Will You Share Your Ttt Numbers With Me?

[bellaluna]

Ok, so I had another doc appointment on Tuesday, and I was hoping and praying for a referral to a POTS specialist (because the only docs in my area that deal with POTS require a referral). Instead, I walked out of her office with a prescription for an anti-depressant. So, yet another doctor thinks that I am just depressed and/ or making this all up. I feel like I am in the middle of a crowded room, screaming my lungs out and nobody can hear me. I'm so frustrated. So, I pointed out my TTT numbers and that I felt they were not normal. Nope, according to the doc, they are fine. I just can't believe that- here's what they were:

resting before TTT: BP 144/84 HR 84

at 17 min into TTT: BP 174/110 HR 113

at 18 min into TTT: BP 157/98 HR 118

Then, after infusion of Isuprel

5 min after infusion: BP 158/100 HR 147

Now, maybe this isn't clearly POTS, but certainly it doesn't look normal to me! But I'm doubting myself now. I know y'all are not doctors and can't interpret my numbers, but if you could share yours, so I could compare... maybe even get a little sense of validation. I don't want to press on to another doc who will just tell me I'm crazy if it isn't going to get me anywhere. If this doesn't look like POTS or any other abnormality then I might as well just drop it and try to get on with my life. You know?

I'm sorry if this post is kind of negative, I'm just kind of in a bad place right now...

Mary

[wareagle]

Hi Mary..sorry you're having so much trouble! I don't remember my numbers exactly...but I know one of the first TTT I did I "only" went up about 28 bpm..so they dx. with an "atypical anxiety disorder"..what a crock. When I saw my specialist for the first time just looking at the report from my first evaluation he could see there was something going on!

According to your numbers you technically fit the profile for a person with POTS. If you look on the main DINET page it states that a person that has an increase of 30 bpm upon standing and/or a sustained HR of 120 they can be dx. with POTS. Many doc. don't realize that blood pressure fluctuations aren't necessary in the dx. of POTS.

I'm not sure I understand why your doc. won't referr you to a specialist. Perhaps if you call the specialist yourself and tell them your numbers (that's what I did) they'll see you w/o a referral. Or simply go to another doc. until you can get one to referr you...that's one problem I've never had...most docs. want to get rid of me so they were happy to referr me to some one else! LOL

Maybe print out the dx. info. from DINET and present to your current doc. and then ASK them why they won't referr you. It's not like they're going to get into trouble if they send you to specialist and you DON'T have POTS..good grief!!

Keep us posted!

[mandasmom]

resting 99/70 HR 65

30 DEGREE TILT 104/60 HR85

70 DEGREE TILT 95/47 HR 150

I did not get Isuprel

I was dx'd with severe pots

[ellen]

Mary, I just posted my TTT results this week- I went from 70 to 111 bpm -that's an increase of 41 within ten minutes. I believe the "rule" for POTS is an increase of at least 30 within ten minutes, and it looks like you just barely missed that. But you might have been having a "good" day.

BUT, ( the good news is) I also left my doc's office with a prescription for an anti depressant! I actually asked about it because it has been used OFF-LABEL to treat POTS. He agreed to let me try it for 6 weeks and see if it increases my energy.

We need to get over the stigma associated with mental health, and do what helps improve treatment.

Don't give up - we have all been through the self doubt, because this illness is so difficult to diagnose, and the medical community is just becoming aware of it. With the help of DINET and forums like this, doctors and patients will improve our understanding and treatment of dysautonomia. I hope you feel better!

[ajw4790]

Hi!

I am not sure about what wareagle was saying about BP and how that works if you already start out with a high BP. From what little I understand it doesn't look like the typical POTS presentation, and it isn't NCS b/c BP went up. But, it could be more of an atypical presentation or something else all together.

Your BP's were VERY high, especially starting out resting. Do you have any diagnoses that this falls under? Is this typical for you? Or was it likely due to the stress of the appointment that they were high?

I can't remember what your history, symptoms are? If posted do you have a link?

My TTT

Supine HR 83 BP 119/78

1 min. 103 133/81

5 min. 122 123/84

9 min 134 120/78

Stopped at 9 min. due to feeling AWFUL, and they said they got what they needed.

So, change in HR was 51 bpm. BP went up a little and then back down. But for that I was only of Atenolol for 24 hrs. So, may have had some affect...

[Sophia3]

Yes your BP is on the high side

I only remember my BP did not fluctuate much but within the first minute of being upright, my HR went up 55BPM.

I was sick the entire 45 minutes and the attending doc (filling in for my then cardio) said the test was "inconclusive".

I coulda never handled the med to stimulate heart more.

My cardio at my next visit and autonomic doc confirmed DEFINITED Autonomic dysfunction but they don't use the word "POTS" but it's no brainer POTS.

Grubb said the same thing when he saw the TTT print out.

My BP can be very LOW SUPINE 90/60 or 80's/40's in AM

[Maxine]

Both of my TT tests were inconclusive. My Heart rates did go up 30bpm, but it was delayed. Blood pressure dropped 30 points too. I was nervous, so I constricted, which skewed the results of the tests.

Dr. Grubb diagnosed POTS. My BPs get very low still, and my blood pools in my legs. I have worn compression hose, and my BP still drops. My BP has been as low as 68/39, and is low every day. It measured 80/70 in Dr. Grubb's office which showed a pulse pressure of only 10. I was diagnosed based on medical history, and severe symptoms of OI.

A lot has happend since then, and still struggling to get control of disabling symptoms. In fact when I crash my BPs can get HIGH. I feel terrible with tachy, tremors, adrenaline rushes, and ending with crippling fatigue. Fatigue is always part of this anyway. I'm used to being fatigued, and sometimes it takes drop attacks to make me realize how sick I really am.

There is a lot more to ANS dysfunction/POTS then a HR increase of 30bpm, and BP decrease of 30 points.

TT tests need to be added along with other ANS testing to accurately diagnosed POTS or other forms of dysautonomia/ANS dysfunction.

Maxine :0)

[bellaluna]

Thanks everyone for sharing. My BP is not typically that high, but I was really nervous and anxious that morning, so I think that is why it was high. As far as my symptoms, it started back in September, I started having "episodes" where I would pass out or nearly pass out for no reason. After I'd had a few, I noticed that my heart was beating differently right before I'd have an episode. Then I started having dizzy spells, and extreme fatigue and weakness. And insomnia- it's funny because I've been more tired than I've ever been, but can't sleep. Headaches, shakiness, nausea, feeling cold but not being able to tolerate heat... I also have "flushing" episodes and those leave me feeling very bad... My symptoms are very "POTS-like" according to what I've read. I was thinking possibly hyperadrenergic form because I read that some of those patients have an increase in BP and HR during TTT. Plus the flushing episodes, etc.

I don't know, maybe it isn't POTS. But POTS is the only thing that really fits... I'm just feeling so discouraged and full of self-doubt right now. I'm trying hard not to buy into what the docs have told me, especially since my newest doc freely admitted to knowing nothing about POTS. I'm just tired of trying to explain, you know? I know I shouldn't complain, because some of you have gone through WAY more than I, but it's hard not to be frustrated.

Thanks again for all of the info and support. I'm glad I have this place to come and share my feelings- I truly think that you guys are the only ones who can identify.

Mary

[ajw4790]

How does your BP tend to run?

Has your thyroid been fully checked out?

Did anything happen in September to start it all up? A virus, stressful event, surgery etc?

Maybe you should try to get a referral to a dr. that knows more about dysautonomia, to see if you can get some relief.

Also, were you on any meds for your TTT? If no, and you take some normally- how many days were you off of them?

Your right to be frustrated, all of this can be very frustrating!

Hope you can get some answers!

[doctorguest]

Besides feeling anxious, what other symptoms did you experience while tilted? Were you off all medications that day? I tend to agree with your doctor that the numbers by themselves are not typical of POTS or NCS. Besides autonomic dysfunction, there are many other things that could cause your symptoms, some of which has already been mentioned by others (i.e. thyroid). Also, depending on what age you are, menopause or peri-menopause may also be cause; thus, if you're between 40-50 years of age, it's important to check the levels of certain hormones, and I hope your doctor has done it. Other labs that come to mind are complete blood count, electrolyte levels, thyroid function tests, vitamin B12 level and morning cortisol level.

Finally, and most importantly (after reading your second post), have you had a Holter monitor and an event monitor that recorded your heart rate/rhythm before you pass out? This would be very helpful to evaluate for a possibility of any heart arrhythmia as a cause of fainting and other symptoms. I am assuming that the cardiologists have done this, as it's their "bread and butter", so-to-speak.

[pat57]

20 min 110/72 HR 96

TNG 0.2 mg given

27 mins 0/p HR 40

[Maxine]

Are you on a beta blocker Mary?

That can also skew the results of the TTT.

I was on a beta blocker. I had been on one since 1990, and felt way to sick to try and go off of it for the test.

I did not get Isuprel either, there's no way I could have handled that.

Good luck, and I hope you can find some help Mary, and find out the cause of all your symptoms.

Maxine :0)

[delphicdragon]

Let's see if I remember. It was a while ago ( get to have another one on Thursday)

Laying Down : 115/60, pulse 115

Tilted (1 min) : 158/130, pulse 168

Tilted (5 min) : 90/??, pulse 130

I was given a diagnosis of high blood pressure and told to take high blood pressure meds as well as salt load!!!! Took the results to an endocrinologist and was diagnosed with POTS.

Best of luck to you.

Sara

[Lauren78]

This is a good question BellaLuna, and I enjoy reading everyone's results. I wondered about the BP thing too...my most obvious seemed to be my heart rate.

My results were:

At rest: 72 bpm and 110/81 BP

1 min in: 145 bpm and 104/78 BP

3 min in: 257 bpm and 105/80 BP

5 min in: 175 bpm and 102/67 BP

For the next 5 minutes my heart rate went between 120 and 198, with one tachy strip. BP was between 84/51 to 118/64.

For some reason they felt the need to give my nitro...since I didn't faint. Is this normal?? Because, reading my above info I think that would have told them the outcome right there!! Anyway, after the nitro my strip was:

164 BPM and 107/55 BP

3 mins later it was 188 with 82/53 BP and I passed out

Upon waking my bpm was 86 and BP was 102/58

These seem pretty full on POTS to me. But I was discharged with a "partial dyautonomia" diagnosis. What do you all think??

[Megan]

I don't have my exact numbers, but I do know that my heart rate only went up by 20 something. (28?) However, I was already on Prozac for depression when I had the test, and have been diagnosed with full blown pots due to my symptoms.

[bellaluna]

Wow- lots more info here- thank you all again. Let's see if I can remember everything... I did have an event that may have triggered all this- I had 2 wisdom teeth surgically removed in July of last year. The operation did not go well (in fact to this day, I have not been allowed to speak to the doc that did the surgery- I think he's afraid I want to sue him), and I still have some residual numbness in my face. That doc also jammed my first vertebra during that procedure- I had to have months of physical therapy just to fix that. So, yeah, that could have kicked in something.

My thyroid has been checked, and re-checked, and re-re-checked. So, I don't think that's the problem. I was on Gabapentin, stopped taking it the day before the tilt, since I didn't know I was going to have to go in for a TTT, so perhaps that skewed the results? During the tilt, I had nausea, sweating, felt really warm and flushed and just felt really ill in general. After the isuprel infusion I again felt nausea, warm, had the sweating, and my legs were trembling uncontrollably. Unfortunately for me, the tech that administered the test failed to document that, and so the docs aren't seeing that, until I tell them, and I think that it could be an important piece of information.

I'm too young for menopause (31- will be 32 in April), so I don't think that is it. I also did wear a 24 hour Holter monitor, which, unfortunately for me, did not pick anything up because I did not have any episodes that day, and was not particularly symptomatic. I told them right away that they wouldn't get any info from that. I suggested wearing a monitor for a longer period of time, so we would have a better chance of actually getting something recorded, but that suggestion didn't get very far. That was with my old doc, and he was kind of a jerk.

So again, thank you all so very much for sharing. I truly appreciate all of the info, it has been most helpful.

Mary

[cardiactec]

I've had quite a few tilts, in many different facilities but my results have always turned out the same, no matter where/what facility.

Supine: 120/68 HR 96

Stand: (1 minute) 128/74 HR 166

Stand: (5 minutes) 108/78 HR 170

Stand: (10+ minutes) 120's-130's/70's HR 204

I wasnt given isuprel standing like they normally give it, because my HR's were too high. they gave it to me supine and my rates only got up to around 146 BPM and BP didnt drop much.

with me, i felt pretty cruddy. my legs felt completely swollen (and were!), i felt nauseous to the point where i had one of the nurses get me a bucket cuz i thought i was going to puke, felt sweaty, not a fun time.

[doctorguest]

Mary, I think there are enough symptoms that you describe the do make one suspicious for some type of autonomic dysfunction. Clearly, you had symptoms of orthostatic intolerance during your tilt, and although the numbers are not typical, POTS COULD still be your diagnosis. There are 2 ways to proceed at this point: one would be to get a referral to a major center for autonomic disorders where they could run other tests of the ANS to arrive at a diagnosis. This may require travel and expenses, depending on where you live.

Another option is to treat you as if you do have POTS, even though the TTT results are inconclusive. If you get BP spikes, then maybe a beta blocker is a good choice to start with. Your treating physician should come up with a plan, regardless of what the test results show. After all, we treat people, not numbers .

Good luck to you! I am positive that you'll get better with the right medications on board.

[bellaluna]

Mary, I think there are enough symptoms that you describe the do make one suspicious for some type of autonomic dysfunction. Clearly, you had symptoms of orthostatic intolerance during your tilt, and although the numbers are not typical, POTS COULD still be your diagnosis. There are 2 ways to proceed at this point: one would be to get a referral to a major center for autonomic disorders where they could run other tests of the ANS to arrive at a diagnosis. This may require travel and expenses, depending on where you live.

Another option is to treat you as if you do have POTS, even though the TTT results are inconclusive. If you get BP spikes, then maybe a beta blocker is a good choice to start with. Your treating physician should come up with a plan, regardless of what the test results show. After all, we treat people, not numbers .

Good luck to you! I am positive that you'll get better with the right medications on board.

Thank you so much- I feel a little better now. Actually, my first doc, upon my insistence did prescribe Atenolol, which has helped tremendously. I have not had a syncope or presyncope episode now for a few weeks, and the dizziness is better (I do still get hit out of the blue occasionally). The tachycardia or "funny" feeling heartbeats are a little better too. I am still struggling with the weakness and fatigue, and who knows, maybe an anti-depressant will help with that, I'll have to wait and see, I guess.

Again, thank you. Looks like I will keep pressing on for that referral!

Mary

[morgan617]

Atenolol actually increases my fatigue, but the benefits far out way the side effects.

Sorry, jumping in late here. My primary and cardiologist had a big fight over my TTT. The cardio said it was negative because I didn't faint and my pcp said you don't have to faint for it to be positive. I went with my pcp.

my lying was about 150/90 100

tilted was 170/100 130 after 5 minutes

They gave me a quarter dose of Isuprel and my pulse went to 180 and bp 200/120 I felt crummy all day.....It was not fun, but they argued that because my bp went up so high, it couldn't be an OI problem......so my pcp said he felt I was hyperandrenergic and it was probably a baro reflex thing with me. But no one has ever given my any specific diagnosis, ever. I told them I would never have another one, but I know that many people have had several. But since they do it and have no idea what it means here, it seems a bit silly for me to do it again. I'm glad you are feeling better, sweetie! morgan

[bellaluna]

Thank you so much Morgan- I'm so glad you shared, because I feel, based on what you've said, that our experiences are similar. The Atenolol makes my fatigue worse too, but I'm willing to deal with it because it does help with the other issues. I think that because I didn't faint, that is why everyone is saying it is negative... as I said before, I do suspect that I may have a hyperadrenergic issue in my case. Would you mind sharing how they've treated your condition?

Again, thank you. Thank you all- you've been so helpful. I don't know what I would do if I didn't have you people to turn to.

HUGS!!

Mary

[morgan617]

Mary, I take 50 mg of atenolol at bedtime, which helps with the daytime fatigue. I worked up to that dose. I also take a low dose of valium, which I was initially given for my inner ear disorder, but discovered it helped with the hyper surges.

I had to try a whole lot of meds before we found atenolol to be the best. It controls my bp pretty well, which has a tendency to sky rocket out of the blue, which is no fun at all.

I still get break through tachy and bp spikes, but they are better controlled. I have an unrelated disease that has a huge affect on my autonomic system, and so take a lot of potassium. But this is done under a doctor's orders and carefully controlled. I don't do anything that's not regulated, because I figure as intolerant as I am to regulated stuff, it's really terrifying to me to take something with no regulations placed on it.

This is a personal choice and holds absolutely no judgement about anyone on here that uses natural remedies. I also veer away from salt, the opposite of many here, because it does contribute to my high blood pressure. That's it, they know of nothing else. I had cardiac ablation in 2003, which actually caused my bp to not flucuate at all. I guess since for a short time it took away the tachycardia, my body tried to keep things in check by jacking up my bp all the time. My constant bp was never below 180/110 minimum.

Over time, the tachycardia has returned and my bp has become paroxymal again. But on the atenolol, it hasn't gone that high again. morgan