I Am Freaked Out...

[juliegee]

PS would you mind explaining what problems you've been experiencing with exercising? I, too, have been working out 3+x/week for about 4 years, and am in really good shape, but recently I've been having problems after exercising (new cardio says it's related to dysautonomia and I need more salt). Now I'm scared to exercise; it's like my body is not "winding down" correctly after exercising-my heart starts racing, or isn't slowing down, and I go into a panic attack/seizure/whatever (if I don't salt-load).

Your thread is interesting because I hadn't realized others had concerns re left ventricle failure. Some reading I've done has pointed to maybe some problem there. What kind of tests did you have to diagnose that? I'm waiting for my results from the heart monitor (I asked for a copy of the report AND the raw data-we'll see if I get both....).

My problems are not like yours. My Mother, with dyautonomia, has the same issues you describe, however. If salt helps; by all means do it...BUT if you have weird stiff with diastolic dysfunction; salt is contraindicated. I'm thoroughly confused about that myself. I have a cardiologist appt on 1/4 to sort this out.

My exercise problems seem to be trouble getting enough oxygen. I just had a test at the Rheumy's where after 6 mins of walking (not running) my oxygen levels were at 80%- no wonder running has been seeming harder- DUH. I'm trying to sort all of that out. I do know that exercising is super important with APS because I am already at a high risk for a heart attack- any plaque in my arteries just magnifies that. So, I have to do it- just not sure how much or what kind is safest and best for me now. I just ran 3 miles this AM- a little slower than usual- loved it Heart failure??? can be fun

Julie

[Friedbrain]

MM,

sorry, I read the thread but did miss the reference to APS. I have had assorted positive auto-antibody tests over the past 16 ys, some come and go. For a while I was close to a lupus diagnosis, but ended up with an APS diagnosis. I have had Hashimoto's since a kid, so when I had a miscarriage 17 ys ago, I demanded they test me for anti-phospholipid abs (because I knew the risk was increased in people with anti-thyroid etc antibodies)-which were positive. I've also had positive ANA etc. I have a diagnosed "adrenal insufficiency", and my endo just tested to see if I have adrenal antibodies (she thinks I probably do, not that it really matters except that I was asking her questions about the diagnosis of primary vs secondary/tertiary), but I won't know until later this week what the results were. Huh, don't like thinking about sticky blood-scary enough to make me start taking my aspirin, so I guess I should thank you for that image

If you figure out the contraindication for salt, please let me know! The day I did try salt-loading (right after the cardio told me to), I felt AWFUL that evening!!! I was so shaky and near seizure that I was scared and had trouble sleeping the entire night. Haven't done that since. I need to figure out what doctor to talk to about that before I go trying it again. My dh is temporarily living out of state, so I am now alone at night. Therefore, I have to be extra careful about not rocking the boat since he's not here if something goes wrong! I'm only increasing my salt when I exercise, because that seems absolutely necessary. But aside from that, I don't even want to start the florinef (that the endo gave me) until I know and understand more. Thanks.

[cordellia]

dear julie,

your good counsel and kind words soothe and inform...

when i see that watermelon slice i know that something

very worthwhile will follow... you are a beacon.

you light candles with every syllable.

hoping that your path leads to healthful place--and the

right answers.

please know that my family and i are holding you

in our thoughts. my father, who has grown very

fond of you--on the page-is praying for you.

cordelia

[juliegee]

Thank you so much for the kind words in your most recent post, Cordelia. They bring tears to my eyes. I've been meaning to reply to you, specifically. Thank you for sharing your experience. Yes, I've had my BP plummet with BB's too. AND any BB or CC blocker seems to mess with my mast cell stuff. It's acting up big time now and I'm wondering if that isn't contributing to my oxygen deprivation. I also plan to explore yogic breathing, and even biofeedback connected to my breathing. In stressful situations, I swear I forget to breathe- one of those autonomic/automatic things that is screwed up with me now, No mention of classification. I'm assuming stage one as A/E reversal is mentioned & the literature I've read says that indicates stage one. Your success story is an inspiration to me. You KNOW how scary this is, and it's only a small part of what I'm finding out about...

THANK YOU-

Julie

[anna]

Hi Julie,

Me again! I found this and thought it might be of interest!:-

"Genetic factors

Research into the genetic factors that are related to Hughes syndrome is still at an early stage, but it seems that the genes that you inherit from your parents may play a role in the development of the abnormal antiphospholipid antibodies.

While Hughes syndrome is not passed down directly from parents to children in the same way that other conditions are, such as haemophilia and sickle cell anaemia, having a family member with antiphospholipid antibodies increases the chances that your immune system will also produce them.

A study that was carried out in 2008 found that almost half of people with Hughes syndrome had a similar mutated gene, known as the STAT4 gene.

The STAT4 gene is also thought to play a role in other autoimmune conditions, such as lupus (which causes symptoms of fatigue, skin rashes and joint pain) and rheumatoid arthritis (which causes joint pain and stiffness). This may explain why some people develop Hughes syndrome alongside another autoimmune condition."

I have been thinking about this condition for some time now,as our family have some odd things going on that can not be explained by POTS alone.

Re pulse O2 just checked my daughters it was 93% she had been at the computer doing same Uni homework it seems that all my family get low O2 levels when we have been still too long. We also get low O2 levels when we exercise beyond our comfort level, oh joy!!

[cordellia]

hello julie,

someone gave me an oxygen/pulse finger meter--on my birthday.

never imagined that i would covet / appreciate such a thing...

it has helped me to quantify how and when my

ox-sat levels rise and fall. the device, as i am sure you

know, fits on any finger and quickly reads HR and ox-sat levels.

the daily info helped me to understand more fully what

actually occurs with regard to my oxygen sat.

? is your plasma sodium below 140 ?

bon courage tomorrow!

cordelia

[juliegee]

Really "oy vey" now-

The visit to the cardiologist was a bust. "Yes, you have stage one diastolic dysfunction (heart failure), but that happens with age, high BMI, high body fat, diabetes, and a sedentary life style." I tried to point out that I was only 48, my BMI is 19, my body fat around 23%, I'm not diabetic, and I run 15-20 miles a week." He NEVER heard me. In my opinion this would be concerning in a patient with all of those risk factors. In a patient with NONE of those risk factors, this should be HIGHLY concerning as it seems to point to a problem unrelated to risk factors.

I asked if this was more prevalent in patients with connective tissue disorders. He said "You'd have to see someone who specializes in connective tissue disorders. I don't." (BTW, medical literature is chock-full of info that diastolic dysfunction is more prevalent in patients with CTD.) Total waste of time. Anybody remember Eligiamore's story with diastolic dysfunction??? I think I just saw her cardiologist I have no answers about salt, exercise, etc.

I remain hopeful that my fabulous rheumatologist will know a cardiologist who treats complicated patients.

Julie

[Connie]

Hi Julie,

I am sorry you had a bad experience with the cardiologist. Sometimes I think if some doctors do not know what is happening or understand the disease/disorder, that the doctors blow off the patient. I much rather them tell me they do not know. My son's cardiologist, the one who diagnosed him thank goodness is too busy to see Dysautonomia patients and sometimes he can act the way the doctor you saw today acts. Anyway I am sorry you had to endure the appointment today. I feel like sometimes we see a lot of "toads" before we find a doctor to help us. I imagine you are getting more discouraged. Try to hang in there until you can find someone to help you. You will be in my prayers.

Hope

[juliegee]

Hi Julie,

I am sorry you had a bad experience with the cardiologist. Sometimes I think if some doctors do not know what is happening or understand the disease/disorder, that the doctors blow off the patient. I much rather them tell me they do not know. My son's cardiologist, the one who diagnosed him thank goodness is too busy to see Dysautonomia patients and sometimes he can act the way the doctor you saw today acts. Anyway I am sorry you had to endure the appointment today. I feel like sometimes we see a lot of "toads" before we find a doctor to help us. I imagine you are getting more discouraged. Try to hang in there until you can find someone to help you. You will be in my prayers.

Hope

THANK YOU for all of your encouragement, Hope- it helps

Julie

[comfortzone]

Hope you are doing okay ~

Just wanted to mention that as a nurse - forever the machinery spits out these diagnosis by computer and often they have nothing whatsoever to do with the truth of the issue at hand. We are taught to ignore what the print out reads if that makes any sense. In my own personal experience - I had a Top Ten University do an EKG that spelled out the horrors of an enlarged ventricle - dysfunctions here and there..... I made sure to get better control of my blood pressure after reading that - which is always good. But anyway had a whole batch of testing afterward and absolutely zero of it confirmed anything of what that EKG read/reads. So again I don't know if that helps or not - but the doc signed off on my EKG that he agreed with what the machine read and blah, blah, blah..... Only to have my other EKG's since read wonderfully normal. Granted I do have the obesity, the high blood pressure, the borderline diabetic numbers -- and I work on that as I can daily -- but even with all of that and EDS - my heart (thank God) is so far doing well - on meds sure - but even so -- I'm doing well....... I can only hope that doc didn't mention anything about heart failure pending due to dyastolic dysfunction because he truly didn't believe it true and perhaps had the same schooling I had that the EKG computer readouts and other high tech equipment readouts - some of it is there to ignore ... the test is for the physician or clinician to figure out for themselves...

Maybe it's that stage one dyastolic dysfunction is essentially as the cardiologist said as well.......after one has so many birthdays these things happen perhaps ~ seems he may agree with the machine? You don't put a lot of stock in his opinion so maybe you have a gut feeling that what he said is not accurate all the way around. It's sad to see so many clinicians get burned out on the rut of 'normal' problems that they totally disengage with the interesting ones they can learn and grow from - the reason hopefully they became a doc to begin with. Well I'm happy nobody is sending you off to an ER or taking you to an ICU -- whatever the issue is - it will be ironed out - I'm confident of this....there are some real intelligent physicians out there ~ your case is striking enough that anyone with a real vocation for "doctoring" would be honored and delighted to assisst you in diagnosing the issues and treating you appropriately -- I too will pray you get the answers sooner rather than later....

[juliegee]

hello julie,

someone gave me an oxygen/pulse finger meter--on my birthday.

never imagined that i would covet / appreciate such a thing...

it has helped me to quantify how and when my

ox-sat levels rise and fall. the device, as i am sure you

know, fits on any finger and quickly reads HR and ox-sat levels.

the daily info helped me to understand more fully what

actually occurs with regard to my oxygen sat.

? is your plasma sodium below 140 ?

bon courage tomorrow!

cordelia

Hi Sweet Cordelia!

What kind of pulse oximeter do you have? What has it shown you?

I don't know my sodium levels, but I will check when I get blood work back on 1/26.

BTW, my cardiologist DID say that if a patient had an echo once a week- some might show DD, some might not???? In an odd way, I found that encouraging

Thanks for your help-

Julie

[juliegee]

Hope you are doing okay ~

Just wanted to mention that as a nurse - forever the machinery spits out these diagnosis by computer and often they have nothing whatsoever to do with the truth of the issue at hand. We are taught to ignore what the print out reads if that makes any sense. In my own personal experience - I had a Top Ten University do an EKG that spelled out the horrors of an enlarged ventricle - dysfunctions here and there..... I made sure to get better control of my blood pressure after reading that - which is always good. But anyway had a whole batch of testing afterward and absolutely zero of it confirmed anything of what that EKG read/reads. So again I don't know if that helps or not - but the doc signed off on my EKG that he agreed with what the machine read and blah, blah, blah..... Only to have my other EKG's since read wonderfully normal. Granted I do have the obesity, the high blood pressure, the borderline diabetic numbers -- and I work on that as I can daily -- but even with all of that and EDS - my heart (thank God) is so far doing well - on meds sure - but even so -- I'm doing well....... I can only hope that doc didn't mention anything about heart failure pending due to dyastolic dysfunction because he truly didn't believe it true and perhaps had the same schooling I had that the EKG computer readouts and other high tech equipment readouts - some of it is there to ignore ... the test is for the physician or clinician to figure out for themselves...

Maybe it's that stage one dyastolic dysfunction is essentially as the cardiologist said as well.......after one has so many birthdays these things happen perhaps ~ seems he may agree with the machine? You don't put a lot of stock in his opinion so maybe you have a gut feeling that what he said is not accurate all the way around. It's sad to see so many clinicians get burned out on the rut of 'normal' problems that they totally disengage with the interesting ones they can learn and grow from - the reason hopefully they became a doc to begin with. Well I'm happy nobody is sending you off to an ER or taking you to an ICU -- whatever the issue is - it will be ironed out - I'm confident of this....there are some real intelligent physicians out there ~ your case is striking enough that anyone with a real vocation for "doctoring" would be honored and delighted to assisst you in diagnosing the issues and treating you appropriately -- I too will pray you get the answers sooner rather than later....

Thank you for your explanation & encouragement. I'm over it now- until I have to face it on 1/26 (Rheumy Appt). It's all words & mostly Greek to me I think we are ALL searching for THAT doctor you describe. I am blessed to have a smart inquisitive rheumatologist batting for me. My son also has a wonderful ANS doctor. Perhaps we've used up our allotment???

Hugs-

Julie

[comfortzone]

Hope you are doing okay ~

Just wanted to mention that as a nurse - forever the machinery spits out these diagnosis by computer and often they have nothing whatsoever to do with the truth of the issue at hand. We are taught to ignore what the print out reads if that makes any sense. In my own personal experience - I had a Top Ten University do an EKG that spelled out the horrors of an enlarged ventricle - dysfunctions here and there..... I made sure to get better control of my blood pressure after reading that - which is always good. But anyway had a whole batch of testing afterward and absolutely zero of it confirmed anything of what that EKG read/reads. So again I don't know if that helps or not - but the doc signed off on my EKG that he agreed with what the machine read and blah, blah, blah..... Only to have my other EKG's since read wonderfully normal. Granted I do have the obesity, the high blood pressure, the borderline diabetic numbers -- and I work on that as I can daily -- but even with all of that and EDS - my heart (thank God) is so far doing well - on meds sure - but even so -- I'm doing well....... I can only hope that doc didn't mention anything about heart failure pending due to dyastolic dysfunction because he truly didn't believe it true and perhaps had the same schooling I had that the EKG computer readouts and other high tech equipment readouts - some of it is there to ignore ... the test is for the physician or clinician to figure out for themselves...

Maybe it's that stage one dyastolic dysfunction is essentially as the cardiologist said as well.......after one has so many birthdays these things happen perhaps ~ seems he may agree with the machine? You don't put a lot of stock in his opinion so maybe you have a gut feeling that what he said is not accurate all the way around. It's sad to see so many clinicians get burned out on the rut of 'normal' problems that they totally disengage with the interesting ones they can learn and grow from - the reason hopefully they became a doc to begin with. Well I'm happy nobody is sending you off to an ER or taking you to an ICU -- whatever the issue is - it will be ironed out - I'm confident of this....there are some real intelligent physicians out there ~ your case is striking enough that anyone with a real vocation for "doctoring" would be honored and delighted to assisst you in diagnosing the issues and treating you appropriately -- I too will pray you get the answers sooner rather than later....

Thank you for your explanation & encouragement. I'm over it now- until I have to face it on 1/26 (Rheumy Appt). It's all words & mostly Greek to me I think we are ALL searching for THAT doctor you describe. I am blessed to have a smart inquisitive rheumatologist batting for me. My son also has a wonderful ANS doctor. Perhaps we've used up our allotment???

Hugs-

Julie

I love that you have a rheumatologist that is proving to be rather brilliant in her assessments and observations etc... Truly it was a rheumatologist that initiated my investigation into joint hypermobility. I had absolutely zero knowledge of it -- In me or as a health concern. How funny to have all these joint replacements - hurt from head to toe in midlife - and have this doctor I had just met (after seeing 3 other rheumatologists without ideas or answers) simply ask me how far I could bend my pinky and my thumb LOL.... I was like ????????????? Hahaha! What does that have to do with the price of tea in China kind of thing.... Then she checks elbows, knees etc... I mean I was not at all athletic or graceful - quite the opposite - yet here I was as bendy as gumby at over 50 years old and never - ever knew it or suspected it.

So yes -- you are so very intelligent and articulate - I am praying you will continue to meet the docs that are as bright and inquisitive (as you) & as they need to be to tease out the best diagnosis and life plan ~ You are one amazing person from what I've read and am happy to meet you here.

I got to thinking the other day that my "New Year" was ruined on January 1 - when a doc calls ON New Years day and leaves a voicemail that I need a neck fusion at three levels or I'll be a quadrapalegic.... I had hoped for a "ignore health issues" and get on with life year. But ultimately I had the wrong focus I think. I am absolutely to be grateful for all my blessings - that I'm alive to have a New Year - and that my attitude is likely everything. So I did a quick about-face and decided I'm happy I have a brain to make decisions in my health care (which is no to surgery lol) - and that life always has speed bumps and rough patches - so I need to turn this around stat - and smile at the absurdity as best as possible - enjoy my day today and everyday without letting the cloud of poorish health to blanket me in sadness or despair. I believe 2011 will be our best year yet -- deep down I'm beginning to understand that my true happiness cannot be based on the ups and downs of health, finances and all the other stuff I've worried myself sick over. Maybe I'm a bit old to learn this - but truly I haven't had these challenges before.... so on we go! :-)

Hang in there -- Persevere -- your intution, gut feelings and keen intelligence will help you get to the bottom of this.... proud of you!

[juliegee]

I love that you have a rheumatologist that is proving to be rather brilliant in her assessments and observations etc... Truly it was a rheumatologist that initiated my investigation into joint hypermobility. I had absolutely zero knowledge of it -- In me or as a health concern. How funny to have all these joint replacements - hurt from head to toe in midlife - and have this doctor I had just met (after seeing 3 other rheumatologists without ideas or answers) simply ask me how far I could bend my pinky and my thumb LOL.... I was like ????????????? Hahaha! What does that have to do with the price of tea in China kind of thing.... Then she checks elbows, knees etc... I mean I was not at all athletic or graceful - quite the opposite - yet here I was as bendy as gumby at over 50 years old and never - ever knew it or suspected it.

So yes -- you are so very intelligent and articulate - I am praying you will continue to meet the docs that are as bright and inquisitive (as you) & as they need to be to tease out the best diagnosis and life plan ~ You are one amazing person from what I've read and am happy to meet you here.

I got to thinking the other day that my "New Year" was ruined on January 1 - when a doc calls ON New Years day and leaves a voicemail that I need a neck fusion at three levels or I'll be a quadrapalegic.... I had hoped for a "ignore health issues" and get on with life year. But ultimately I had the wrong focus I think. I am absolutely to be grateful for all my blessings - that I'm alive to have a New Year - and that my attitude is likely everything. So I did a quick about-face and decided I'm happy I have a brain to make decisions in my health care (which is no to surgery lol) - and that life always has speed bumps and rough patches - so I need to turn this around stat - and smile at the absurdity as best as possible - enjoy my day today and everyday without letting the cloud of poorish health to blanket me in sadness or despair. I believe 2011 will be our best year yet -- deep down I'm beginning to understand that my true happiness cannot be based on the ups and downs of health, finances and all the other stuff I've worried myself sick over. Maybe I'm a bit old to learn this - but truly I haven't had these challenges before.... so on we go! :-)

Hang in there -- Persevere -- your intution, gut feelings and keen intelligence will help you get to the bottom of this.... proud of you!

"Well, Happy New Year to you too, doc!" Didn't you want to leave that voice mail on his phone. How awful and unprofessional! I love that a rheumy was the one who helped you most too. I had such low hopes for this appt. I read this doctor's health grade on the internet and saw such discouraging stuff- like 3 & 4 hour waits, etc. Well, now I know why. When she finds a true puzzlement- like me- she does her job and tries to figure me out. She must have spent 2 hours with me & her staff spent another hour. I'm sure there were unhappy patients in her waiting room that day too

I hate what you are going through. I will search out a thread I think I saw you post to learn about it & comment there. You are so right about being grateful and not letting this stuff define you. With all of the scary stuff I've heard lately, I keep telling myself- You are not a body. You are a SPIRIT Thank you for the encouragement. It means a lot right now. Back at YOU!

Hugs-

Julie

[Sushi]

46 minutes ago, AutumnRose said:

I was officially diagnosed with POTS in December 2019. Just a few days ago I looked over my echo and have what appears to be grade 1 diastolic dysfunction. My cardio never told me. I was under the impression the tests were normal. He told me to drink tons of water and load up on salt, which seems counterintuitive. 

First question: how were you diagnosed? Diastolic dysfunction is very common in this patient group and grade 1 is very low. It just seems to come with dysautonomia and/or ME/CFS. I have it too. It is also a good idea to add electrolytes and there are many formulas available for this. Most dysautonomia patients have low blood volume and the extra fluids, electrolytes and salt will help increase blood volume as they help you to retain fluids rather than peeing them out. Many of us also wear compression garments to help with symptoms. I find compression knee socks particularly helpful and wear them at all times. 
 

It is very hard to pin down causes for dysautonomia although there is evidence that POTS is associated with certain autoimmune markers. There are a lot more markers than ana though they are only tested at a few places—Mayo and a lab in Germany,  I believe..

54 minutes ago, AutumnRose said:

The first piece of advice given - to at least stop it from progressing - is to lower bp with medication. My bp dropped to 79 over 31 after just 12 mg. of metoprolol last week. 

That is very low.  Metropolol  is a beta blocker and will lower both BP and HR. There are many other beta blockers and if you are going to take one, you might ask your doctor to let you try some of the others until you find one that suits you—or ask to try an even lower dose. I can’t take metropolol for genetic reasons and take another one. I’m not sure that a beta blocker will do anything more than relieve symptoms—but you do want to reduce symptoms. There are also many other drugs that help with symptoms so, at some point, you may want to consult a doctor who specializes in dysautonomia as most doctors won’t know how to treat it—even cardiologists. Best wishes with this! I know it comes as a shock but good treatment should make you more comfortable. Sorry that we can’t point you to a cure!

[Guest KiminOrlando]

On 1/18/2020 at 4:29 PM, AutumnRose said:

 

I am ana positive (low titre last time it was checked, but I never followed up with a rheumy), and wonder if some hidden condition is causing all this.

You may want to follow up with a Rheumatologist, but one at a university hospital if at all possible. IMO there is an autoimmune component to some of this and since you have a positive ANA, it sounds like this may be you. I can tell you my dysautonomia is better when I am on meds for my autoimmune disease. Many Rheumatologists may not take your case seriously because of your low titer, so finding one that understands the link to POTS is the trick. That is why I recommended a university hospital. 

Hope you find the right people and get in a good routine. 

[p8d]

I agree with @KiminOrlando.  I have a positive ANA, saw a good rheumatologist and started treatment which was the first thing that helped although not labile BP. Eventually he agreed with my neurologist and cardiologist that immunoglobulin therapy was warranted. I also had the Celltrend test (Germany) which came up positive.  There’s a LOT of recent literature showing a link to autoimmune markers for many of us.  

[Sushi]

13 hours ago, AutumnRose said:

If the DD stays at Grade 1, okay, but I'm concerned that all the excess salt may exacerbate it.

I talked with both my EP and the interventional cardiologist who repaired my mitral valve about salt and both said to take a lot of salt because of the hypovolemia and the OI. The interventional cardiologist had confirmed the low blood volume during the procedure. He just said to keep an eye out for puffiness or swelling in my ankles and feet—I have none.