Input On Ttt Results

[Birdlady]

Hello everyone. I'm a newbie to this forum, but not to POTS. I've been suffering with this for years and years.

I wanted some unprofessional opinions on my TTT. I found my doctor through this website, but I haven't been too impressed with his testing. He doesn't do the extensive testing that I've seen some of you go through. Part of me thinks that I need to find a new doctor, but...I hate having to "start over" with yet another doctor. I'm sure some of you can appreciate that.

When I had this TTT done, I was on 25mg of Hydrocortisone/daily, 1 tab of florinef, 1 spray of DDAVP and hooked up to a saline IV.

Start of Test (SUPINE)==> BP 112/65 HR 82

Tilting==> Each BP/HR represents 1 minute of tilting.

130/83 HR 85

130/97 HR 112

-------- HR 117

137/88 HR 117

-------- HR 120

117/71 HR 121

-------- HR 116

112/90 HR 119

-------- HR 120

110/80 HR 124

-------- HR 125

128/88 HR 126

-------- HR 133

-------- HR 133

123/83 HR 133

123/80 HR 133

-------- HR 136

118/81 HR 134

-------- HR 134

128/90 HR 147

-------- HR 143

129/80 HR 142

-------- HR 137

Started tilting back down for Nitroglycerin==>

128/76 HR 113

-------- HR 109

Tilting Back Up With Nitroglycerin==>

124/65 HR 145

97/55 HR 164

108/70 HR 169

99/49 HR 175

95/58 HR 175

140/80 HR 173

Starting Tilting me back down==>

140/77 HR 137

-------- HR 113

Test Complete. PHEW

Why did he give me the nitroglycerin? I clearly met the criteria for the POTS diagnosis with 2 minutes of tilting. Since my BP dropped with the nitroglycerin does that mean something?

Immediately following the TTT, he told me that I needed to be on midodrine because my blood pressure dropped. He gave me a prescription for this a few months before the TTT. I told him it made me feel just awful and it did nothing for the tachycardia. I think it made my heart even worse if that's possible and I was very anxious while on it too. A few weeks later, I begged him to go off of the med and he agreed, tried giving me a list of other meds which I refused. Then I asked him if I could just try a small dose of beta blocker. To his surprise, this had been the biggest breakthrough with my POTS. Because of the success of the beta blocker, he changed his tune and said that maybe I have the hyperadrenergic type of POTS. He no longer tests plasma norepinephrine levels to confirm that because the normal range is too broad and he never found the results particularly useful or diagnostic. What do you all think of that? Should I push to get these tested while off the beta blocker?

I know you aren't doctors, but if this were your TTT what would you do? Do you think based on TTT and the fact that a beta blocker helps that I could have the hyperadrenergic type? I hate being a guinea pig and I fear this doctor just doesn't do enough testing.

Thanks for reading!

[Birdlady]

Anyone have any thoughts whether this tilt test is consistent with hyperadrenergic POTS?

[erik]

They say that an increase in BP would be characteristic in that case. I'm not sure if it is expected to be of a particular extent or timing or whatever. Might have to discount the first couple minutes of measures because even in normal folks things flux for a bit initially as the body adapts (but that is said to happen mostly with pulse). It does seem that you do not show sign of orthostatic hypotension, though... which some docs exclude as separate from POTS.

Your slight up & down in BP reminds me of myself at this point... but in my case I have had drastic OH in the past too and after some pulses of BP increase I will eventually go faint (with a BP crash). I expect my BP stays & rises more often because I'm on fludrocortisone most of the time... though perhaps my body cycles on its own too (or has other triggers).

I remember reading about the use of nitro in TTT but don't recall the details. I guess it can be used for provoking syncope if it didn't happen on it's own in prior phase of test. Might be trying to look for a vulnerability to dilation beyond what average folks would have... or maybe checking for specific response that can inform treatment options? I know it is part of some people's TTT protocols, but can't remember specifically what docs tend to use it to indicate. Maybe the BP drop without HR drop is significant???

I'm afraid there is some inherent guinea pig aspect to treatment no matter what, since docs rarely have a specific cause pinned down and people respond so differently to treatments. I've been lucky in that nothing I've taken has done anything much in the way of side effect... but also not all that much in the way of desired effect I guess if you go with suspected H-POTS then by some guidelines one might lean toward dual-alpha-beta-blocker (rather than just beta blocker), clonodine (tamps down on all sympathetic output), etc. I sometimes wonder about how much treatment can be "guided" by diagnostics, even by the expert places that do about all the possible testing one can imagine.

Hopefully someone with confirmed H-POTS variety can give better picture of how well you seem to fit that profile.

[janiedelite]

Hi Dana,

You definitely met the criteria for POTS, but your BP didn't go up that much so I can't say if you're hyperadrenergic (although as some on this forum have mentioned, POTS in itself is a sign of a hyperadrenergic state). I think the best way to tell if your hyperadrenergic is to have supine and upright catecholamines drawn. Still, no POTS patient responds in exactly the same way to every medication. Why are you on the hydrocortisone? Just curious.

Also, are you doing the basics like compression, salt, lots of fluids... And have you been checked to see if your POTS is secondary to any other conditions (diabetes, autoimmune, collagen disorders, etc.)?

I'm sorry no one responded to your post earlier.

[janiedelite]

Oops! I posted just after Erik. Regarding the use of nitro during TTT, I recently accompanied a friend who had a TTT. The first half was done without meds and she was upright for a good 20 minutes. Her BP and HR were normal. So the cardiologist explained that he wanted to simulate an environment which would exert the most stress on her autonomic NS in order to see if it was completely intact. So he repeated the TTT after infusing isoproteranol. She ended up still having totally normal BP and pulse.

I believe that if the first half of her TTT indicated POTS, the cardiologist said he wouldn't have stressed out her system with the isoproteranol.

Anyway, that was this cardiologist's reason for giving a medication that would make us POTSies really symptomatic.

I do have mildly hyperadrenergic POTS. I've responded best to salt (6-8 gms/day), fluids (3-5 L/day), thigh-high compression and occasional abdominal binder, and mild exercise daily. I've been taking carvedilol which is an alpha/beta blocker like Erik mentioned. It helps a ton with the chest pain and upward swings in HR and BP, but doesn't help with the flushing/migraine/fatigue that occurs with stress or prolonged talking. So now I'm going to give clonidine a try.

So even though my norepi levels are high, my main underlying problem is still the pooling and I do best when it is controlled as much as possible. There are some POTS patients whose primary problem is not pooling, but an excess of catecholamines. I am not one of them.

[Birdlady]

Thank you so much for responding. This heat wave is absolutely killing me.

My BP is normally pretty darn low and I have seen it drop many many times as I stand up. I thought that was my sole reason for having the increase in heart rate. In the beginning I thought treating the adrenal problem would fix all of this, but it hasn't. The results of this tilt test actually shocked me. I figured my BP would have dropped but it didn't until I was administered the nitro.

I am on hydrocortisone for adrenal insufficiency. Even though I was never confirmed as having Addison's I think I was on my way as I had dark tanning and had no ability to handle stress. I would literally just collapse out of panic.

The one thing I am noticing on the beta blocker is an incredible amount of fluid retention. Add in the warm weather and I feel like a balloon that's ready to pop. Is this a normal side effect or something I should be concerned about?

Unfortunately like I said before nothing has been tested. I had the TTT and he said I definitely had POTS and he just started handing me pills. First it was Midodrine, which I took for a short time. It didn't do anything for me. Then he wanted me to try Prozac, Paxil, Adderall and then a muscle relaxer. I refused to take all of those.

Increasing my salt intake makes me even more bloated. Ugh. I can easily gain and/or lose about 10 pounds in 3 days, which is quite frustrating to say the least.

I'm going to buy some compression stockings and see how I do. My calves are very swollen right now. Does that go along with pooling?

[Sophia3]

Well basic, TECHNICALLY speaking. POTS is all about HR INCREASE. your BP can stay the same, but if HR increases 30 BPM or more USUALLY means pots.

My HR leaped 55 BPM on first minute of ttt. They never gave meds to spike HR where I went ...first, I did not need it and w my HR ...would not have been smart move.

My BP is often low while resting...can jump when standing then drop back to normal.

But we do not want to confused facts. Postural Tachycardia Orthostatic INTOLERANCE is judge by fast HR alone..which is why MANY docs that give TTT FAIL TO RECOGNIZE POTS..they are used to BP jumping or falling.....sigh.

The place I went also thought administering isoprop (sp) gave false answers.

[ramakentesh]

I think the whole concept of hyperadrenergic POTS is still being debated. Two fairly recent publications - one from Mayo and one from Vandebily Autonomic centre suggested that there was no correlation between the level of norepinephrine in patients and their symptoms, whether they tested positive for a3 receptor antibodies, whether they had hypovolumia or whether they failed a QSART test.

The only correlation found was between norepinephrine levels and the response to beta blockers - higher levels resulted in patients handling beta blockers better.

The jitteriness and anxiety in POTS can be explained by other mechanisms - hypocapnia occurs in around half POTS patients and alone causes feelings of anxiety. Also the body releases adrenaline to counter the effects of reduced blood flow to the brain.

The conclusion in these studies was that the hyperadrenergic states where exaccerbating features and only in rare cases did they constitute the primary problem.

[nmorgen]

I was diagnosed with Hyperadrenergic POTS.

I wasn't given anything during my TTT. My blood pressure was signifigantly higher than yours and my pulse pressure narrows signifigantly to around 15. The narrow pulse pressure is what makes me feel horrible.

My blood pressure spikes and low pulse pressure is what made me go to a cardiologist in the first place. I told him that my highest bp after folding laundrey and feeling terrible was 175 over 157 with 160 pulse. He told me that the reading had to be faulty as I would be in congestive heart failure. After the tests he called me and told me that I was correct about my pulse pressure becoming so narrow.

I'm taking clonidine and it has helped. I still have problems, but my pulse pressure has gotten better and I don't feel like I'm having a heart attack everytime I get up to walk around the house.

Good luck.

[Birdlady]

I am probably not hypertensive enough to be in the true hyperadrenergic category. All I know is that supplements and meds that are used to lower/block norepinephrine tend to help me. It calms my anxiety and heart rates significantly.

I'm having another TTT done at Cleveland Clinic in the beginning of June, so we get to see what this new one shows. I think FINALLY I will have my catecholamine levels tested too.