So Confused

[kellieb]

On Monday 3/14/11 i got diagnosed with hyperadrenic pots by Dr pierce. I wrote the Dean of the medical school. Who got me into the head Card Doctor

For Treatment. And also Research from the medical school. I gathered all my Medical records brought them to him this morning. He told me he is not as convinced that i have pots because of my tilt table results. With pots your HB is supposed to go up by 30bpm within 10 mins. Mine was 12. He also told me he doesnt know why im haveing the tremors/twitches. And i need to talk to my nuro doc about that. If i remember correctly this is one of the symptoms of pots? Im gonna post my Tilt results on this aswell. Any input would be gladley appreciated. Im so confused. Scared. dont know which way to go. Please let me know if im missing any info that might be useful from the tilt results.

Patient placed in supine resting postion for 5 mins. baseline parameters were SINUS rhythm at an average rate of 72 bpm blood pressure was 140/94\

pulse 100%

The table was tilted to a head up postion of 70 degrees at 13:28. The patient complained of changes in vision weak and room spinning at this time.

A 12 lead ECG, blood pressure and pules oximetry readings were monitored thoughout the study.

The patient experienced symptoms of "tingling Feet" all other symptoms Stable at 13:30 or 2 mins into the tilt. The ECG was Sinus rynthem at 76 bpm,

BP was 159/129, pules oximerty was 100%

the patient experienced symptoms of "head spinning" at 8 minutes into the tilt. The ECG was Sinus rhythm at 85 bpm, BP was 178/135, pulse oximetry was 100%

The pertient experinced symptoms of VERY PALE,"PASSING OUT",slowed speech,Diaphoretic at 12 mintus into the tilt. The ECG was Sinus Rhythm at 84 BPM, BP was 191/139, pules oximetry was 99%

The patient expeirneced symptoms of Tachycardia with return of normal mentation at 13 minutes into the tilt. The ECG was SINUS TACGYCARDIA at 105 bpm, BP was 181/130 pulse oximetry was 99%

The Table was returned to a suprine postion at 12 minutes into the tilt.

The patient did not lose consciousness during the study but reproduced symptoms,near syncope.

The lowest heart rate was 72 bpm during sinus rhythm. The lowest blood pressure was 140/94 pre-test, 159/128.

Impression: Abnormal Tilt study with presyncope In the absence of a significant fall in pressure or heart rate suggestive of either cerebral syncope or psychogenic syncope.

The patient tolerated the procedure well.

Limits of study outlined to patient.

[sue1234]

The patient tolerated the procedure well.

I love that saying--what exactly does that mean?? That if we don't have a stroke related to the ungodly high blood pressures, we "tolerated it well"??

I think their "10 minute" rule is too strict. Okay, technically you didn't hit a 30 point increase until 12 minutes. They forget that NORMAL people don't have this kind of response from standing.

[kellieb]

I totally agree. BJ the nurse who did this. Said you would have been out if we didnt lower the table. That is tolerating it well? lol Im SOOO confused. i have recored my HR at up to 150 BMP during one of my spells on my bp monitor. And aslow as 40. Even on some of my test results from the halter monitor the highest recorded was 150 pm the lowest was 40 BPM

[MomtoGiuliana]

I was also of course struck by "the patient tolerated the procedure well".

Gosh that is so frustrating. POTS can vary from day to day even minute to minute. I doubt I would have a textbook TTT result every day, yet I have POTS, based on one test done on a day I felt very badly. Anyway, they clearly identified your results as abnormal orthostatic response and a diagnosis is needed. Is he washing his hands of your case?

[Lovebug]

I'm a nurse and I've documented "tolerated procedure well" many times and that means just that. But from the description (& all your complaints DURING the exam)...you did NOT tolerate it well and that should not have been documented. In this case, I suppose it means you didn't die!!!

Regarding your results, you sound positive or at the least you have OI. However, I'm not well versed in the art of tilt table tests (or reading them). I so hope you get the help you need. Try drinking tons of fluid to keep your BP down (worked for me). I drink ~4L/day. If I don't, my BP is high and I sometimes get a headache.

Check this out (may help): http://www.ndrf.org/orthostat.htm

[kellieb]

No he is not i got back on april 13th. He said you have all the symptoms of it. even from 2006 when i got diagnosed with svt, and sinus tachycadia.

i complained back then of feeling light headed like im going to pass out. Ofcourse noone ever took my bp during this. And when they did they would always getting it while im sitting so it would be usual. IT wasnt until i went to the ER on December 21,2010 that it was dicoverd my BP goes up as i stand. he perscribed support hose thigh high 30 mmhg and Inderal 20mg BID. Show me some wall excercise with crossin my legs and flexing them. He said even with pots he does not believe in medication. He likes to treat it without. I asked him what is wrong with me then. He said he is not sure. he needs time.

[kellieb]

All of these people seemed to be freaking out during my test. Like they wasnt expecting the end results. Freaking out. They had the card doctor down there within 2 minutes. That to me does not sound like o tolerated it well. I have had treadmill stress test. then a treadmill stress test with echocardigraphy when i failed the first one. i lasted 6 min 41 secs with the second and 5 mins 25 secs with the first. They had me on a B-blocker for my SVT for both of these test. I was instructed to take them.

the first test was basline HR 108 resting bp 130/86 maximum HR 170 bpm maximum bp was 140/78 she recorded that after i already sat down. She couldnt get it when i started having a episode cause i she had to hurry and get me off the treadmill.

Stress Interpretaion

1. Resting tracing indicates normal sinus rhytm. there are non-sprecific T-wave changes

2. the electrcarigram is negative for ischemia

3? Abnormal clinical response to treadmill stress. Dizzy and pale with excersise and had to immediately stop tradmill excercise.

4. blunted blood pressure response to excersize.

5. Minor arrhymias occured during stress or recovery. There are occasion stress-induced preamture ventricular contractions.

Duration 5 min 25 secs.

the second one where i had the echocardiography with it.

baseline HR 87 bpm resting bp 120/92 maximum hr 175 BPM maximum BP 180/96 The highest was BP was recorded as soon as i layed back down on the table to finish the Echo.

Stress Intpretation

1. REsting tracing

the reatinging tracing indicates normal sinus rhythm.

2. The electrocardiogram is negative for ischemia.

3. Abnormal Clinical response to tradmill stress. The patient exhibited poor excersize tolerance.

4. Hypertensive blood pressure responce to excersise.

5. No signicant arrhythmias occured during stress or recovery.

Stress Echo Interpretation

REst Echo study: Normal left ventriclular systolic function without regional wall motion abnormalited at rest.

Immediated Post-Excersize Echo study: Hyperdynamic left ventricular systolic function without stress induced ischemia.

Edited March 20, 2011 by Rachel
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[toddm1960]

Not sure what drugs you take, if any, but were you talking anything that would slow your HR before you took your TTT? Many drugs affect TTT results. I love these doctors.....if you can't stand up for 10 minutes you're very sick, if you can make it for 12 minutes nothings wrong with you?

[kellieb]

Not sure what drugs you take, if any, but were you talking anything that would slow your HR before you took your TTT? Many drugs affect TTT results. I love these doctors.....if you can't stand up for 10 minutes you're very sick, if you can make it for 12 minutes nothings wrong with you?

Yes They had me on a Beta blocker. Which slows my HR down. If y0ou look at all my test results. My basline HR is diffrent each day! Even on the tilt.

Right now at sitting postion. have been sitting since 10am got up once to potty. my BP is 145/103 HR is 90.But it verys. from hour to hour day to day. i took that around 45 minutes ago when my body started feeling shakey. Almost like a adreinline rush. I have every symptom of pots the normal diagnosis you get prior too. the normal complaints leading up from IBS to Sinus tachycardia. They took me off the Beta blocker a few weeks ago. When i went to my primary about the pots. She took me off the bisoprol 5mg and put me on Bystolic 10 MG i hada very bad reaction to that. Went into what felt like one of my episode but only 10 times worse. After that i was just on my Topomax 50 mg two times a day. Then on monday night they call in Venlafaxine 75mg and Labetalol 100 mg. i took them both with a large glass of milk at 6pm by 6:20 i was sweating nausious fast HB couldnt keep my head up. Felt weak. By 6:30 i was in the bathroom vomiting. I felt alot better after that.

[kellieb]

I should also probally note that he told me to go get salt tablets from the store. And eat as much salt as possible on my food. Aswell as all pots is the same wiether it be hyperadrenic or hypo. From my understanding with hyperadrenic your not supposed to have salt at all. Or even with the high bp. Salt is bad. Am i totally confused. Or what? one doctor saying yes i have it. Another saying no i dont. Should i trust the one who is supposed to know about the hyperadrenic kind? or the original Doctor who diagnosed me? My Gut tells me dont listen to him and continue to see Dr pierce.

[Sarah4444]

It is all so frustrating. Do you have to choose or could you see what both docs have to say next? I'm a bit confused about the salt too - I have hyper POTS based on very high catecholamine levels during TTT, but so far have mostly low bp issues. I tend to salt my food generously and eat salty snacks, but didn't feel well when I tried salt tabs - apparently they can draw fluid to the abdomen and make things worse?

Glad you tolerated your TTT (i.e. didn't die). I think sometimes they forget we are actually people, and that we have to go on living with this even after we leave the lab or appointment. They don't really understand what it feels like (except maybe a couple of the real experts like Dr. Grubb and the Vanderbilt guys, who keep emphasizing in their articles how disabling this is - hope their message eventually soaks in).

[kellieb]

I'm not sure. I wont be able to see either one by the end of this month with no insurance. Im a single mother. about to lose my job. Dr Grubb states in one of his articles that salt should not be given. I do have an appointment with Dr Pierce on 3/24 i am going to keep that. i called the office today. told them what he said. They asked who im gonna continue treatment with. Them or the other. I cannot have both.

[Sarah4444]

I'm so sorry about your job and insurance, that's just so awful and unfair. As if this wasn't hard enough.

[Lovebug]

Both your stress tests look to confirm S&S of Dysautonomia to me. Basically you have no ischemic changes (i.e. no heart blockages) yet can't tolerate exercise. I was the same way when first diagnosed...I couldn't sit up without a pounding headache (hi BP) and my HR being elevated. I was miserable. Once I found my cardiologist (who happens to treat Dysautonomics), I have been a different person who has been able to maintain work. It has taken me >6 months but I've improved gradually & am happy about that. One of the first things he told me was to fluid load (I drink 4L/day) and you need the sodium to hold onto the water in your body (otherwise you urinate it all out). I've never taken a salt tablet but try to eat things high in sodium...such as canned veggies, snacks, & table salt. You don't go overboard on it, you just need to replace some electrolytes b/c you dilute yourself with all the water you drink. Powerade Zero is a good choice to get fluid AND electrolytes but I can't tolerate it due to GERD. I also have severe IBS so I can relate on that point. Your best bet is to get a doctor that is empathetic and knowledgeable about Dysautonomia. Let us know how it goes!

Edited March 20, 2011 by Rachel
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[toddm1960]

The salt loading issue has been a discussion point on a few post lately looking at the long term cardiac risks of it. The idea behind even people with orthostatic hypertension salt loading is because they can have thoracic hypovolemia, their blood just pools in the splanchnic region. The bottom line is, there is a blood volume shortage in the heart/chest area, and also to the brain just like people who are orthostatic hypotensive. One symptom both groups share seems to be we're all hypovolemic.