Hi! New! - updated, got POTS dx!

[BuffRockChick]

Hi!  I'm having mixed feeling about finding this forum, mostly relief.  I have self-diagnosed POTS, and have appointment set up with my GP to get referral to endocrinology to check for hormone problems which might be causing my symptoms.  I started having symptoms in 2003 after having mono.  I was mis-diagnosed with panic disorder in 2004 without a medical/physical workup and have been unsuccessfully treated for a long list of psychiatric diagnoses (which never respond to treatment...). My last diagnosis was ADHD as I did fabulously on methylphenidate (at first until psych nurse raised the dose and it all went to heck), however neuropsychology evaluation didn't really suggest ADHD.  My questionnaires were 90th percentil for symptoms, but my testing was mostly 50th percentile.  The too-high dose of methylphenidate triggered an episode of anorexia (my third), and I had help from a dietician to get back to a healthful diet.  My symptoms continued.

I was reading online trying to understand my symptoms (because what else does one do when in bed for hours during the day?!).  I thought maybe postprandial hypoglycemia, so I bought a blood glucose meter and found no correlation with my blood glucose.  I have PCOS but wasn't tested for differential diagnoses, and that rabbit hole led to POTS.  I tried standing heart rate tests at home.  Resting heart rate 60, after standing for 10 minutes it has been 90 - 130, alternating hot/sweaty or cold/chills/goosebumps, out of breath, dizzy, grayed-out vision, fatigue, "depression", irritability.  Which are relieved by lying down and completely gone when my heart rate returns to normal.  It's worse in the morning and when I get less-hydrated.

THIS EXPLAINS SO MUCH!  I'm looking forward to having it "official" in my medical records!

I'm coping fairly well now.  I'm a stay at home homeschooling mom.  Thankful, since I can't work very much outside the home.  I'm legally disabled and have used a service dog in the past when it was more severe.  My worst symptoms are fatigue and irritability.  They're particularly hard on my husband.  Poor man works 50+ hours, and comes home to do barn chores, gardening, and cooking!  Sometimes cleaning and laundry too!  He's a saint.  

Since doing the standing heart rate test I have figured out that I can alternate short bursts of activity and rest to get a lot more done during the day.  I use a HIIT timer app (oh the irony!) and set it for 5 minutes high intensity interval (and by that I mean anything upright) and 5 - 7 minutes low intensity interval (that's lying down).  This seems to keep my heart rate in check and relieves most of my fatigue.  It's mentally draining to switch activities, I'm hoping I can adjust to this rhythm.  I was able to take a walk today also!  About 1/2 mile easy hike on our property.  I generally do okay walking, but today was especially good because I'd just lie down in the grass to rest when my heart rate was higher.  I've had 2 long bedrests during pregnancies, so I'm conscious of how bad deconditioning is.  I've been creeping more and more sedentary the last few years since I was on a psych med that aggravated POTS severely and I could barely do anything.  I'm trying to reverse the trend.  

I was feeling sorry for myself, but after reading on this forum I'm thankful I can walk.  My heart rate jumps to 120ish after a couple dozen steps, but I usually am okay for easy walking in moderate temperatures.  Standing kills me.  I haven't fainted, but I've grayed-out, collapsed, lost vision a couple times briefly - super scary, and fallen a lot - including down stairs once last fall! 

I haven't found a pattern yet.  What do you track?

[haugr]

Welcome to the forum BuffRock!  So sorry you are dealing with this.  I hope your doctors can find some answers.  In my opinion, in addition to tracking your heart rate, blood pressure can be a helpful data point too.

[MomtoGiuliana]

Welcome to the forum.  Hope you are able to get a correct diagnosis and treatment plan soon.

[Urkittenme]

Welcome!!

[kalamazoo]

I would highly recommend a glucose tolerance test. It diagnosed me with insulin resistance as I also have PCOS. My symptoms greatly correlate with my insulin levels, I can feel when they're high, my blood sugar is fairly normal but my insulin levels are 5x normal and when they're high I get exaggerated POTS symptoms. 

[BuffRockChick]

Thanks Kalamazoo!  I suspect something hormonal.  I'm going to my family doctor in a couple weeks and plan to request referral to endocrinology. 

[DizzyGirls]

Hi!  Welcome to the forum!  I'm a stay at home, homeschooling mom, too!  Well, I should say "was".  They've both graduated within the last 2 years!  Hang in there...it's tough to homeschool when you don't feel well.  I applaud you for taking on the challenge.  Lots of salt and water!!  This is the greatest group of people, so hopefully you might find some answers.  Take care!

[kalamazoo]

Well with both insulin resistance and pcos hormonal issues are supet common, i have them too. Def go get everything checked out and let us know what happens!

[cmreber]

Welcome! I hope you find some answers soon! 

[BuffRockChick]

Updating!  I saw my GP.  He checked pulse and blood pressure after 2 minutes of standing.  Both were up.  He referred me to neurology for tilt table test.   I'm kinda dreading it, but will also be a relief to get a better idea what is going on.

[BuffRockChick]

Updating again!  I saw neurologist today.  He confirmed POTS diagnosis, ruled out underlying neurological disease, and referred me to cardiology to "establish diagnosis".  Turned out that clinic the tilt table test is done in cardiology department but my PCP thought it was in neurology.  I had some impressive tachycardia after three minutes of standing this morning!  I'm glad it was caught and recorded in my chart.    

I'm so tired from the appointment!

[AbeFroman]

Hey BuffRockChick, I'm glad you are getting answers. I am starting this same process now and it does indeed help when you see others out there dealing with the same issues. It also must be very validating to get a diagnosis and FINALLY know what is wrong and it's not just in your head. Best of luck to you. 

[BuffRockChick]

(Written May 30, I forgot to post it)

Thanks @AbeFroman! It's great to see how others are coping with POTS and try what works for them!

My husband is starting to change his attitude (very slowly).  I think the biggest single thing to change how he was thinking was when he asked "Why did he refer you to a neurologist?!" and I replied "Because it's a dysfunction of the autonomic nervous system."  He's starting to see (but is not yet willing to accept) that I'm more functional when he backs off and doesn't question my need for rest.  If I try to get up and go on 7 hours of sleep, nothing good comes of it.  But if I stay in bed and sleep through the morning, I can have a productive afternoon.

Haha, I'm up with less than 10 hours of sleep to get to an important appointment this morning, and...  I fell twice between my bed and the bathroom.  

[BuffRockChick]

Update!!

I had a rough day yesterday, fell 10 times and fainted once.  Hubby saw me faint.   I've only fainted twice and he has seen both times.  I'm glad.  He pretty much has no idea what it's really like for me.

I had cardiology appointment this morning.  Cardiologist thinks it is POTS.  They did EKG and I have 48 holter on now.  Will have echocardiogram on Tuesday and tilt table test to be scheduled ASAP.

[BuffRockChick]

EKG results were sinus tachycardia, sinus bradycardia, sinus arrhythmia, ventricular premature complexes.

Echocardiogram was normal.

Holter results were "consistent with POTS"

Tilt table test scheduled for August.

[BuffRockChick]

Tilt table test done.  Diagnosed with POTS.

My HR went up 93bpm in the first minute! My blood pressure went up to 178/87 in the first minute!  Stayed tachy and hypertensive the whole time.  Violent tremors, legs gave out.  Didn't faint, they stopped the test after 13 minutes.  I was slow to recover, tremor for about half hour, couldn't walk for about an hour.  

[BuffRockChick]

I hope this one is a final update.  I'm on florinef 0.1 mg and my symptoms are all controlled.  I am struggling with low appetite though.  I am ecstatic, having some identity crisis.  Very emtional, and happy tears.  I have been able to shower, unload the dishwasher, put my toddler to bed.  Little thing that seem insignificant, but I've never been able to do without distress and fatigue.

[KiminOrlando]

Enjoy your success! I'm happy for you.

[Guest ANCY]

So happy you are having some "normal" moments shared with family especially! Hope it continues to help and you can get back to feeling well. Keeping you in my prayers.

[BuffRockChick]

More updates!  I had fluctuation of symptoms.  Added midodrine which controls blood pooling better.  I started exercising and learned about ANS hacking and tried a corset for abdominal compression.  I did exercise as "movement" and focused on spending more time standing each day until I got to 7 hours standing!  There are things we can try to hack our ANS for better functioning.  Meditation down-regulates adrenals and stimulates the parasympathetic (rest and digest) system.  Laughter hacks the ANS too.  Time in nature stimulates the parasympathetic.  Sunlight stimulates the pineal gland.  Etc.  

I also switched to a ketogenic diet which solved my GI symptoms.  My gassy, bloaty, belchy, achey, gurgley belly is calm and quiet now, and my decade of chronic constipation is over.  As long as I don't cheat and eat off-plan, I don't get postprandial hypotension and fatigue after eating.

I am now off medications.  I still have orthostatic tachycardia, but it doesn't bother me. Because my resting heart rate is so low, "tachy" starts at 84 bpm for me.  I'm usually around 105 bpm while standing now.  If I don't get stressed out, I don't get additional symptoms.  But when I get stressed out, I get POTSy all over again until I can hack my ANS and get calmed down.

It's still winter here, so I'm not dealing with heat or bright sunshine yet.  I know I can acclimate to heat, but fast temperature changes provoke symptoms.  I don't have a plan for coping with direct sunlight.  I am excited for spring.  In the past, I've had a crisis every year in spring.  I believe these were from temperature changes provoking POTS symptoms.  I'm excited to see how well (or not) I adapt through spring and see if I can survive the season without a flare.

I think my POTS is part genetic predisposition and part central nervous system sensitization.  My POTS started during a period of intense stress.  Flares coincided with bad jobs, bad situations.  Remissions coincided with periods of lower stress.  I think this is why ANS hacking has been so beneficial for me.  I am curious to see what unfolds in the future and find out if my suspicions are correct or not.