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.

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