results- really disappointed

[persephone]

I just don't believe it. I'm just out of hospital after 2days in the cardiac care unit AGAIN- my pulse was down to 37 and up to 141. I nearly smashed my face off the patio in the garden on Tuesday- it was utterly relentless- every time I stood I fell. The heat is relevant- we're ha\ving aheatwave here like we've not had in YEARS. It is DEFINITELY making me worse.

By sheer coincidence while I was there, my results came through from my week of autonomic testing.

I can't believe it, but the letter gives no hard data except on some of the blood tests. It also says my circadian rhythm (on my blood pressure) is normal after evaluating my 24 hour bp. I don't understand how they can say this- every reading taken when I was standing didn'ttake0 it flashed up as an error because it was so erratic. Yet they seem to have totally overlooked this.

They've also said my bp was ok on tilt- even though I know it was down to 75/65 at one point.

They've not recommended any drugs--and I can't even see the consultant til Novemer.

My cardiologist is very confused- he says if I don't have low BP, then what I have isn't POTS, because my autonomic nervous system, according to the results, is ok. So what is making my pulse go up to 166 and down to the 30s like it does?

I just don't know WHAT to do.

I can barely move- and you guys know how good I was over graduation--walking, running, dancing, ceilidhing! Now I'm back in my wheelchair and I feel so let down by everyone.

I just don't know where to go from here, or what to do next.

[ariella]

Sure the results bear YOUR name?

I can imagine what you must be going through right now. I just was NOT treated for severe shortness of breath because of one hospital pulmonary function test (the only one of several that was able to register anything) that even the technician said is invalid because it was inadequately measured. That felt pretty big at the time, but this must be huge for you, you've been basing all of everything on this. Has treatment for ANS been working?

BTW, my POTS doc made the diagnosis at the time when my bp was not low, he said the main diagnostic feature is increased tachy upon standing.

Feeling your frustration so strong. With you.

hugs,

Ariella

[briarrose]

Ariella

On the contrary of what some doctors may think; Blood pressure doesn't have to be effected to be POTS. There are many good articles that you can print and give to your doc. When I first started this illness I was only diagnosed with POTS, basically the tachycardia. At least a year into my illness I started having the pressure drops. Here is an article by Dr. Grubb

http://www.hcs.gr/Keimena/4_2002/sel%2047-...0Diagnosis'

[persephone]

Thanks Ariella. I still have lots of questions for the team at the clinic and I'll be getting in touch with them about this one. My cardio is already trying to make contact. He saw my bp dip to 67/59 yesterday, so knows something is amiss, whether as Jenn said in her lovely message to me just now- perhaps the test just didn't pick up THIS time. Remember that I was feeling pretty well when I went up there for the tests. I was quite ok. Not totally ok, but reasonably. whereas now, I have taken a huge nosedive and literally come crashing

[briarrose]

Here is one of my favorite articles and you might want to read symptoms - AND at the bottom there are many useful links posted, I love the one titled Mind Experiment for Doctors http://home.att.net/~potsweb/mindexperiment.html

Edited July 17, 2005 by Michelle Sawicki

[Lukkychrm42]

BTW, my POTS doc made the diagnosis at the time when my bp was not low, he said the main diagnostic feature is increased tachy upon standing.

This was my understanding, as well- obviously most of us, if not all, have bp problems, but, although I've read conflicting data online, most of what I've read confirms this. Vanderbilt, for instance, says that it's an increase of 30 or more bpm and a dip of no more than 20 in bp.. that being said, I, being recently diagnosed and still in research mode, obviously don't know why things are the way they are!

Just yesterday I spent 24 hours with the horrid ambulatory bp monitor (3 hours sleep if that much), and practically every time it went off and I was standing, an error message popped up. I mentioned it to the NP, but doubt they'll care, and instead will call me and tell me that I'm either normal or hypertensive.

Just out of curiosity, the thing was so loud that everytime it went off I did a little jump and my HR increased.. if it offsets adrenaline like that just turning on, isn't it a little counterproductive??!!

Anyway, I'm sorry you're having so much darned trouble! Hopefully it'll cool down for you some so you get some relief from the passing out. Other than that, I'm not sure what to say except that your observations of what your body is doing have got to be more accurate than what some doctor says it should be doing. I hope you find the answers you need to get you in shape so that you can rock your socks off at Oxford this fall!!

[persephone]

Thanks guys. I'm so glad it's not just me. It's still pretty disappointing, but I know this follows a cycle and WILL pass- it HAS to. It always does.

[becky]

hey,

this is really unfair on you, i know you were hoping to find out something from these tests, don't let it get you down (and i know how hard that is) we'll find you some help.

i know you said that you were feeling "well" when you had the tests but did you also say they weren't done in proper test conditions? this really matters, i don't know what to do but write and complain to the clinic in london, write to your mp (my mum did this he wasn't much help to be honest) and try to get your cardiologist to recognize what he is seeing in you and start treating it.

this heatwave has really affected me aswell, i have very bad vertigo and feel really nauseous also my pulse and bp are all over the place, haven't been to college in three days.

i feel so mad for you that you spent that long in hospital for nothing, i understand your frustration and anger.

god, i wish we could just lobby parliament and get all these doctors off their bums and do something about this, i am so angry about this, i already wrote to tony blair to tell him what i thought of the nhs and the treatment of pots sufferers, he didn't write back, i'm going to try again though.

sorry this turned into a rant. i'll be more positive tommorrow hopefully, going to see my g.p and see why i've all of a sudden got serious vertigo again, they love me!! (ha,ha!)

[Roselover]

Oh Pers, I'm so sorry for this big disappointment. I had autonmic testing last Dec which was really screwy too... they said I was "normal" and yet, the sweat test equipment malfunctioned, and the report says my BP dropped abnormally and yet in another part of the report they call the results normal. Also, they had a cardio come in during the tilt part of the test and they were measuring the BP with a finger cuff. The cardio says" that's not a very acurate way to measure the BP is it?" The tech explains that in other places they use an arm cuff. Then I had to tell them that just down they hall in their hopsital the rehab dept does tilt table tests with an arm cuff. (that's where I got my first POTS diagnosis) They just looked at me surprised. Hmmph...... I don't understand how these doctors trust more in their test results than in their logical thinking!

I really hope you can get more info and insight about all of this. BTW - are you OK now? How's your heart beat? Did they find anything else or see the episodes you were worried about?

~Roselover

[MightyMouse]

test results may or may not have been inaccurate; the results are all about the interpretation. If the person who interpreted the test isn't "in the know" then perhaps you got the right test, the right readings, but the wrong interpretation. It's also possible the tests were done incorrectly--we've had several members have a tilt table test done while they were recieving more than just iv medication--they also had IV fluids, which will likely change your test results.

Hang in there, and it's good that your gp is inquisitive and questioning the report. Nina

[yogini]

Persephone,

Yikes! Did the report say that your actual HR and BP were normal, or just the "circadian rhythm"? (I've never heard of that before.) In any case, that's disappointing. Some of those test results can be hard to understand, even for docs if they're not familiar w/ POTS. I know when I showed my NY docs the report from the Mayo Clinic, they had no idea what it meant. So maybe there is a little hope that the report actually does show something is wrong, but your doc doesn't understand it. Hopefully you'll get a full explanation when you meet with them in Sept.

It sounds like you have a good attitude. Try to hang in there. For your appointment in Sept, you could get copies of all of your hospital records which show abnormal HR and/or BP and also keep a log of your stats at home. Maybe they will be able to prescribe a treatment based upon that info?

-Rita

P.S. I know what you mean about the heat. I went out for an hr on Monday and got the worst symptoms I've had in months. It's 3 days later and I still haven't recovered. Never again!

[Sunfish]

pers-

others have already said most of what i would have to add re: testing protocol, interpretation of results, etc, but i just wanted to send a (((((hug))))) your way and echo your frustration. i can't imagine. the one upside is that your doc is trying to help get things sorted out. and aside from the testing, i know how tough it is to be in such a hole health-wise after having such a good period. i've been fighting through that all of this year after having been doing so well for awhile. glad you're home from the hospital but sorry you had to go for a visit...i'm guessing they "just" monitored you but otherwise had little to offer? (that's how my stays on cardio units have been when i've been there for BP/HR symptoms)

hang in there,

:-)melissa