Bailee

Thank you! I’m doing so much better! I’m walking my dog doing exercises 3 times a week. I really appreciate your support and this page , don’t know what I would do without it!! 

Tips for newly diagnosed? My cousin was recently diagnosed with pots. I’ve been dealing with it for couple years. What advice should I give her? Is there anything you might have wanted to hear or any advice that may have helped in the early stage of your journey? Any tips that made management of a chronic condition easier?

Hello I had a pots question. I recently started physical therapy which has been great. The physical therapist has a daughter with pots. We’ve really been working on getting exercise without my heart rate spiking about 80-100, doing slow isometric movements with recumbent bike which is different from the plan I was given by my doctor to walk with 125 bpm heart rate 15 min a day a struggle honestly. However we are noticing my oxygen drops when I walk. When I first come in to see her she checks it it’s low 90’s. Today when transitioning from the workout area to the bike area while walking it dropped again 98-94. It’s constantly low when I first come to see her as she checks my vitals. Her theory is that it happens when I walk which could explain why I struggle with symptoms and fatigue with walking. Does this happen to anyone else. We tried to different pulse oxygen machines to make sure it wasn’t the equipment same thing keeps happening.

1 hour ago, Pistol said:

@Bailee I was prescribed physical therapy to prevent deconditioning when I was at my worst, and mostly bedbound. The PT at that time was very knowledgeable about the ANS, although he was not necessarily informed about dysautonomia. However - physical therapy is geared towards keeping muscles and joints at their best, so all the Ins-and-Outs of our condition are not necessarily a MUST to know, at least IMO. I learned exercises that I still, years later, come back to because they work to keep me from becoming stiff and lazy when I am not feeling good. Physical Therapy can be a GREAT tool for us to manage our symptoms, whether the therapist knows all of the intricate details of dysautonomia or not. 

Is there anything you told the physical therapist specifically. Because I called a center near me and i told them I had a referral from my doctor me she wrote pots to strength my legs and conditioning the lady who answered was confused and said they need her to specify what I needed done 

Has anyone had any luck with physical therapy? My doctor wants me to do physical therapy but  I want a physical therapist that specializes or somewhat knows what pots is? 

Could my ivabradine be contributing to my lightheadedness/fatigue. I know beta blockers can cause lightheadedness and fatigue even though with pots you still deal with those symptoms? Ivabradine is helping but lightheadedness still there

My sister keeps insisting that I try the natural route of medicine to cure my pots . I’ve been very apprehensive due to her inability to provide me with proper research regarding natural medicine helping my autonomic nervous systems in the same way midodrine and ivabradine does. I asked her what is a natural alternative to beta blockers she couldn’t give me an answer just that plants can provide same benefits as the synthetic medication I’m taking. I’ve tried to explain to her I’m comfortable with taking medication as it’s my body not hers but she won’t back down. Any advice? Has anyone cured their pots ??

Thank you to everyone for the suggestions. I have been checking my blood sugar with a meter everything has been relatively stable/normal. So I’m thinking it’s just unfortunately the Orthostatic intolerance/pots.

I’m trying to see if my blood sugar is dropping when I stand/walk around. Was trying to do some holiday organizing/cleaning. Got lightheaded, shaky/tremor, hot flashes, confused. I checked my vitals blood pressure wasn’t dropping. I know with pots you can feel lightheaded despite vitals but can the irregular autonomic nervous system be affecting my blood sugar. Or is this just Orthostatic intolerance?

I have an appointment on January 17th. I just wanted some guidance on what to ask ? Or if others have had similar experiences? My doctors have been saying deconditioning for a year, despite being on a cardiac plan and meds. I’m a year into my diagnosis and q year on treatment/ medication. They told me in June that they couldn’t give me answers as to why I’m deconditioned or how long typical deconditioning last. My most prominent and life altering symptom is my lightheadedness/orthostatic intolerance. When I’m out with family or even cooking at home I don’t have the stamina to do daily activities despite being on midodrine 5mg 3 x a day, ivabradine 1.5 mg a day, salt 8 grams a day, compression socks, and leg strengthening exercises. I’ve tried metoprolol which decreases my blood pressure to much. The midodrine helps with energy but I still feel awful even when my blood pressure is normal (I’ve been keeping track). My QSART was abnormal but biopsy said no small fiber neuropathy. I’m just at a standstill as I’ve tried most of the meds they can give me at the clinic so I’m worried there’s nothing they can do .

Anyone have chronic upper back pain. I’ve been having bad back pain with twitching all over my body. All levels normal according to pcp have to wait to see neurologist until January 16 unfortunately. 

Update: I’ve also noticed that the twitching is more intense after my walking treadmill workout. My legs and thighs will start twitching like crazy almost like the nerve signals are firing rapidly. It last about 45 minutes to an hour. I also noticed I get almost like blood rush or pulsating feeling up my spin afterwards when I’m sitting and recovering.

Been experiencing twitching for the past 2 months. Say my pcp and she ran labs only thing low was my alkaline phosphatase and blood urea nitrogen (b.u.n) advised me to see my neurologist if everything came back relatively normal. Is this a pots thing? Not like tremors or spasms but like a nerve signal tapping making my leg and all randomly throughout my body. Not painful but annoying. 

Anyone know which is better for chronic illnesses? Walgreens vs a local neighborhood pharmacy? I only have 4 prescriptions all 90 day supply. Trying to pick between the two. Walgreens is more convenient but in the past at a different location I had trouble with colanor prescription when I call to refill saying they can’t find my prescription? Don’t know if this is different at different locations? Found an accredited pharmacy 5-11 minutes away from me. Seems very community driven with great reviews praising staff. Think I know which is better but would like to hear what route other people go/ other experiences?

I’m on midrodine 5 mg x 3 a day. I know tingling is a side effect. But I only get tingling when I’m walking /moving upright and dizzy. Like for example when I’m trying to cook and moving around in the kitchen the tingling sensation comes on. Is this normal to only have tingling when upright and lightheaded 

Was having my care overseen at Cleveland Clinic asked about sending in bloodwork to get levels checked due to twitching all over my body and the nurse said to get it done with a pcp and that a pcp should be taking care of my bloodwork however my doctor hasn’t had a problem in the past getting blood work sent to Michigan for me. My doctor was supposed to be checking my bloodwork while I’m on my colanor  medication. The doctor also canceled a very important virtual appointment I had scheduled three months in advance due to concerning symptoms I had. I was told a scheduler would contact me back  to reschedule. It’s been a week and I’ve heard nothing.  I’m just sick of being dismissed. Is this a normal response from doctors to patients? I’m I just being a difficult patient?

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.

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 

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.

Thank you to everyone who gave advice talked to my doctors he wants me to take midrodine 5 mg x 3 a day. I had my appointment with the balance test and audio test for vestibular testing. There’s nothing damaged with my inner ear or inner ear nerves. Still have an apportionment with an otolaryngologist to look at my neck and brain hopefully I get answers for the woozy / disoriented/ dizziness.

On 9/20/2022 at 9:47 AM, MikeO said:

@Baileeif by chance you do consider a new BP monitor i would suggest one that is Bluetooth enabled that way you can run an app on your smart phone to capture the readings and easily add notes. I have found it more convenient as well as being able to analyze the data. 

Omron has one that goes for around $79.00 i bought a Oxiline (more pricey) $120.00. For the phone app i use MedM. MedM also has a web portal that is free where you can pull more reports.

 

Thank you I have a Bluetooth one that my mom just got me. I’ve been taking measurements 2 x a day for the past 2 days. I’m noticing even when my blood pressure doesn’t drop as much I’m still symptomatic especially when standing. My doctor have me lying down for 5 minutes, sitting for 5, and standing 10. However I can’t make it to the ten minute mark and am struggling trying to keep myself conscious at the 5. I don’t know if it’s the blood vessel in my legs not constricting enough, if my blood can’t get to my head /reduced blood flow/low cardiac output, or if I’m getting flooded with adrenaline. I’m just always symptomatic walking or standing high , normal , or low blood pressure?I’m gonna ask my doctors about this. I’m wondering why I’m getting the lightheadedness considering I’m on midrodine 3 x a day 2.5 mg. 
 

here are the measurements 

Laying down 5 minutes 

HR: 60

Blood pressure ; 114/81

Sitting 1 minute : 

HR: 59

Blood pressure: 114/92

Sitting 5 minutes:

HR: 61

Blood pressure: 108/70

Standing 1 minute 

HR: 68

Blood pressure: 113/89

Standing 5 minutes

HR: 78

Blood pressure: 114/76

Standing 10 minutes 

HR: 

Blood pressure: had to take a break spaced out lightheaded 

Thank you to everyone who gave advice I’m going to contact my doctors and send them a message. I’ve been having bad palpitations today this was my systolic number should I be concerned ?

22 minutes ago, MikeO said:

Hi @Baileejust my feeling i think you need to make a change in meds (just my gut feeling). I do get like you are describing and have been pushing the envelope with my care providers but thankfully we are still at it. I was in at my dietitians appointment and as i was getting up i went presyncope. Felt bad for the dietitians intern she almost jumped across the desk to keep me from falling.

I would really ask your Doc's to trial you on another beta-blocker. ivabradine is a bit potent. My care team won't put me on this one.

   

Thank you for the reply? When I bring this up to doctors what beta blocker do you recommend or has worked for you. Does ivabradine cause lightheadedness?

I’m still having lightheadedness pre syncope despite my vitals being normal. My lowest was 105/71 heart rate 74. Highest after going up the stairs was 125/85 heart rate 96 this fluctuation occurred within 7 minutes. I was trying to cut up some snacks in the kitchen and I was already dizzy before but my blood pressure wasn’t bad. As I started to move around more I got dizzy but vitals not low. On midrodine which keeps my blood pressure from dropping low but I still have lightheadedness. The other day I was so symptomatic I had to use my wheelchair to go out with my mother I stood us to go to the car after exiting store and my blood pressure was 110/59. I don’t know what to do. Messaging my doctors and they are saying it’s deconditioning and could take time however it’s been a year since diagnosis and on ivabradine. most  days I can workout but the lightheadedness has been a persistent symptoms since I was 14 and the dysautonomia started. If I do complete my treadmill walking workout I’m wiped out for a couple hours. But walking around stores is hard for me , since I symptomatic. I’m taking in 100 oz water , 5000 mg salt, and I always wear compression knee highs when I go out. I don’t want to badger my doctors since I am a complicated patient but my quality of life is being effected. Better than it was before the diagnosis but I feel as if I’ve hit a brick wall. Any one know what to do? What I should ask my doctors?

On 9/6/2022 at 1:32 PM, MikeO said:

@Baileedo bring this up with your Doc. I also do well on the treadmill until i would turn my head (in cardio rehab) and talk to the person next to me. I would lose it. Few years ago i was in Luke Maryland and the work team took a visit to a top of a mountain. I became very dizzy and had to sit down. My Daughter also has episodes and we both have have cervical spondylosis. If you do look at a Chiro just be careful as to who you see. I have had bad experiences with them. If you do have have a cervical issue i would suggest more PT time (has helped me.

Doubt this helps you but the Doc consult IMO and some persistence hopefully will.

Best! 

Thank you for this I’m going for vestibular testing I believe it may have something to do with cervical or spine. I noticed when I get dizzy and disoriented if I don’t stop moving or sit I will eventually drop. I also have this constant pain and tightness in my neck /trapezius I have a massage machine but the pain always is there and gets worse when I get dizzy.