Just officially diagnosed POTS - both celebrating and grieving

[Den]

Hello everyone - just wanted to reach out to you all as there seemed to be so much kindness on here when I was trying to find answers.

As of yesterday I have been diagnosed with POTS. I was almost certain I had this condition but having it put in black and white by a specialist has left me reeling a little.

On the one hand I am celebrating having answers after so long...something to fight....somewhere to start. On the other hand I am a little overwhelmed and scared. I go from some kind of euphoria to tears and then back again every few hours. On a major plus note I have found the most wonderful compassionate doctor and I feel so very grateful for that.

I am not really asking any questions....just reaching out to a community of people who I know will understand at a time I feel in need of understanding. 

And perhaps you can share your experience of how it was for you when you were newly diagnosed.

Thank you for listening.

[MomtoGiuliana]

Getting a diagnosis really can be half the battle, so I think you are right overall to celebrate having answers.  And considering what other conditions can cause these symptoms, there are definitely more dire diagnoses.  POTS for most people can be managed and or will improve on its own over time, although flare ups are also common.

Great that you have a caring doctor.

I also felt relieved to finally have a diagnosis (20 years ago!).  I did improve within months of diagnosis.  I have had relapses but mostly I've been able to live a pretty normal life--just have to be careful to stay hydrated--most of the time that is my only issue.

[MikeO]

@DenI agree with @MomtoGiulianaJust knowing or getting or a acknowledgment helps in more ways than one may think. I have had more supportive care by my health team once they figured out i am unique. My Dr's have been more caring and sensitive to my plite. We still have a ways to go but the team is working on it.

And yes i do tear up at times as well. It is OK. 

[Pistol]

@Den - after 2 years of struggling I found a wonderful specialist as well, and getting diagnosed was such a relief! After years of getting balked at, ignored, mistreated and plainly misunderstood it was like a miracle to have a doctor tell me that all of my symptoms are "normal" for someone with POTS! After everyone else had written me up as either Alien or psychotic ... yes, once I got over the happiness of knowing that I am not crazy I got to face the reality that  --- now what?

But doing my homework, researching, talking to other people with this diagnosis and waving goodbye to the cardiologists and neurologists that thought there was nothing wrong with me - in the end I got to understand what happens to my body and live with my limitations. And there I want to give you hope: POTS can be cruel but it also can be moody, meaning it may come and go. The best thing for you to do once you are diagnosed is listen to your body - there are always certain things that will trigger your symptoms. Allergies, barometric pressure changes. heat or cold, stress and overstimulation are mine. To find out what your triggers are it can be helpful to keep a diary of symptoms and the circumstances that preceeded a flare: what did you eat? What was the weather? Did you stand a long time, or get worked up? 

But most of all - drink a lot, eat salty foods and get fitted with good compression hose. Avoid large meals and - laugh out loud, we still live! 

Best of Luck to you!

[mehaller]

Tested 15 days ago - still awaiting interpretation.  Told not to expect communication until June 21.  Depression always at the door.  My wife wants to move 2000 miles back to hometown - near her family - closer to a Mayo (as if I could get in).  But, she's right - one sone would be within two hours.  But the thought of having to move in my current state is overwhelming.  PTSD roars back - hard to practice what helped for so many years.  Silence from the doctors does not inspire optimism.  

[MomtoGiuliana]

8 hours ago, mehaller said:

Tested 15 days ago - still awaiting interpretation.  Told not to expect communication until June 21.  

Tilt table test?  That is a long time to wait -- especially if you are feeling poorly.

[Nin]

On 5/31/2022 at 5:12 PM, Den said:

Hello everyone - just wanted to reach out to you all as there seemed to be so much kindness on here when I was trying to find answers.

As of yesterday I have been diagnosed with POTS. I was almost certain I had this condition but having it put in black and white by a specialist has left me reeling a little.

On the one hand I am celebrating having answers after so long...something to fight....somewhere to start. On the other hand I am a little overwhelmed and scared. I go from some kind of euphoria to tears and then back again every few hours. On a major plus note I have found the most wonderful compassionate doctor and I feel so very grateful for that.

I am not really asking any questions....just reaching out to a community of people who I know will understand at a time I feel in need of understanding. 

And perhaps you can share your experience of how it was for you when you were newly diagnosed.

Thank you for listening.

I felt that way as well. I still do 2 yrs after go through all different emotions 

[Den]

Thank you so much to everyone for your time and words. 

If I have learned anything through this miserable and challenging time it is listen to those that have gone before and tap into the experience and knowledge of those people.

This isn't a 'club' I would choose to be in but thank goodness for platforms such as this that can teach me how those already in said club have moved forward.

[Guest]

I'm a mom of a daughter who was diagnosed back in 2019 and she is now 20 years old and to be honest it has been so rough trying to find a solution, or a provider with knowledge in our area. (Oregon). We were given the run around so many times. They solely based it on a couple of things at first, like her BP, and HR, and syncope.  They said she would out grow it and she hasn't yet. Matter of fact ( not to be a Debbie downer) it has gotten much worse this past month. She is now on medication because she has what they call POT Seizures now. Now they have ran every test you could throw at someone, minus the tilt table- they haven't done that, nor will they do that. We are looking to doing infusions or getting a line inserted so we can do self treatments at home. 

Just keep at it, keep digging, and reading. I found this great book on amazon called The Dysautonomia Project. It has been helpful.  

 

 

[MikeO]

1 hour ago, Ranchin_Around said:

it has gotten much worse this past month

Oh @Ranchin_AroundI just went thru a crap show this last month as well. Not sure if it is because the change of seasons but the same happened last year at the same time frame.

Just queuing in. 

[mehaller]

21 hours ago, DysautonmiaMatt said:

You may want to consider a ND/functional medicine doctor if you can afford it to look into other things that could be causing your POTS that Mayo won't.

I already am.  In discussions with a Physician/Naturopath/Chiropractor who does SGB.  I'll know more on Monday.  The perpetual referral merry-go-round is making me dizzy. 

[mehaller]

4 hours ago, DysautonmiaMatt said:

IF you are going the chiro route

There will be no adjustments.  I gave that up 40 years ago.  I'm a big fan of acupuncture, but nothing worked for POTS.  He's a physician, chiro, and naturopath.  He's had "mixed results" with long covid folks, but more than less.  I haven't had Covid, but I started crashing after the second jab.  I'll know more on Monday.  

[MikeO]

13 hours ago, DysautonmiaMatt said:

I know its very frustrating and most of the time get very little help from the docs we see and the endless drug trials to find something we can tolerate. The medical system is really not setup for people like us.

I have totally experienced this. 

[mehaller]

Update:  

Midodrine isn't doing much.  I'm good for 15 minutes on my feet, as long as I am not exerting any real energy - if I do try any real work - I'll go down, still conscious, but in need of being horizontal..  Headaches are much more common, especially on the meds.  Sleep is harder to come by.

Tried Stellate Ganglion Block.  No joy.  At all.  

VA Neuro doc is completely non-responsive.  He ordered blood work to see if I'm a candidate for IVIG.  Basic plasma labs already back.  Antibody results missing in action.  That was Sept 7.  The doc has stiffed me on two scheduled phone consults.  Hasn't responded to three emails.  Called OHSU - he's still there.  Total Charlie Foxtrot.

I've started selling stuff.  Probably better off with estate sale, move light, buy new stuff at destination - at least that's what the boss says.

That's all folks

[MikeO]

54 minutes ago, mehaller said:

Update:  

Midodrine isn't doing much.  I'm good for 15 minutes on my feet, as long as I am not exerting any real energy - if I do try any real work - I'll go down, still conscious, but in need of being horizontal..  Headaches are much more common, especially on the meds.  Sleep is harder to come by.

Tried Stellate Ganglion Block.  No joy.  At all.  

VA Neuro doc is completely non-responsive.  He ordered blood work to see if I'm a candidate for IVIG.  Basic plasma labs already back.  Antibody results missing in action.  That was Sept 7.  The doc has stiffed me on two scheduled phone consults.  Hasn't responded to three emails.  Called OHSU - he's still there.  Total Charlie Foxtrot.

I've started selling stuff.  Probably better off with estate sale, move light, buy new stuff at destination - at least that's what the boss says.

That's all folks

@mehallerso sorry you are going thru this. Just as i have been struggling personal battles it seems to be never ending. One thing after another. I just went in for a carotid artery ultrasound was not stellar. between trialing drugs (some have increased my orthostatics and kicked my butt) i have still managed to find what keeps me upright (keep working at it)

I Get the selling of assets. I am in the same boat. Too many bad days to work.

Wish the best for you.

Best,

Mike

[atypicalpotsie]

On 6/3/2022 at 5:58 PM, DysautonmiaMatt said:

I know its very frustrating and most of the time get very little help from the docs we see and the endless drug trials to find something we can tolerate. The medical system is really not setup for people like us. I would LOVE to goto a hospital/clinic and have all the testing, drug trials etc done and leave stable or cured.  I have gone to ER and been admitted only to be released feeling worse than I came in.  I remember one ER doc tell me "I am only an ER doc what do you expect me to do? You need psych treatment."  Guess they thought my high blood pressure/heart palps etc was all in my head.

I feel this SO hard right now. An ER doc thought giving me two doses of Dilaudid for pain I was having from chronic pancreatitis would fix my hypertension and tachycardia. She was floored when it didn't.

"Pretty sure it's just POTS."
"Oh, wow! I've read about that, but have never seen it in real life before!" (Hear that one a lot. It's gettin' pretty old.)

This same ER doc also said "Someone call Dr. House! We've got a medical mystery here!" (Always what you want to hear from the person treating you. Oof.)

(Recently dx'd after being aware of what's wrong for nearly three years. I, too, go back and forth between relieved and feeling hopeless.)

I hope things get better for you, and you can find something that'll help you at least a little.

[Catbrat]

On 5/31/2022 at 12:12 PM, Den said:

Hello everyone - just wanted to reach out to you all as there seemed to be so much kindness on here when I was trying to find answers.

As of yesterday I have been diagnosed with POTS. I was almost certain I had this condition but having it put in black and white by a specialist has left me reeling a little.

On the one hand I am celebrating having answers after so long...something to fight....somewhere to start. On the other hand I am a little overwhelmed and scared. I go from some kind of euphoria to tears and then back again every few hours. On a major plus note I have found the most wonderful compassionate doctor and I feel so very grateful for that.

I am not really asking any questions....just reaching out to a community of people who I know will understand at a time I feel in need of understanding. 

And perhaps you can share your experience of how it was for you when you were newly diagnosed.

Thank you for listening.

Hi Den, 

I am sure you will find plenty of support here. I completely understand, getting the diagnosis is bitter sweet. First you have a name for your pain,  but you now know that you have this horrible condition. Just knowing that you are not alone in this battle helps a great deal, and having a specialist who is on point with this condition is key.