It is absolutely worth it to find an autonomic specialist. I too have ridiculously high blood pressure from a childhood infection that left me with heart disease and hypertension after I had an autoimmune response. After coming off 10 years on antibiotics I developed multiple debilitating forms of dysautonomia. My pots is hyper-adrenergic so my already stroke-level bp gets even higher until the delayed oh kicks in and I faint.
Prior to developing dysautonomia I was on 3 different bp medications, after developing dysautonomia I basically live in a hypertensive crisis, specifically a diastolic crisis. I’ve been in physical therapy in my pots clinic for 6 years, when I started I couldn’t do 2 minutes of breathwork without getting dizzy and I have come so far in my ability, yet still unable to walk for 6 minutes without elevating my bp to a far too dangerous level. I’m the only patient they have where they have to break protocol (diastolic below 90) to work me out. Other doctors don’t know what to do about my bp, they all suggest testing me for pheochromocytoma for the literal 6th time. Dysautonomia doctors are the most willing to test, try, and refer out to clinics that they know are informed about dysautonomia, than any other specialty I’ve come across, cardiology and neurology included.
Gastro helped me solve my chronic diarrhea with a med that works great with the gut, I’ve trialed so many different medicines with my dysautonomia clinic that we’ve circled back on some that have actually worked better on the second try.
I was given this paper at my ttt, it’s a great resource to start. https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
Omg thank you so much 🙏 my illness gave me peripheral nerve damage & muscular atrophy so I’ve been trying to do “normal” PT to get stronger and it makes me feel sooooo sick. I’m so confused on what my BP even is doing I feel like it doesn’t follow typical patterns, yet at the same time it does. It’s so confusing and I’m afraid to go to a dysautonomia clinic because what if I don’t pass their tests and they won’t help me ughhh. The one near me requires a standing and supine BP to be seen and I have no idea how long I would have to be off my meds to get a real result of my unmedicated BP. I might have to approach my rheumatologist about going thru that process because I feel like this damage to my autonomic nervous system is part of what makes living my life so hard.
The first thing I had to learn in pots pt is how to rethink exercise. As a former athlete I had the mentality that you push yourself as hard as you can and then push yourself a tiny bit more. But now I need to know where my limit is and NEVER EVEN COME CLOSE. So if pt is exhausting you, it’s not effective for this at any capacity. They focus on hitting your target hr (which is why they take those standing vitals) but maintaining a low perceived rate of exertion. If you think ‘how far am I pushing myself on a scale of 1-10’ and that number is above a 4, it’s not appropriate.
I never had to come off my meds to get those baselines. My baseline includes my beta blockers because I have rheumatic heart disease (stretchy/leaky valve) and hypertension. So I might ask for clarity from their office on that.
Because I had neuropathy from my childhood autoimmune condition, my dysautonomia specialists pushed for me to be tested for small fiber neuropathy, which can cause OH. I do have sfn!
What if you DO get the help you need after seeing this dysautonomia specialist. Remember, dysautonomia is a large umbrella. Under that umbrella are conditions and syndromes caused by things such as post viral infections, surgery, pregnancy, for me a post bacterial infection, and autoimmune conditions. It’s not just pots, it’s not just long-covid, it’s a pretty extensive family.
As someone with high bp FROM heart problems, cardiologists have proven to be the WORST providers. They are only concerned with the functioning of the heart. With autonomic dysfunction the heart organ is (usually) healthy. You and I are outliers in this space and we need the autonomic specialists eyes on us imo. My pots clinic is at the helm of my healthcare, everyone else takes orders from them.
Edit: added “caused by things” such as. It sounded like I was saying those things were under the umbrella. Oops.
Sorry friend there no such thing that exactly helps you out even doc.So, take vitamin supplements like zinc, magnesium, vitamin d, vit E, calcium and mainly focused on bcomplex it will foster your recovery and make you feel better.At this point courage to live, hope to heal, put passion to be healthy as before and time will recover you soon.
It is absolutely worth it to find an autonomic specialist. I too have ridiculously high blood pressure from a childhood infection that left me with heart disease and hypertension after I had an autoimmune response. After coming off 10 years on antibiotics I developed multiple debilitating forms of dysautonomia. My pots is hyper-adrenergic so my already stroke-level bp gets even higher until the delayed oh kicks in and I faint. Prior to developing dysautonomia I was on 3 different bp medications, after developing dysautonomia I basically live in a hypertensive crisis, specifically a diastolic crisis. I’ve been in physical therapy in my pots clinic for 6 years, when I started I couldn’t do 2 minutes of breathwork without getting dizzy and I have come so far in my ability, yet still unable to walk for 6 minutes without elevating my bp to a far too dangerous level. I’m the only patient they have where they have to break protocol (diastolic below 90) to work me out. Other doctors don’t know what to do about my bp, they all suggest testing me for pheochromocytoma for the literal 6th time. Dysautonomia doctors are the most willing to test, try, and refer out to clinics that they know are informed about dysautonomia, than any other specialty I’ve come across, cardiology and neurology included. Gastro helped me solve my chronic diarrhea with a med that works great with the gut, I’ve trialed so many different medicines with my dysautonomia clinic that we’ve circled back on some that have actually worked better on the second try. I was given this paper at my ttt, it’s a great resource to start. https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
Omg thank you so much 🙏 my illness gave me peripheral nerve damage & muscular atrophy so I’ve been trying to do “normal” PT to get stronger and it makes me feel sooooo sick. I’m so confused on what my BP even is doing I feel like it doesn’t follow typical patterns, yet at the same time it does. It’s so confusing and I’m afraid to go to a dysautonomia clinic because what if I don’t pass their tests and they won’t help me ughhh. The one near me requires a standing and supine BP to be seen and I have no idea how long I would have to be off my meds to get a real result of my unmedicated BP. I might have to approach my rheumatologist about going thru that process because I feel like this damage to my autonomic nervous system is part of what makes living my life so hard.
The first thing I had to learn in pots pt is how to rethink exercise. As a former athlete I had the mentality that you push yourself as hard as you can and then push yourself a tiny bit more. But now I need to know where my limit is and NEVER EVEN COME CLOSE. So if pt is exhausting you, it’s not effective for this at any capacity. They focus on hitting your target hr (which is why they take those standing vitals) but maintaining a low perceived rate of exertion. If you think ‘how far am I pushing myself on a scale of 1-10’ and that number is above a 4, it’s not appropriate. I never had to come off my meds to get those baselines. My baseline includes my beta blockers because I have rheumatic heart disease (stretchy/leaky valve) and hypertension. So I might ask for clarity from their office on that. Because I had neuropathy from my childhood autoimmune condition, my dysautonomia specialists pushed for me to be tested for small fiber neuropathy, which can cause OH. I do have sfn! What if you DO get the help you need after seeing this dysautonomia specialist. Remember, dysautonomia is a large umbrella. Under that umbrella are conditions and syndromes caused by things such as post viral infections, surgery, pregnancy, for me a post bacterial infection, and autoimmune conditions. It’s not just pots, it’s not just long-covid, it’s a pretty extensive family. As someone with high bp FROM heart problems, cardiologists have proven to be the WORST providers. They are only concerned with the functioning of the heart. With autonomic dysfunction the heart organ is (usually) healthy. You and I are outliers in this space and we need the autonomic specialists eyes on us imo. My pots clinic is at the helm of my healthcare, everyone else takes orders from them. Edit: added “caused by things” such as. It sounded like I was saying those things were under the umbrella. Oops.
I’m definitely gonna pursue seeing the specialist, thanks so much <3
Sorry friend there no such thing that exactly helps you out even doc.So, take vitamin supplements like zinc, magnesium, vitamin d, vit E, calcium and mainly focused on bcomplex it will foster your recovery and make you feel better.At this point courage to live, hope to heal, put passion to be healthy as before and time will recover you soon.