Are these pretty much POTS symptoms? Just curious if people relate to these or not.....

[AB+72]

I would like to hear from you guys which symptoms you might have or relate to.  I realize some of you have it worse or better than I do, and we're all different.  But I'm just curious as to where I might have similarities to others struggling with this syndrome. 

So here we go: I'm brand new here and would like some input. I'm 46 and was diagnosed with POTS in 2009 after coming back from Mayo Clinic in Jacksonville. Where I pretty much failed the tilt table test. They didn't let me go all the way to fainting, but I was getting pretty light headed and all that. Until now I have managed with keeping my water intake up, and not staying on my feet for more than 1/2 hour at a time. I would like to ask if the symptoms I've dealt with are typical POTS symptoms.

1. Need to drink a good amount of water after getting up from sleeping. Otherwise my heart rate would be high all day long and feel like it doesn't want to relax.

2. A few times before I knew better I tried to move heavy things and afterward I felt like my heart just wanted to race away and never calm down again. This was early on of course and I learned to not be lifting heavy stuff any longer.

3. Can not stand and do jobs for more than a 1/2 hour without having the same symptom of never calming down. And lately it's been even less than that. This spring I've taken a turn for not the better, which is why I'm delving into more research.  And my ability to stand for even 1/2 hour has diminished greatly. 

4. Can't get a very stiff back rub or massage. Seems to torque me out and ramp up the heart rate.

5. When flying to and from Mayo Clinic, heart rate skyrocketed after the cabin pressurized. I was slamming water and taking metoprolol like crazy on the ride home.

6. Fatigue fatigue fatigue. Some days worse than others (this may be lyme disease too, which I also have. In fact I think that that is what caused the POTS.)

7. OCD / Anxiety / Panic attacks. This could be partly genetic and party mind is tired from all the problems.  And just other life stressors like money and change, and family issues. 

8. Stress makes symptoms worse. Which is my main issue this year I think.

9. Low pressure systems make me feel super lousy. Storms and such.

10. Full Moon in the winter, new moon in the summer makes me worse.

11. Kidney stones. Not sure that has anything to do with POTS. I started with those before I had POTS.

12. Feel better later at night.

13. A lot of food sensitivities.

14. Lack of feeling relaxed and lack of libido, at times.

My Cardiologist that has been treating me for POTS told me that most people don't get disability with just POTS dx. Which is kind of depressing because I have no clue how I could hold a job. Thankfully my wife has a very good job but we don't really have enough money from fighting all my issues over the years.

Thank your for listening and your input is much appreciated.

J.J.

[WinterSown]

POTS is not the only dysautonomia, there are over a dozen types. 

There is no such thing as passing or failing the TTT. It's a test to determine your body reactions. A diagnosis is made based upon your history, your current state, and how you respond to the test--the doctor and team of assistants are listening and watching you all the way. I never fainted, didn't even get close. 

This is a good page with descriptions of the many forms. What's to Know about Dysautonomia

[StayAtHomeMom]

Number 10 is an interesting observation. I may have to check that one out. Never noticed.

All your symptoms seem to center around adrenaline. Have you been tested for hyperPOTS?

And with a good lawyer I can't imagine disability would be totally denied. There has been comparisons that POTS is like have heart failure. (Don't remember the exact quote but I have seen it many times in my research). In fact there was a recent article on CNN (I think) that talks about an Eagle's player's wife has POTS and the comparison was in that article. 

My POTS doesn't seem to be as severe as some. My major symptoms are more in line with classic POTS and cycle. I manage OK with meds and avoiding triggers. I found a job working for a small business in the office that works with me weird days. But my job is definitely one in a million. 

Good luck!!

[AB+72]

4 hours ago, WinterSown said:

POTS is not the only dysautonomia, there are over a dozen types. 

There is no such thing as passing or failing the TTT. It's a test to determine your body reactions. A diagnosis is made based upon your history, your current state, and how you respond to the test--the doctor and team of assistants are listening and watching you all the way. I never fainted, didn't even get close. 

This is a good page with descriptions of the many forms. What's to Know about Dysautonomia

I apologize for saying I failed the test.  I feel like I failed it.  LOL.  I remember the gal working with me seemed......  like surprised that they got a person that had issues.  It was in Jacksonville and they had just put that wing and equipment in I guess........  At the time. (November 2010) 

They also tested me for sweating and breathing into a thing to keep up a certain amount of pressure. I got lightheaded doing that and didn't sweat.  It was like, what the heck, I'm messed up apparently.  And the Doctor had a fancy name for what he thought I had.  I thought he called it Reflex depressor syncopy.  Or something like that.  And then I got diagnosed by POTS by my EP when I got home.  I saw him with the recommendation of the Doctor at Mayo and I think they communicated. 

Well now after looking it up, maybe he was just saying that's what I did in the test.....  Vasodepressor Syncope.  Which I guess is a way to say fainting......

Anyways...  Thank you for the link.  It does look like many of my symtpoms are typical.  And yeah, mine I believe has been caused by Lyme Disease. 

 

 

[WinterSown]

13 hours ago, AB+72 said:

I apologize for saying I failed the test.  I feel like I failed it.  LOL.  I remember the gal working with me seemed......  like surprised that they got a person that had issues.  It was in Jacksonville and they had just put that wing and equipment in I guess........  At the time. (November 2010) 

They also tested me for sweating and breathing into a thing to keep up a certain amount of pressure. I got lightheaded doing that and didn't sweat.  It was like, what the heck, I'm messed up apparently.  And the Doctor had a fancy name for what he thought I had.  I thought he called it Reflex depressor syncopy.  Or something like that.  And then I got diagnosed by POTS by my EP when I got home.  I saw him with the recommendation of the Doctor at Mayo and I think they communicated. 

Well now after looking it up, maybe he was just saying that's what I did in the test.....  Vasodepressor Syncope.  Which I guess is a way to say fainting......

Anyways...  Thank you for the link.  It does look like many of my symtpoms are typical.  And yeah, mine I believe has been caused by Lyme Disease. 

 

 

Nothing to apologize for! So many people have been led to believe that only by fainting during  the TTT you will get a POTS diagnosis , I wish it wasn't that way. I think it's confusing to patients. And, lazy doctors are apt to not do their jobs/learn when working off of mythology instead of fact. Some organizations, I think,  do a disservice to the community and seem to promote POTS well beyond all the other dysautonomias. Many doctors, often short on time, read the first hits on the internet and wikipedia and seem to think that the criteria for POTS is the criteria for all dysautonomias and it can been used to exclude a patient from diagnosis. Syncope means fainting. My EP uses the his own hyphenated word; he says NeuroCardioVasoVagaly. I appreciate both his knowledge and humor with that because he knows it's so hard to point the finger at any one thing as being cause. He is very understanding of what a dysautonomia patient experiences. 

 

[AB+72]

I'm not exactly sure what you are saying.  Are you saying I don't have it, or I have a different type other than POTS?  I'm pretty sure I have a lot of the symptoms of some kind of dysautonomia.  One time when they used lidocaine with epinepherin my BP crashed big time.  And I've read in some places that epinepherin will do that to some people with dysautonomia.  Among other issues like needing to keep water volume up and no sweating and low bp.  Palpatations and swings in heart rate for several reasons that aren't normal.  Gut issues.  Problem with the pressurized cabin on a flight.  Etc etc. 

[ks42]

Yes to every single one of these except #4 and #11. And I do have HyperPOTS. They're looking for an underlying endocrine issue right now, but if that's not it, my cause is most likely Lyme disease, like you.

To give you some encouragement, I got disability with just a POTS dx, and I got it the first time I applied - I think it was a total of about 6-9 months from the time I applied to the time I received benefits. However, I hired a lawyer the first time through. This meant that they got a percentage of my back pay, but it was totally worth it. My lawyer was amazing, and I think had it not been for him, I wouldn't have won the first time through. I also had an amazing PCP who filled out a functional assessment for me (even though they didn't ask for it, it was really helpful for them to have on file and I think made a big difference). It's true that there is a list of approved diagnoses on the SSD list that basically receive automatic disability, no questions asked. It's a common misconception that if someone doesn't have one of these diseases, then disability is impossible. What happens is, if you don't have one of the diseases on their list, then you're given disability based upon your symptoms and how they affect your everyday life, as well as whether there are medications you can take that can enable you to work. So your ability to get disability just depends on how well documented your illness is (and how it affects your life) in medical records, etc., documentation that you have tried and failed the standard medications used to treat it, or that the meds haven't given you back enough functionality to work, things like that.

[WinterSown]

2 hours ago, AB+72 said:

I'm not exactly sure what you are saying.  Are you saying I don't have it, or I have a different type other than POTS?  I'm pretty sure I have a lot of the symptoms of some kind of dysautonomia. 

I think you do too. Keep plugging away at your doctors to get an accurate diagnosis. 

 

 

[AB+72]

Thank you for the replies. 

KS42, sounds like we may have a lot in common.  That makes me feel good.  I don't know what hyper POTS is and how you would know if you have it.  And I don't know what half the stuff is on the bottom of your page.  

All I know is I'm struggling more lately.  I personally think it's the changes of life, stress, humidity and other environmental factors (sinuses are swollen) etc etc....  Meaning, a whole bunch of stuff.  And I'm not quite sure how I'm gonna unbury myself at this point.  Right now I feel best when I'm just sitting, not doing much.   I'm just praying I can peel the onion and get back to what I was sometime....  

I miss feeling human. 

Thank you for the tips on disability.  It also makes me feel better.  I'm going to keep plugging away at it.  I'll entertain hiring a lawyer.  I stopped working in like 2010, so....  if they awarded me back pay, there probably would be a chunk....  I'm not really concerned about backpay though. 

[ks42]

1 hour ago, AB+72 said:

KS42, sounds like we may have a lot in common.  That makes me feel good.  I don't know what hyper POTS is and how you would know if you have it.  And I don't know what half the stuff is on the bottom of your page.  

Yes, it sounds like we do. HyperPOTS means "hyperadrenergic" which technically means the POTS is either caused by or accompanied by an increase in adrenaline levels (norepinephrine and/or epinephrine). Most people with HyperPOTS also have orthostatic hypertension, so blood pressure that goes up too high when standing, rather than blood pressure that drops. In order to test for HyperPOTs, they do blood draws to measure adrenaline levels while you're lying down and while standing. These patients still have the typical heart rate increase of at least 30bpm upon standing as well.

Sorry - I'll translate the info in my signature:

I tested positive for HyperPOTS in 2014. Most of the time, though, I don't have the increase in heart rate or blood pressure on standing that is characteristic of POTS, so I don't technically meet the criteria to be considered to have POTS anymore. This may be due to IV fluids and meds, or may be for some other reason. "Disabling hyperadenergic storms": I suffer hyperadrenergic storms which are where your body all of a sudden spits out a ton of adrenaline for no good reason, and it raises your heart rate and blood pressure like crazy, as well as causing a whole bunch of other unpleasant symptoms. The big ones usually require treatment in the ER. The only difference is, my storms aren't related to position. They can happen anytime - sitting, lying down, standing, sleeping, etc.

"Current dx just dysautonomia": My current diagnosis is just dysautonomia. My heart rate, blood pressure, and valsalva testing are abnormal, so there is definitely some kind of autonomic dysfuction, but we don't know what kind or what's causing it.

"Being re-evaluated for pheo" means that they think my autonomic dysfunction might be caused by a tumor called pheochromocytoma that produces excessive adrenaline, but they aren't sure yet. It's going to take awhile to eliminate that possibility.

"Positive for lyme & co." - I've had lyme and co-infections (Babesia, bartonella, ehrlichia) in the past, and might still have them. "Positive for reactivated EBV" - EBV stands for Epstein Barr virus. My test results show it's been reactivated, so is currently active in my system. Some doctors believe that can be a big problem, others believe it shouldn't cause any symptoms. I've also been exposed to mold which some believe can also cause autonomic dysfunction / POTS.

[Astridmj]

I react to the full moon like crazy always have, my mum used to track my behaviour when I was a kid and I was always different on a full moon, and when we had a super moon a few years back I had my first panic attack and didn’t know it was until a few months after lmao so yeah. But also we are living beings and it’s sillymto think we can’t be affected by everything we are made up of though. 

[AB+72]

Yeah Astridmj, that supermoon was a doozy for me too.

KS42, thank you for the extra info.  My BP doesn't go up when I stand up.  But my heart rate does.  It hasn't dropped much at the doctors office, but it still doesn't feel right.  I feel abnormal.  Like I can't breathe right.  At times it's better than others.  I think I might be in the category of having adrenaline affect it.  Because I was getting a lot of stress lately and anxiety and my symtpoms overall seemed to greaten.  And like I said, I know that one time I reacted very very badly to lidocaine with epinepherin in it.  And then we switched to marcaine for the rest of my dental needs after getting a test done.  But in the end I don't think it was the lidocaine but just the epinepherin that was in it.  My BP went really low that time and I ended up in the ER.  I probably scared anyone else having dental work done that day.   "Oh my goodness, they sent someone to the hospital"........

 

I"m pretty sure I tested positive for having mono at some point or another, but I can't remember if the Eppstein Barr was positive......

 

I read somewhere that people with strep might have induced POTS.  I had it several times as a teenager.  But I didn't have symptoms of POTS until I was in my 30's.  I was a very active, very active up until that point.