Tingling head/ pulsating leg/

[Bailee]

I’ve been doing some research on my pot’s because I have a virtual appointment with my doctors coming up and I would really like to get some more answers than I’ve been getting. Although I understand pots is complex. My doctors keep upping my midrodrine now I am on 5 mg x 3 a day. Despite blood pressure remaining stable I am still getting fatigued and somewhat orthostatic intolerant when walking. Doing leg stretching with band, salt tablets, etc.Doctors keep saying deconditioning but my family suspects something may be adding to my pot’s symptoms. When I was started having pot’s symptoms after a year and a half of no symptoms it was after I had undergone breast reduction surgery, the recovery left me very fatigued. During my pots discovery and diagnosed my ANA and RNP were positive. I guess I’m just wonder if my there is an underlying cause contributing to my pots. My neck and spine are constantly in pain ( I have a small hump on the top of my spine that I get from my mother). Along with the struggle with fatigue/Orthostatic intolerance when walking and moving despite blood pressure being stable when taking vitals. Lately my head has been tingling which I know is s side effect from the midodrine but it only occurs when I’m up walking and moving my body like for example trying to meal prep in the kitchen. The head tingling follows the disorientation/brain fog which makes it hard to remember what I’m looking for in the kitchen. My parents even say I get glossy eyed. Lastly my legs and feet has been pulsating? Like when I’m laying down I can feel the blood thumping? Any advice doctors can’t give me an answer just keep saying for the past 6 months do exercises which I have been doing religiously 10 mins elliptical/15 struggle of a treadmill walk/ and then my leg exercises. I just would like a plan of action if the “deconditioning” isn’t getting better since I’m still struggling. Also forgot to mention it’s like my abdominal muscles stop working taking fiber , drinking water, upright activity and still can’t go no matter what having to take laxatives to go. I thought maybe autonomic neuropathy/small fiber neuropathy because QSART should diminished sweating distal leg but skin biopsy was negative.

[Pistol]

7 hours ago, Bailee said:

Despite blood pressure remaining stable I am still getting fatigued and somewhat orthostatic intolerant when walking.

@Bailee what is your HR when you feel like this? 

 

7 hours ago, Bailee said:

Any advice doctors can’t give me an answer just keep saying for the past 6 months do exercises which I have been doing religiously 10 mins elliptical/15 struggle of a treadmill walk/ and then my leg exercises.

I am severely exercise intolerant, despite being stabilized on meds ( that means I dont pass out anymore, but all other symptoms are still there ). What I have learned is that upright exercises make my symptoms worse, especially the fatigue and brain fog. I count the time I am upright to do chores as my upright time, but my exercises are done on the rowing machine ( I can move all my muscles while sitting ). I admire your stamina to do that much upright exercise, but it could be too stressful for your body. Maybe a recumbent bike or other exercises could be more beneficial? Also, try to rest before and after exercises. For me it is better to do shorter stints on the machine twice a day than one long period. 

 

7 hours ago, Bailee said:

During my pots discovery and diagnosed my ANA and RNP were positive. I guess I’m just wonder if my there is an underlying cause contributing to my pots

My autonomic specialist told me in 2020 that they found evidence that POTS is - in some cases - directly related to the innate immunity. Here is an article that may interest you 

New research adds to evidence that POTS may be an autoimmune disorder (medicalxpress.com)

8 hours ago, Bailee said:

The head tingling follows the disorientation/brain fog which makes it hard to remember what I’m looking for in the kitchen. My parents even say I get glossy eyed.

I know this feeling, and for me it is presyncope, which is the period before I pass out. It is directly related to not enough blood reaching the brain. The fact that this happens when you upright would also lead to that conclusion. Again - what is your HR when this happens? 

 

8 hours ago, Bailee said:

Lastly my legs and feet has been pulsating? Like when I’m laying down I can feel the blood thumping?

This happens to me when my blood vessels are too dilated. The heart pumps harder ( not necessarily faster ) because there is less resistance. 

IMO what you describe sounds like unstable POTS, meaning you are not controlled on the Midodrine. I took Midodrine many years ago, when I first was diagnosed, but it did not help me. You may want to make a list of all these symptoms and go over them when you have your appointments. Best of luck!

[Bailee]

2 hours ago, Pistol said:

@Bailee what is your HR when you feel like this? 

 

I am severely exercise intolerant, despite being stabilized on meds ( that means I dont pass out anymore, but all other symptoms are still there ). What I have learned is that upright exercises make my symptoms worse, especially the fatigue and brain fog. I count the time I am upright to do chores as my upright time, but my exercises are done on the rowing machine ( I can move all my muscles while sitting ). I admire your stamina to do that much upright exercise, but it could be too stressful for your body. Maybe a recumbent bike or other exercises could be more beneficial? Also, try to rest before and after exercises. For me it is better to do shorter stints on the machine twice a day than one long period. 

 

My autonomic specialist told me in 2020 that they found evidence that POTS is - in some cases - directly related to the innate immunity. Here is an article that may interest you 

New research adds to evidence that POTS may be an autoimmune disorder (medicalxpress.com)

I know this feeling, and for me it is presyncope, which is the period before I pass out. It is directly related to not enough blood reaching the brain. The fact that this happens when you upright would also lead to that conclusion. Again - what is your HR when this happens? 

 

This happens to me when my blood vessels are too dilated. The heart pumps harder ( not necessarily faster ) because there is less resistance. 

IMO what you describe sounds like unstable POTS, meaning you are not controlled on the Midodrine. I took Midodrine many years ago, when I first was diagnosed, but it did not help me. You may want to make a list of all these symptoms and go over them when you have your appointments. Best of luck!

My heart rate is stable within the 45 resting and 70 - 80 active due to the ivabradine. Thanks for the advice 

[MikeO]

@Baileedefinitely bring a list of your symptoms to your next visit and very decisive as to what you are feeling. If the Doc tries to dismiss any of them push back and say NO (like the deconditioning response you have had).

resting hr is a bit low but not unreasonable for someone your age or while sleeping.

Have you had any other workups looking for some other underlying conditions? I have had a ton of tests done but by chance we stumbled on that i go hyperglycemic for a couple of hrs after eating. Normal fasting glucose/AIC test would have never pickup on it. Not saying you have a diabetic problem, guess the point is a few more rocks may need to overturned. 

[Bailee]

4 hours ago, MikeO said:

@Baileedefinitely bring a list of your symptoms to your next visit and very decisive as to what you are feeling. If the Doc tries to dismiss any of them push back and say NO (like the deconditioning response you have had).

resting hr is a bit low but not unreasonable for someone your age or while sleeping.

Have you had any other workups looking for some other underlying conditions? I have had a ton of tests done but by chance we stumbled on that i go hyperglycemic for a couple of hrs after eating. Normal fasting glucose/AIC test would have never pickup on it. Not saying you have a diabetic problem, guess the point is a few more rocks may need to overturned. 

Only thing I can think that they’ve checked was the some blood test came back associated for connective tissue disease antibodies . RNP anntibody  was positive .I’m wondering if that could be a component. I’m constantly complaining about my right knee after exercise biking or walking. Along with upper body scapula and upper spine pain . Addressed this with the doctor he said we’d do a follow up but that was almost a year ago and I have only been doing virtual visits due to the hospital being 3 hours away from me. I’ll make sure to bring it back up to him.