Bailee

Passed out in store. Was getting dizzy before hand. I think my dizziness is associated with turning my body/head. Im on midrodine and ivabradine but my dizziness/lightheadedness is still there. The midrodine gives my energy , ivabradine keeps my heart rate down. I don’t know what else to do?

Went to target today as walked in a my dizziness was non existent but as soon as a started moving around shifting my body moving my head and body I got progressively more dizzier and disoriented/ off. However when on my treadmill or I’m walking straight in one direction I’m not shifting body as much. I’ve noticed this pattern for a while? Any tips ? Should I bring this up to my doctor? Does anyone know what it is. My dad says it is vertigo but it’s constantly happening when my body shifts it doesn’t just come and go.

Anyone know how to treat dizziness. It’s not even lightheadedness more so when walking a dizziness like a slight spinning or disorientation. It happens when I’m walking and is my biggest struggle. My blood pressure and heart rate are fine but the dizziness prevents me from walking around more.

Hello everyone I had a question. How long are you usually on medication for Pots. Right now I’m on midrodine 3x a day and ivabradine 1.5 tablets a day. How long are you on medication for. I’ve seen some people say pills treat the symptoms but don’t necessarily address the problem. However there is not cure as of right now for pots. Any advice? Also ivabradine is getting expensive 87$ for everyone 3 months with my insurance, in combination with other hospitals pills and medication. Any advice? Should I try metroplol again since I’m on midrodine I’m hoping it won’t drop my blood pressure again like it did last time?

Trying to clean my house but got fatigued so I sat down and my blood pressure readings are like this anyone know why I took two salt tablets and 2.5 mg midodrine a hour ago.

Does anyone know what the difference is between walking on a treadmill vs walking around regularly like outsides and in stores. When I’m on the treadmill walking I’m ok I mean I still have to take 1-2 minutes breaks when I feel fatigued but I’m able to walk about 17 minutes with breaks. When I’m out and about it’s a different story I get fatigued earlier more and slight dizziness like I’m out of it and have to concentrate hard to not collapse. I just did a 6 minutes walk outside and I got the same brain fog and dizziness. My heart rate stayed between 80-103 thanks to colanor. I’m on midrodine 2.5 x 3 a day so I don’t think my vitals are dropping. Maybe it the action of actually moving my body around/turning that’s different from being on a treadmill. Does anyone have an answer. I also have being staying on top of my salt 5 grams a day as directed my doctor and 90-100 oz of water with electrolytes throughout the day.

Yes at my visit my blood pressure and heart rate was stable my doctor made me lay down for 5 minutes, sit for 5 minutes, and stand for 5 minutes. But when I’m moving around trying to do daily activities such a clean up my room , walk around target, etc. It’s not the palpitations because the ivabradine has been helping with this but I get winded/fatigued so easily doing simple things. I asked my doctor she said this was activity intolerance and she couldn’t tell me when this will get better or how I can combat it. It’s a guessing game now I guess. But this symptoms has the biggest impact on my quality of life.

Anyone know how to deal with dizziness/lightheadedness when walking around and moving. I’m taking midrodine, ivabradine, and salt tablets. I don’t get palpitations or pounding heart, but when I’m up and trying to move around I get dizzy lightheaded. When I’m on my treadmill walking I don’t get this, however when my body has to change different positions it does . I’m hoping to go back to school however this is my biggest struggle that’s keeps me home bound. Forgot to mention I’m about 8 months into treatment.

Has anyone had GI issues. At first it started with not being able to make frequent bowel movements. I would make maybe 1-2 a week if that. I told my doctor she said to take miralax which I did. One month later not much has changed. Bowel movements are very slow along with digestion. This week the issues seemed to have worsened now I have diarrhea and nausea every time I have a meal. I’ve split my meals in half to reduce the symptoms seemed to reduce nausea but not diarrhea. With splitting my meals I’m not eating much food so it’s making my fatigue worse. I’m drinking oral rehydration solutions so I don’t get dehydrated. I don’t drink milk or eat dairy + gluten free so I’m not sure what’s happening. Made an appointment with GI in two weeks. I also have hypothyroidism so don’t know if that’s contributing. Kind of sucks I’ve never had GI issues like this before.

My left leg tingling. After I stand up immediately my left calf will start to tingling spreading to the back of my thigh. Should I bring this up with my doctor? I had a QSART and patch test. QSART findings “Sweat volumes as measured by QSART responses at the proximal leg and foot are low”. While skin biopsy was normal. It only happens when I stand up and only on one leg. I don’t know if this is worth mentioning but my ankle jerk reflex was 1/4 decreased both legs.

Anyone know any electrolytes that won’t irritate stomach and cause nausea/bloating. I tried trioral because it’s cheap but it keeps making me nauseated and bloated.

Has anyone tried making there own salt tablets I’m thinking about trying it . The ones I’m taking are kinda expensive to reach my goal of 3000-4000 mg of sodium a day.

Hello I’m needing some advice? I was diagnosed with pots this November. I went from wheelchair bound to being able to walk around my house with a walker and short distances when I rarely leave the house. I’m on corlanor 5mg in the morning and 2.5 mg in the evening with 2.5 mg of midodrine twice a day. I was also given a cardio plan from the Cleveland clinic where I receive my treatment. I’m on my last block and I’ve graduated from stationary bike to treadmill 2-3 mph and with controlled heart rate. I say all this because even though I’ve improved and had significantly less palpitations, I’m still struggling with walking. I get lightheaded when moving around a lot still and especially when I go out to events or the eat and I have to walk around even the smallest of distances I get lightheaded spells. On top of having to start walking with the cardio plan I was given I wear compression socks and even when I manage to get through the workout for the rest of the day I can’t move around much because my lightheaded/dizziness’s gets so sad with a migraine. I have an imperson appointment with my pots team tomorrow? Is there anything I should ask? Anything you would suggest that has helped some of you? I just can’t understand how my palpitations got better but the lightheadedness seems to be persistent?

Hello I’m needing some advice? I was diagnosed with pots this November. I went from wheelchair bound to being able to walk around my house with a walker and short distances when I rarely leave the house. I’m on corlanor 5mg in the morning and 2.5 mg in the evening with 2.5 mg of midodrine twice a day. I was also given a cardio plan from the Cleveland clinic where I receive my treatment. I’m on my last block and I’ve graduated from stationary bike to treadmill 2-3 mph and with controlled heart rate. I say all this because even though I’ve improved and had significantly less palpitations, I’m still struggling with walking. I get lightheaded when moving around a lot still and especially when I go out to events or the eat and I have to walk around even the smallest of distances I get lightheaded spells. On top of having to start walking with the cardio plan I was given I wear compression socks and even when I manage to get through the workout for the rest of the day I can’t move around much because my lightheaded/dizziness’s gets so sad with a migraine. I have an imperson appointment with my pots team tomorrow? Is there anything I should ask? Anything you would suggest that has helped some of you? I just can’t understand how my palpitations got better but the lightheadedness seems to be persistent?

Hi I’m recently diagnosed with Pots and my care team of nurses and doctors I think gave me the wrong measurements of sodium in mg to salt in gram. I told them I was taking about 3000-4000 mg of salt a day which according to my conversation is 7.5 to 10 grams a day. However when I called and double checked the nurse told me this is only about 3-4 grams of salt a day and to increase due to symptoms of lightheadedness. She said pots patients do anywhere between 3-10 grams a day. She told the ratio is 1:1 to 3000 mg equal 3 grams of salt . So I upped my intake to 8000 mg a day . Tracking in MyFitnessPal. I was thinking there’s no way I can get all this salt in without making me self sick so I double checked multiple sources on information for salt for the dysautonomia and pots patients. They all say this 8 grams of salt pr day x 387.6 milligrams of sodium per gram of salt= 3101 mg of sodium per day So have I been takin 16 grams a day or … I’ll link the conversion below

Yes I’m on ivabradine so my heart rate peaked at 115 when I stood and quickly went down to 106-109. I take ivabradine but I’ve heard some people also take midrodine to help with there lightheadedness? Maybe I can bring this up to my doctor?

My blood pressure was normal I’ll left numbers below however I’m still getting lightheaded. Is there a difference between low blood volume and low blood pressure? I’m on ivabradine so my heart rate doesn’t go up as much but the blood still isn’t reaching my brain I guess. Please help I’ve been miserable the past week and unable to even stand and walk for long . Sitting 5 minutes blood pressure 105/73 Standing for 1 minute: blood pressure 102/72 5 min standing had to sit early Dizzy lightheaded fatigue Blood pressure 109/85

Recently diagnosed with pots. My blood pressure was normal I’ll left numbers below however I’m still getting lightheaded. Is there a difference between low blood volume and low blood pressure? I’m on ivabradine so my heart rate doesn’t go up as much but the blood still isn’t reaching my brain I guess. Please help I’ve been miserable the past week and unable to even stand and walk for long . Sitting 5 minutes blood pressure 105/73 Standing for 1 minute: blood pressure 102/72 5 min standing had to sit early Dizzy lightheaded fatigue Blood pressure 109/85

My blood pressure was fine. It honestly might be due to my period a lot of people with pots say that before and during their pots is worse with lightheadedness, etc.

Hello I’m still new to understanding my diagnosis of pots I’ve been looking online and a bunch of people said that ivabradine does help their tachycardia but unfortunately doesn’t do much for the lightheadedness which I am dealing with. My question is what helps improve blood volume for me after I do my recumbent bike I feel a bit better along with electrolytes and salt tablets . I was recently wheelchair bound so I’m grateful for my small bit of progress that allows me to walk around with a walker. But I can’t shake the lightheadedness.

Hello I’m still new to understanding my diagnosis of pots I’ve been looking online and a bunch of people said that ivabradine does help their tachycardia but unfortunately doesn’t do much for the lightheadedness which I am dealing with. My question is what helps improve blood volume for me after I do my recumbent bike I feel a bit better along with electrolytes and salt tablets . I was recently wheelchair bound so I’m grateful for my small bit of progress that allows me to walk around with a walker. But I can’t shake the lightheadedness.

Hello I’ve been on ivabradine for the past two and a half weeks. It seems to be working/ helping my pots I’m walking around I started off wheelchair bound and it reduced my heart rate. However these past two days I’ve been more tired than usual ( I had precut my ivabradine pills for a week last Monday ) since I have to take 2.5 mg twice a day. I looked up if these have any effects and it says that if exposed to moisture or humidity the pills could lose there potency. I can’t think of anything different I’ve done . Maybe I’m just have a rough week, I know recover isn’t linear. Any tips?

Hello I’ve been on ivabradine for the past two and a half weeks. It seems to be working/ helping my pots I’m walking around I started off wheelchair bound and it reduced my heart rate. However these past two days I’ve been more tired than usual ( I had precut my ivabradine pills for a week last Saturday ) since I have to take 2.5 mg twice a day. I looked up if these have any effects and it says that if exposed to moisture or humidity the pills could lose there potency. I can’t think of anything different I’ve done . Maybe I’m just have a rough week, I know recover isn’t linear. Any tips?

Does anyone with pots have chest discomfort/ache with heart flutters . I’ve been experiencing it on and off again for the past two days and I don’t want to have to make a trip to the ER. Ice seems to help .

I was recently prescribed metoprolol for pots 25 mg once a day. I’ve been on the medication for almost 2 weeks . I’ve noticed it is definitely helping with my tachycardia- so my heart rate is jumping when I stand but I am still lightheaded and getting pre syncope. Is the medication supposed to help with that? My doctor also told me to message him if it makes my symptoms worse. I wouldn’t say that my symptoms are worse I just haven’t noticed a big improvement with the lightheadedness.