Why Do I Feel The Worst When My Vitals Look The Best?

[familypast]

According to the results of a TTT I had at the Cleveland Clinic, I have both orthostatic hypotension and tachycardia. I had follow up tests last week, so hope to know more about the specific cause when I get the results. In the meantime, I have been keeping a log of my BP, pulse and temperature, along with comments about how I feel. Actually, I started doing this about a year ago, after noticing fluctuations in my blood pressure (at that time, I was seeing high spikes in my BP, which is unusual for me). I resumed tracking about two months before my tilt test and have been doing tracking it since then. (Since the tilt, I started checking my BP laying down, sitting up and standing).

To make a long story short, I have noticed different patterns in my vitals and how I feel.

1. Orthostatic symptoms upon standing: Drop in blood pressure and increase in heart rate, resulting in lightheaded feeling, racing heart, etc. Sometimes worse than others.

2. Feeling "relatively" fine i.e. feeling functional. Very mild symptoms (It figures, I had mild symptoms on both days of testing. Fortunately, it still showed up on the TTT, but as "delayed and accentuated")

3. Normal vitals (and orthostatic response), but feel crappy. Based on my data, "crappy" is a combination of several symptoms: a. unrelenting fatigue, "flushed feeling" in my face (face feels warm, but isn't red), palpitations (even though my pulse is LOWER than my tachy episodes). I often have a mild, headachy feeling in my eyes - at least, I feel like I'm going to have a headache, even if I don't have one

By the way, these were also the symptoms I had last year, when my BP was spiking. I was put on Benicar last April, which has stopped the spikes, but I still have these weird spells. Oh, and the spells usually happen for several days or weeks in a row.

Debbie

P.S. I almost forgot. I did notice that my body temperature is LOWER on these days. My cheeks feel warm (flushed), but I have a low temperature. When I checked a few hours ago, it was 96.7.

[ramakentesh]

The problem with many of these conditions is that the traditional tests arent really very helpful in determining that there is even a problem and when you are symptomatic.

[Brye]

I've noticed this as well. My heart rates are so much better controlled now than they used to be but for some reason I'm not feeling a whole lot better. I expected to have more energy when my heart racing stopped, I was hoping to stop fainting, I was hoping my tremors would subside. Didn't happen. I've been seeing strictly cardiologists and I think I may need to focus on some of the other problems caused by dysautonomia as well.

Brye

[mountain girl]

Interesting, because I too track my pulse and bp, especially when I am starting a new med or dose change. I have a pots dx based on positive tilt table test and numerous other tests to rule things out. My hr and bp are mostly normal now, but I too experience the extreme fatique , jittery feeling, and sometimes nausea and lightheaded/dizzy feeling. I am glad the hr mostly stays normal but I was like you in that if that is the case why don't we feel better?So if it's any consolation to you, I know exactly what you mean.

[prettyinpink]

I have the same problem. I asked my cardiologist about this and she said that with POTS your blood pressure and heart rate readings don't tell you whats actually going in your body. If you have normal vitals it may just be because you're body is working hard to keep them normal but in an abnormal way which is why you feel bad. did that make any sense?

[prettyinpink]

I'm a type one diabetic and there are times when I know I'm low but I test and I'm 100. 100 is a perfect number. I drink juice and i'm still 100. i eat and drink more because i feel really low and I continue to stay at 100. Even though my blood sugar stayed at a constant good number, it was only because i was drinking juice to prevent the low. And if my body needed that much food and juice to stay at 100 then i was clearly burning though sugar which is why i felt so awful.

[familypast]

If you have normal vitals it may just be because you're body is working hard to keep them normal but in an abnormal way which is why you feel bad. did that make any sense?

I've wondered about that - or something along those lines. With tachycardia, your heart is beating very fast, but is not doing so efficiently i.e. too little blood pumped with each beat. IF we assume that a slower (normal) heart beat is more efficient, then we should feel better. But what if that slower heart beat is NOT pumping proportionally greater volumes of blood? Then we're no better off -- and perhaps worse off, depending on cardiac output.

[Stormie74]

I did notice that my body temperature is LOWER on these days. My cheeks feel warm (flushed), but I have a low temperature. When I checked a few hours ago, it was 96.7.

That sounds just like me! Doctors always said my thyroid was to blame for the low temps, even when my thyroid hormone tests showed all my levels to be "perfect" on the meds I was taking. When I don't feel good, my body temp is ALWAYS low. YOU ARE NOT ALONE!

Caron

[daisy]

I've always wondered this as well....why am I so symptomatic when my heartrate and bp seem stable? No clue.....the past few days have been just AWFUL with the dizziness, vertigo and head pressure (the rainy weather probably wasn't helping here on the East Coast) but heartrate and bp were ok. Every time I stood up though and was on my feet I just got so sick I had to lie back down. I guess it's our bodies trying to make adjustments that we aren't seeing yet in our vitals???? Whatever it is, I wish it would just stop.

[Brye]

Makes me feel better that I'm not the only one who still feels cruddy in spite of fairly normal vitals. Mountain Girl do you see a cardiologist for you POTS or have you seen an auntonomic specialist? The explanations for symptoms in spite of good vital control seemed very logical. Now how can it be fixed? It's been very discouraging that my vitals seem to have improved and I still feel so cruddy all the time? So frustrating!!! I'm thankful for the improvements I've had but is this it?

Brye

[Maxine]

It sounds like this can be pretty confusing when you have "normal" vitals, but yet feel sure they must not be because your feeling so poorly.

Once when I went to my PCP, I was sure he would see very low BP, and my heart rate would be tachy---or close to it. I'm on 20mg propranolol 3 x a day, so when my HR gets high I feel pretty bad. Anyway, my BP ended up being 138/90 which is high for me. The only theory I can think of is that it must be "over shoot"----meaning I must have had a big dip in BP, and my body was trying to compensate and went overboard----- Sounds good anyway----or does it? I feel pretty bad when my BP is low, but I did notice that my spine felt buzzy----electric, but otherwise I was wiped out.

A really good autonomic nervous system specialist will gauge your symptoms by other means other then your BP and HR. I get the low body temps also, and if it gets below 97.5 I feel really sickly---fluish. I'll ask my husband to feel my forehead and it's cool-----while at the same time feel sure I have a fever.

Big HUG to you--

Maxine :0)

[potsgirl]

Maxine~

I just experienced the same thing over this past weekend. I was sure I had a fever, and felt like I had a flu or some illness for sure, but my temp was only 97.5. How odd!