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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.

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@Bailee -- I used to have my vision grey out when going from sitting to standing. Now I wear compression tights or knee highs at all times, except when sleeping. As long as I am wearing compression garments, this doesn't happen anymore. I don't take midrodine or anything else to help with my BP. I still get lightheaded if I am up on my feet for too long. On a good day I can cook dinner without getting lightheaded, but on other days I have to take a break or ask the hubby to take over. I find if I am able to exercise regularly I have better orthostatic tolerance too.

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5 hours ago, JennKay said:

Now I wear compression tights or knee highs at all times, except when sleeping.

This and electrolytes-fluids-salt is the most important factor for me. I could not function at all without compression knee-highs. On bad day, I’ll add an abdominal binder and wear higher compression knee socks. Gotta squeeze that blood back into the brain — and manufacture more of it with the fluids, electrolytes and salt.

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17 minutes ago, DysautonmiaMatt said:

Has your doctor checked your Aldosterone & Renin and vasopressin levels?

I do get the renin levels but  fludrocortisone comes with a black box warning i would avoid it. I would try the usual orthostatic maneuvers before throwing more drugs at it. Good Vitals (Data) when you feel symptoms will help your Doc sort thru what you are feeling.    

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I totally agree if a non-med treatment can take care of things it is better which is why I am trying a tri-Mg supplement to see if it takes care of my PVCs. So far heart rate has been more stable and no PVCs but only just started it. I know its not a great drug which is why my doc has me on the lowest possible dose that works for me. He has patients on it for years that do not have any issues but he is an Endo so see more that need it than say a cardio. Sometimes a drug can be used as a temp bridge while non-med treatments are done and then removed.  My Na used to be in the lowest part of range, now in middle part of range.

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On 7/30/2022 at 1:09 PM, MikeO said:

@Bailee by chance are you capturing vitals? BP and heart rate when you are feeling dizzy/lightheaded.

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.

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If you don't have a blood pressure machine I highly recommend you buy one so you can check your own BP anytime at home.  Omron is a good one. A pulse-Ox is another good thing to have to so you can check your O2 sat and HR when you feel dizzy etc. Maybe the Ivabradine is lowering your HR too much at times? Has your doctor tested you for B vitamin levels or iron? Some people report that an SSRI or Wellbutrin is helpful as well. Finding the right combo of meds is a trial and error process and takes some time.  

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On 7/31/2022 at 7:28 AM, RecipeForDisaster said:

You might want to try taurine for PVCs - I’m now on an anti arrhythmic, but it helped my palpitations and PVCs before they got worse! I think it does still help. I learned this here.

Been taking Taurine 2grams at night for a long time. What is helping is the Tri-Mg supplement. No palps/PVCs so far. 

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4 hours ago, Bailee said:

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.

May take some time to for your body to adjust to meds i have been here. Sounds like your bp and heart rate is good while at the clinic but seems you have symptoms outside of it (my vitals are always lower at home than when i am in the dr office). As suggested it is worth purchasing a home bp monitor. I have used the omron and are good but i just ordered a new one from Oxiline (wore the omron out).

At one point i did become deconditioned. Like you i would get winded/fatigued easily. I really had to double down on staying active and works (not perfect but much better)

I also had to make a number of med changes since 2019 which has helped as well. Might be something to look at if you continue feeling the way you do.  

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20 hours ago, Bailee said:

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.

@Bailee - this is a common symptoms of POTS and many of us struggle with it, it is often due to exercise and orthostatic intolerance. I have been disabled from POTS for 10 years and am by now pretty well stabilized ( compared ), but I still struggle with this. If I am around the house and can do something for 10 minutes and then rest I am fine. but if I have to push myself, like going to a store or appointment and cannot lie down as soon as the intolerance begins, I become very winded and fatigued and it usually takes a few days before I get back to my "normal". 

The best way to deal with this for me unfortunately has been trying to avoid these activities. Mostly I let my husband do all the shopping if I know I cannot afford to rest the few days after the shopping trip. I have found that planning is very important - if I know something is on the calendar that is important I will rest the day before and plan nothing the days after. Some of our symptoms cannot be "fixed", so we have to learn to live with them - we have to find a way to function despite of them. 

 

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  • 2 weeks later...

@Bailee - this happens to me as well. I can lie down and have a low BP, then stand up and have a normal BP. Or vice versa: I can lie down with a high BP and get up with a low BP. I can go all the way down to 80/45 or so, and not have any symptoms!

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I was just in to see my Cardiologist today and he is just as stumped as to my wide swings and or drops in bp's. I can tell you if i get into the 80/45 range i am probably having orthostatic issues.

@Baileehow are your vitals in the morning compared to the evening? I at least for now have been able to show a drop in blood pressure later in the day.

 1841231437_MedMBP(1).thumb.jpg.332e01a49f77565f4401e810d40deca6.jpg

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@MikeO Do your BP drops/swings happen around same time of day? 

@Bailee Your BP is on lower side and HR is a bit low but still in the normal average 60-100. Maybe talk to your doc about trying some liquorice vs fludo and see if it helps. Have you done some orthostatic measurements from sitting to standing to see what your BP is when dizzy/light headed. Propranolol is a very common beta blocker used in POTS and maybe that might be worth a try. 

I don't suffer from low BP or hypotension but I have Addision's and on full replacement of Cortef. When I was under-treated with Cortef I did have hypotension when standing and low BP when sitting/laying down. I have to wonder how many POTSies (especially those with low BP)  have cortisol deficiencies but are never diagnosed as long as serum cortisol is in range, even in the bottom of range in an AM blood draw. Many doctors do not know what optimal values are for many labs but instead just go by lab ranges even when clinical symptoms exist like low BP.  My best friend is fighting with her doctor on this because her BP is super low and she gets dizzy/fatigued when standing. I do not take salt tablets or have to eat a lot of salt in my food either.

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One of my doctors ordered a saliva cortisol test.  This test shows the cortisol curve over a day to see if it matches "normal". Mine was low all day which lead to an Endo and Addison's workup. The saliva test is done at home so your doctor could see if there is any relationship between your cortisol and BP readings.  Cortisol does influence BP as I personally experienced before treatment and when not enough Cortef was given or if I need to stress dose.

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Well my PCP and Cardiologist did the thyroid/adrenal testing just to rule out any issues. all can back as normal. We did recently switch to taking my amlodipine to the evening when i take my second round of meds. I need to track and log vitals/symptoms for the next week. What we are looking to do is ride out the drug high while i am sleeping (I do already notice it as i am again getting the 2 AM drop in bp hot flashes). While there is nothing that can be done to help my transient drop in blood pressures they feel we can do better in management of my meds. 

I have noticed that Caffeine (coffee) does help stimulate a rise in pressures i just don't want to be drinking it in the evening hours.

Below is an example. i took my 7 pm meds with a cup of coffee and my bp's rose.

1499581077_MedMBP3.thumb.jpg.e0e058b9a151a9f3bcaa29af6afd4048.jpg

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