RunningWild

I had a cardiac MRI and trans-esophogeal echocardiogram when i was first admitted to the hospital. I was born with congenital heart defects (patent-ductus, and pulmonary stenosis), and had begun getting migraines with auras. I had a regular echo before i was admitted that showed a PFO, and they were concerned maybe i was having TIAs or other blood clot issues. The cardiac MRI showed no real structural abnormalities, and the TEE showed a PFO with some bi-directional blood flow. I don't think any of the cardiac issues were related to my POTS.

I then did Holter Test and Tilt Table for the POTS diagnosis.

I didn't have the best experience, but I also didn't see Dr. Jaegar.

I felt like the results of my two days of testing was: "She has POTS"

which I already knew. Good thing my fam lives in Cleveland so it wasn't a completely wasted trip.

Traci- What book?

I've been seeing a chiro for a few weeks, and while I don't think it's helping the POTS as much as I hoped, he is certainly optimistic that it can.

It's Blackout by Breathe Carolina. Very fitting for me

And to yogini-

They do believe that I have POTS, but none of my doctors are willing to try new things, to step away from the norm- which hasn't worked for me. We are our own best advocates, but its so tiring to constantly hunt for answers when we're so tired as it is.

Im always cold as well.. and I really don't tolerate the winter months well...

This past weekend, I went to Old Navy shopping with my parents. Everything was going as well as i could have expected, but then suddenly my whole body turned a firetruck shade of red. The grossest was the layer of clammy sweat on my back... which is also strange, because i hardly even sweat when i was running (especially not on my back).

It didn't go away until about an hour later, when I was freezing cold again.

What vascular surgery did you have? If you don't mind sharing

Cleveland Clinic dx'd venous insufficiency in my legs/pooling when standing

my vascular surgeon here in Pittsburgh confirmed it was a bad case for a 23yr old. I had greater saphenous vein ablations on both legs, and phlebectomy on my calves.

i went from having purple feet all the time, to having two normal pink legs/feet. The change there is really spectacular, but it really didn't do much for the POTS symptoms.

My primary care doctor keeps asking me this. Like maybe I will magically come up with the answers... But I don't know what comes next.

My Electrophysiologist threw some ideas, like I could go to Boston to see a Dr. friend of his. That's kind of a stretch.

My Dr. at Cleveland Clinic basically gave me a list of meds (that i previously had bad reactions to) and sent me on my way

I had vascular surgery to reduce blood pooling in my legs (success, by the way) but POTS is still an issue.

I'm just now stopping my birth control to see if anything changes. It's my last resort.

Where do we go when there are no more answers? Do we just continue on the path of meds and lifestyle changes until we wake up one day and POTS is gone?

Seasonique basically destroyed my life for a year, but I dont know if I had POTS then. It made me moody, irritable, no sex drive, tired all the time, etc. etc. I came off of it and switched to Zovia and I've been on that for 2 years now. I'm a much happier person, but I guess my POTS stuff happened since starting this. My boyfriend wants me to try and come off BC all together to see if my POTS goes away. Its sorta like my last option.

Yeah when he told me how the procedure would be done, i almost puked out of sheer nervousness.

Im sure it will be much worse lol

So I know a couple of people have posted a bit about blood pooling in the legs, valve and vein issues, etc.

Well I finally had my appointment with the vascular surgeon at my nearby hospital. They did ultrasounds on both of my legs and determined I have severe venous insufficiency- the valves aren't getting much back up toward my heart when im sitting or standing.

When the Dr actually came in to speak with me, he was shocked that I'm only 23 with such bad varicose veins and the extent of my problems were upsetting. He also DID RESEARCH ON POTS (!!!! OMG!) and said he thinks that if this isn't causing the majority of my problems, it's at least contributing to them, definitely.

They took some pictures and I've been scheduled to have greater saphenous ablations with phlebectomy on both of my legs. He says this will reduce the pain and swelling in my legs, improve the appearance, and REDUCE OR ELIMINATE SYMPTOMS CAUSED BY THE POOLING OF BLOOD IN MY LEGS- which is what my Dr. at Cleveland Clinic suggested was the culprit of my POTS.

I'm so excited to have some answers, and hopeful that this pushes me in the right direction- toward recovery

So I had my first appointment with a psychologist yesterday. She had me take the Beck Anxiety Inventory right off the bat. Nearly all of the symptoms are the same as POTS

But I know that POTS side of me isn't caused by anxiety (i am not anxious upon standing, but heart rate goes up)

And I know that I have anxious tendencies and have had anxiety attacks before POTS even began

How can we differentiate?

How can we make one better if the other is always there?

My psychologist does not prescribe medication, but what are typical options for anxiety?

I was on Xanax but basically just used it to sleep.

Cleveland Clinic testing suggests I pool a lot in my lower legs... I am seeing a vascular surgeon in August to do ultrasounds of the veins in my legs.

Hey all.

Recently I have been having a hard time getting more than approximately 4 hrs of sleep each night. It doesn't have anything to do with the inability to sleep, really...

I constantly wake up in the night because my limbs are numb. Mostly my arms, but sometimes my legs too.

If i roll over and even remotely touch one of my arms, it goes numb. Legs fall asleep if I curl up.

The only time I sleep is when Im stick straight on my back.... but I can't sleep like that because its not comfortable.

Any ideas?

Weirder for me: I went to see my gynocologist for a yearly exam yesterday and told him a lot has gone on since i last saw him. He said "not really. I have had 3 people with POTS come in this past month. Its no big deal"

Kind of like a slap in the face.

I am originally from the burbs of Cleveland. Living in PGH now.

I think it bothers me more so because I just keep getting 'its pots' 'its pots' 'its pots'.

Great. Well WHY is it POTS? I get it, but what next? Dang conundrums.

Also, it bothers me that my mom is so worried about me, and she feels like im not trying hard enough to get answers.

I was denied by my work's provider because of my POTS diagnosis.

I haven't started looking elsewhere yet.

Has anyone ever gotten to the point where they stop trying?

Stop testing, stop following-up on a weekly or monthly basis, stop searching for answers or reasons or ideas.

I feel like that right now.

That's what I'm wondering. I do have pretty bad varicose veins and stuff in my legs though... maybe he thinks there can be a relation there?

So I had a follow-up with my PCP after my visit to Cleveland Clinic 2 months ago.

Basically, the results were "confirmed you have POTS, blood volume workup showed probably normal results- doesn't look cardiac-related"

So they suggested the basic Midodrine increase, compression socks, physical therapy(?), and whatever.

I stopped taking Midodrine because it wasnt working for me...I wear compression socks...My neurologist has me on beta blockers for migraines, but will probably be cool about increasing dosage to help with the POTS as well.

Stuck again. The results also suggested venous pooling and that I could follow-up with a vascular doctor. Anyone have experience with this?

I think it's totally unrelated to my POTS, but everytime I've tried using a tanning bed, I break out in a horrible rash that lasts for days. SOOO uncomfortable. Normal sun doesn't do this to me.

Blood tests came back normal, but anemic again (which is normal for me)...

Doesn't explain the symptoms, at least not to me.

So I have been feeling pretty crappy lately, but I also just started beta blockers on Friday, so I was attributing a lot of it to that...

Well yesterday I woke up with my neck all swollen and sore, and found that my glands in my neck were very tender and inflamed.

So I made a Drs appointment at my PCP, but hes on vacation, so I got to see another Dr. at his practice.

He walked in, said "Well aren't you certainly a complicated case" and "The medications you are on sober up a lot of us doctors and pharmacists"...

Anyway, he noticed for sure that my neck is swollen, more on the right, but on both sides. No fever, no signs of obvious infection, so he's running some blood panels.

Kinda confused with what might be going on...

Tired

Horrible headaches, neck pain

Low left back pain, comes in waves

nausea, stomach issues, bowel issues

weight loss, 4lbs unexpectedly

night sweats

cold all the time

WHY MUST WE BE SUCH A CONUNDRUM ALL.THE.TIME?

In my test, they place a special xray machine over you and very close to your skin. It feels a little intrusive, but definitely not claustrophobic. You do have to stay extra still while they do this part.

I didn't tolerate midodrine, florinef, gabapentin, etc. Beta blockers and maybe some form of SSRI are my next option...

I know that a lot of people work around the bad days, i just feel like I have more bad than good. I guess we'll just keep workin at it.