Still waiting for DX

[mehaller]

Newbie here 68 year old male.  I've had upper GI problems for 30 years, which has included a twelve-pack of ER visits for non-cardiac chest pain.  I'm a stress test pro.  I always pass without studying.  These non-cardiac chest pain events always included lightheadedness that would exhibited prior to and afterwards each event.  NSAIDs for spinal issues were most often to blame.  

Starting two+ years ago, I started getting more frerquent lightheadedness events and more gastro distress despite pristine diet.  From Feb 2020 to May 2020 I lost 30 pounds I could afford to lose.  Major GI stuff, and occasional bouts of lightheadedness.  The process of elimination began.  GI doc wanted stress test before doing a scope.  OK.  Enter Covid delays.  By the time I got the next perfect stress test results, my GI symptoms resolved, and who wants to go to a hospital during a C19 surge.  So, we bagged it.  I was still active but abandoned most heavy lifting jobs (digging building) and stuck to mowing and gardening.  Caffeine and alcohol, however infrequent, were now completely gone.  

In May 21, the lightheaded stuff started to really ramp up.  I could mow, but only in spurts.  Picking berries for a half hour in the sun was brutal.  I always felt dehydrated.  Since August, I have not been able to do anything.  I'm lucky to make a quick trip through the grocery store before getting woozy and very weak legged.  In the meantime.  More tests, another run to the ER for non cardiac chest pains.  Not diabetes, not hiatal hernia, colon polyps benign, not this, not that, more EKG.  ECG, motility.  Trying a gluten free diet.  

I was DX with Ankylosing Spondylitis some years ago for which I was given Humira.  I have since ceased taking that on the one percent chance that it is causing the lightheadedness.  

I found a "brochure" online by Dr Rowe at Johns Hopkins re POTS.  Talk about ticking the boxes.  I've done 50+ orthostatic BP tests.  By normal supine BP is 110/75 at 60 HR.  My at rest HR can drop to mid 50s.  One minute after standing my averages are 95/75 at 90HR. 

Finally got into see a neurologist and he agrees that it's likely dysautonomia, if not POTS.  It's a six hour drive - one way.  And now, thanks again to Covid, my tilt table test and CTs are on hold. My brilliant acupunturist hasn't delivered any noticeable results other than managing my spinal pain.  

Most recently, I've noticed pretty serious post prandial symptoms.  I eat, walk 15 feet to the cuff, take my BP standing, and it's 90/75 at 110.  I eat less - same results.  I eat no carbs.  Same results.  I eat no protein.  Ditto.

So, I wait.  And wait.  I'm lookng at supplements that might help veinous constriction.  Compression socks were a joke and started some weird tingling.    One other tidbit.  I am loath to bring it up.  My symptoms went into overdrive in May, right after my second Moderna shot.  Probably a coincidence.  The booster debate here at home is difficult.  

Is it POTS or is it NOT?  Dunno.  I know I am still short term ambulatory.  I have no issues driving.  I know it could be worse.  

Try to have a happy holiday.

 

 

[MomtoGiuliana]

Welcome to the forum.  That is frustrating that you have to wait so long for a TTT.  I wonder if your specialist might consider just looking at your vitals lying, sitting and standing in the office.  I know some people are diagnosed that way without a TTT.  Obviously a TTT is the gold standard.  But it might help with getting things moving with trying treatments that may help.  Treatment can be trial and error even with a knowledgeable specialist.

If you have not already seen it, this list mat be useful to review and discuss with your dr., if your dr does diagnose you with POTS.

https://www.dinet.org/info/pots/pots-what-helps-r100/

You say you are feeling dehydrated.  Does drinking more fluid help you to feel better?

 

[Sushi]

23 hours ago, mehaller said:

Compression socks were a joke and started some weird tingling.

Welcome to the forum.

A couple of things: the drop in BP after eating, for me, indicated splanchnic blood pooling (abdomen). I am wondering about your experience with compression socks as, if properly fitted, they shouldn’t cause tingling. If mine are too tight I get symptoms like that, but otherwise they are my best defense against BP drops while standing. I can’t even stand long enough to brush my teeth without knee-high compression socks. An abdominal binder also helps me (for splanchnic pooling) though I don’t use it as much. Hope you find some help soon.

[mehaller]

MomtoG.  I have done a lot of orthostatic BP tests, put them on a spreadsheet, and brought them with me to my first and only neurology consult.  He wasn't prepared to call it POTS but gave me the old "probably dysautonomia, but..." routine.  I'm now scheduled for CTs (I think he was pixxed at my cardiologist for not ordering a simple carotid U/S..), and found a tilt table a few hours away.  

Sushi.  My compsocks caused this weird ... vibration in my right ankle.  My wife could feel it.  It was like a slow sinus that peaked every 4 seconds.  The socks didn't help at all while I was standing.  No matter what I do, I'm okay for about ten minutes, then I have to look for a place to sit.  Hydrating helps.  If I can lean against something, I can alternate pulling my legs to my chest and be okay for another five minutes or so.

To quote Lily Von Schtupp,  "I'm tiwed, so vewy tiwed".

[Sushi]

19 hours ago, mehaller said:

found a tilt table a few hours away.  

That is promising! But, it isn’t the tilt table that is important but rather the person who designs the tilt table test, administers it, and interprets it. You can get totally different diagnoses from different doctors depending on their experience and skill in using a tilt table. When I had a comprehensive test it took about 1  1/2 to 2 hours. Hope you find someone who skilled and experienced with this test. Sorry that compression socks have not worked for you.

[MikeO]

5 minutes ago, Sushi said:

the person who designs the tilt table test, administers it, and interprets it.

Oh this one hits home. I had two tilt table tests and still ended up with no definitive diagnosis and a heads up if i drop at the store be prepared for someone to call 911 - frustrating.

I ended up taking the data elsewhere and got a quick diagnosis for nOH and the help i need.

[mehaller]

Just went through head neck CT, unremarkable... there's a Rodney Dangerfield in there somewhere.  Neuro specified TUT and Autonomic Function Test be performed at OHSU.  I assume my VA neurologist has a working relationship with the lab nextdoor at OHSU.  Another six hour drive I guess. 

Symptoms worsening.  Now getting more chest discomfort after a few minutes on my feet.  Not too bad on my recumbent ex bike.  But still not confident enough to push my horizontal exercise.  

VA docs seem pretty good, but it's like they're wearing shackles when it comes to communication.  I thought about doling out a little more for insurance and going private but I'd still have to drive to Portland.  

Day at a time.

[MikeO]

@mehallerstick with it. Sounds like good news with the CT. Can I ask what meds you are taking?

[mehaller]

Prilosec 2 per day.  Allopurinol.  Tylenol pm.  I discontinued Humira about four months ago as there's a one percent chance of it causing the lightheadedness.  The Humira seems to have fully titrated as my spinal inflammation has returned.  

Researchers are starting to suggest that POTS is an autoimmune disorder.  I was on the immunosuppressant for five years until my Dys stuff really started to ramp up eight months ago (after second Moderns jab).  Can't figure that one out.  Heck, haven't figured out any of it.

CT was clean, no clogged pipes.

[mehaller]

Oh, tilt table test and nerve function tests now delayed indefinitely due to omicron.  

 

[MikeO]

10 minutes ago, mehaller said:

Oh, tilt table test and nerve function tests now delayed indefinitely due to omicron.  

 

Healthcare in my neck of the woods is putting off certain procedures and tests as well. I just checked the bed availability only 12 open out of the 13 hospitals. Probably not a good time to get sick right now.