what @Knellie already said, and right now it is essential that you find a doctor that is knowledgeable of dysautonomia. Depending on where you live you can call the major hospitals and ask if they have a physician who treats POTS. You can also refer to our Physician list. Unfortunately most of us here have to travel out of state for autonomic specialist care. Due to HR increases cardiologists are usually the first docs to see POTS patients, and the typical tests - besides EKG and blood work - are TTT ( Tilt Table Test ) and sometimes a halter monitor with which they can record your HR over a period of days. If the TTT shows POTS often the first step is a beta blocker, to lower your HR. Also - as Knellie mentioned - increased salt and water intake as well as 30-40 mmHg compression hose are very important and often help tremendously. There are different types of POTS, so depending on the type you have finding the right med can be frustrating and a long process. But many people do well with just the above mentioned treatments. It is also very important to cut back on activity - since being upright zaps us of energy ( b/c the body has to try so hard to circulate enough blood to the brain and organs -) we need to spend a lot of time resting between activities. When you feel dizzy etc you need to sit down and rest!!!!!! Please take this serious - I pushed through and ignored my symptoms for years and ended up disabled from POTS. Had I taken the right steps from the beginning I probably would not be as affected as I am today. However - mild aerobic exercise is recommended and helps as well. So - listen to your body, rest when you can and exercise TO TOLERANCE when you feel well enough to do it. The brain fog you describe also is typical - since the increased HR is in response to the body trying to get more blood to the brain we often experience a lack of oxygen to the brain, and this causes all types of cognitive issues. Brain fog, fatigue and irritability are a common result. I hope you will do well, and I wish you the best. Let us know how you are doing!

Try bubbly water with some juice in it.

@Chuske My sister, who has autonomic dysfunction closely related to HPOTS but without tachycardia, was put on Florinef and could not tolerate it at all. She described symptoms similar to yours. Depending on the type of dysautonomia you have it can make symptoms worse - not all POTS is the same POTS.

@dancer65 - I am so sorry! Can they treat that? I am so glad you went to get checked. Especially since the smallest things can throw us out of whack it is very important to see our docs whenever something out-of-the ordinary is wrong. Wishing you all the Best !

I agree!!! I know many people that lost a considerable amount of weight just from cutting out soda and beer!

@Knellie - At one point I gained about 20 lbs since onset of POTS, before I was always underweight. This was mostly due to careless eating habits, depression and inactivity. Due to frequent seizures and syncope I was afraid to exercise. I had severe GERD and IBS and once they treated those the pounds just landed left and right. I also developed IC, so between the GI problems and the IC I had to change my diet. For the depression ( obviously caused by living with the limitations of POTS ) I started Lexapro with great results, Diet-wise I stopped eating meals and instead eat 6-7 snacks a day, I can be filled up from a yoghurt or a banana! I try to avoid heavy carbs like pasta, white bread or sweets and load up on healthy foods like nuts, low acid fruit ( for IC a low-acid diet is needed ), lean proteins, whole grain breads ( I bake my own ) and cooked veggies. Exercise is a must for POTS and I have found that no matter how bad we are - there is always SOME exercise we can do. On good days I stay active by spreading chores over the course of the day, with ample rest periods in between. I also use a rowing machine at least three times a week, even if it is just for 20 reps. It is an excellent exercise for POTS since you are sitting but working the whole body at the same time. Plus they have different settings of how hard you have to work, so you can start on the lowest setting. I got mine for $ 80 on amazon and am happy with it. On bad days or when I am so bad that I have to stay in bed I get up every 30 minutes to maintain my orthostatic tolerance and i do leg and core strengthening exercises lying down. Even just one or two minutes three times a day can help!!!! With this regimen I managed to loose 20 lbs in 2020.

@Ashc - they can be, but once you identify what type of Orchid you have, provide it with the right soil and water them only once a week ( with plant food ) and - most importantly - find the right place for it in your home they thrive. They like sun but do not tolerate drafts or drastic temperature changes. Mine is by a south-facing window ad thrives wonderfully! If you would like to pamper an orchid - PM me! They are on sale for Valentine's day ( that's how I acquired my beauty ). I like a very light hue of buttery lemon or tea green. They lighten up my hallway and it is so welcoming and mood boosting! If you like white you can also just paint one wall - the one in a room that is the most exposed. Then arrange accessories in the room with that color on it ( pillows, throws etc ). I used to LOVE painting, prior to POTS we renovated a huge house inside and out, and i got to use my interior decorating skills. I painted rooms, redid furniture and cabinets, landscaped the garden ... unfortunately none of these activities are POTS-friendly. I helped my husband paint the siding of our house last summer and could do about 30 minutes in the morning, and had to stay in bed for most of the rest of the day.

😵@CallieAndToby22 - I am so so sorry you are that unwell!!!!! As you know I too suffer from seizures due to loosing circulation to the brain ( for me it is caused by extreme vasoconstriction from too much adrenaline being dumped ). So I am very familiar with what these seizures are like - and they are scary 😬. The only things that have helped me with them were Diltiazem, a calcium channel blocker that dilates the blood vessels, and up to 3 liters of IV fluids a week ( they keep the vessels open and stop the urge of the ANS to overproduce adrenaline ). Having said that - you have so many things going on that I am not sure if that would even help you. Any of the issues you are struggling with can potentially worsen your POTS, so it is beyond my knowledge to even guess. I am glad your PCP referred you, and I hope they will get to the bottom of things and find a treatment. Hopefully you will not have to wait too long for an appointment. Until then - hang in there, keep your head up and be positive! When at my worst I thought I would die like this, unable to get out of bed without seizing. But I got better - so there is hope!!!!!! Best wishes!!!

@racingheart77 - I have HPOTS and am very familiar with these episodes. I used to fall asleep fast and then wake up in a panic after 3 hours. It was explained to me that this occurs when the adrenaline level fails to drop after 3 hours of sleep ( the amount of time it takes the body to go into REM sleep ). In HPOTS this can not only cause waking up from sleep but also cause the ANS to actually make MORE norepinephrine, resulting in the symptoms you describe. For me this stopped happening when I was put on the right medication and treatment schedule. Also - I take Lorazepam sometimes for sleep, it helped me with those symptoms. I think it helps because it takes away the anxiety that comes with adrenaline surges. Whatever the cause - it helped me make it through the toughest nights. I agree with @dancer65 - a healthy sleep hygiene can help, but it takes time. Another cause of these attacks can be certain medications, especially in people with HPOTS. Clonidine for example can cause this.

Thanks @dancer65 - I'm keeping my fingers crossed for you!

I agree!!! I love growing plants, whether it is inside or in my gardens outside. I have many inside plants, my show piece being an Orchid that always blooms - currently with over 30 blooms!!!!! My husband purchased it years ago from a supermarket for mothers day, and after 6 months it looked dead. I was ready to throw it on the compost pile when I saw a tiny little new sprout ... I researched how to care for orchids, bought the proper soil and plant food and repotted it - 8 years later it is breathtakingly healthy and rewards us with constant blooms. I am so proud of it! I find that planting in general is a very rewarding boredom buster. Whether purchasing mature plants or growing from seed - tending to them is like any relationship: give and take. And the upkeep keeps us busy enough without being overwhelming. This year I will try growing lavender from seeds ( in addition to my other veggie plants ) - growing lavender is tricky, since the seeds need to be sprouted and grown on a heating pad. I have never been successful, but I am determined to succeed this year!!!!

@dancer65 - still get that Urine test, just to make sure it is not a UTI! If there is blood in the urine but no bacteria it could be IC!

@dancer65 - have you been checked for a UTI? Your symptoms could also be from that. A simple urine sample can detect that. UTI's can be very hard on many women, but especially on us "older" specimens ( I am 54 ). A UTI will cause a flare since it is so stressful on the body. I just had one and as soon as the fatigue and orthostatic intolerance started I had my urine checked and they put me on an antibiotic. My only symptoms were bladder spasms and the urge to empty my bladder - sometimes incompletely as with you. Your doctor can order one over the phone. The fact that you had blood in your urine should have been evaluated back then. There are several causes for that, most commonly UTI and IC. I really would get a urine test to be sure. As I said - if it is a UTI it needs to be treated right away since it can easily get worse if left untreated, and even lead to kidney infection. IC is a chronic condition and is mostly treated with reducing acid in the food, either by avoiding certain foods or by taking an acid-reducing med before eating high acid foods, called PRELIEF here in the US.

@dancer65 - yes, urinary symptoms are common in POTS. For myself I find that when I am over stimulated and my adrenaline runs high I pee all of the time, sometimes up to 1000 ml urine in one hour! I think that is what then leads to low volume and that triggers the ANS malfunctions. --- I also suffer from Interstitial cystitis, which also is a common condition in POTS. It causes many unpleasant symptoms, including bladder spasms, having to pee all the time but only a little each time, peeing but stopping before you are done ... what I did was go to a urologist who scoped my bladder and diagnosed the IC. I always has blood in my urine samples, although not visibly. There are some treatments you can try, but it is a chronic condition. I would keep a watchful eye and see a urologist if it continues. Sorry you developed this symptoms on top of all the other ones - it just never stops, does it ? 😆

I soo agree! This was the case for me: they kept ordering IV fluids temporarily for flares b/c they worked so well, but they refused to order a port so I could get them every week. The risks of infection and blood clots were too high. When my PCP finally agreed to the port and ordered home infusions I became a changed person. My quality of life increased immediately, and I have been so much better for the past 2 years b/c of the fluids! I never responded too good to meds, although they did help, just not enough. With the IV fluids I am well ( as long as I live within my limits, still am housebound but no longer have seizures or pass out ).

@deeceet - welcome to the forum! Thank you for sharing your experience. I do not suffer from paresthesia but my husband does. He gets spots somewhere on his body ( usually legs and arms ) where he feels as if someone pouted cold or hot water on him - but nothing is there. We also have no idea why this happens. Thankfully it never lasts.

@TKH - welcome to our forum! --- Yes, change in barometric pressure is known to cause worsening dysautonomia symptoms. For me it is not only the weather changes but also travelling: I live at a high elevation, mountaineous region and when I travel to a lower elevation or even to sea level I am in flare right away.

@cmep37 I am so sorry you have to go through that! Thank you for sharing your experience - it confirms what I was told: simply having POTS does not put at risk for worse symptoms form COVID but we will most likely experience an epxected bad flare from being ill. What you are doing to make it through the flare is exactly what we are supposed to do, and I am glad you emphasized on doing both rest and getting up regularly to prevent deconditioning. Since we feel so miserable when in a flare getting up is a challenge - but a necessary one. Wishing you a speedy recovery and best wishes!!!!! Hang in there.

@MTRJ75 - interesting articles. Thank you for always sharing your research with us 😉👍

@Elizaangelica - Yes, POTS comes and goes for all of us, but it also is quite common that sometimes meds that have helped us suddenly stop working. When that is the case - at least in my case - my specialist or my cardiologist have recommended to either increase a med or they changed me to something else entirely. To determine if it is a flare or worsening POTS we have to ride it out, meaning do what is recommended during a flare: the typical increase in salt and water intake, compression hose, AMPLE rest and daily exercises to tolerance. If you are currently mostly bedridden here is what I do for exercise during a flare: stand up at least twice an hour, do leg exercises while lying as well as ab crunches; when tolerated do sitting and standing exercises and use a band or light weights. This helps me come out of a flare without having to completely recondition, and it cuts the time of the flare. Even if it is just a minute three times a day - it is important. Increase the time spent exercising slowly every day. Does your cardiologist know more about POTS? I think a month of your symptoms necessitates a call to him/her, especially since he/she was the one that ordered the Ivabradine. Many of us on this forum benefit from a Saline infusion during flares - the added volume restores balance in the cardio-vascular system and can shorten, or even stop, a flare. My autonomic specialist has ordered a weekly infusion for 4 weeks in the past, and that fixed the flare. If you have a prescription you can get an infusion at an infusion center or Outpatient surgery center ( if your physician is willing to try this ). I hope you will start feeling better soon 😘