Doctor Thinks He Cured Me

[TypewriterGirl]

I've been logging my BP and HR for the past month to send my doctor since he's been playing with my meds. Today I asked him what the next step was and he replied, " Your blood pressure and heart rate are all better?". I'm no longer getting error messages when I take my standing blood pressure but still tired within an hour of being out of the house, haven't been able to go into work in a month and a half, and am still always thirsty. Is this just my new normal?

[TypewriterGirl]

From the past few days:

Feb 15, 2010, 8:05 PM, 113/84 mmHg, 122 bpm, stress level: 2, notes:

Standing

Feb 15, 2010, 8:02 PM, 112/69 mmHg, 84 bpm, stress level: 2, notes:

Sitting

Feb 15, 2010, 3:03 PM, 140/89 mmHg, 89 bpm, stress level: 1, notes:

Standing, 2nd midodrine

Feb 15, 2010, 3:01 PM, 120/81 mmHg, 75 bpm, stress level: 1, notes:

Sitting

Feb 15, 2010, 10:13 AM, 111/79 mmHg, 107 bpm, stress level: 1, notes:

Standing

Feb 15, 2010, 10:12 AM, 115/80 mmHg, 82 bpm, stress level: 1, notes:

Sitting midodrine

Feb 14, 2010, 10:13 AM, 118/85 mmHg, 102 bpm, stress level: 1, notes:

Standing

Feb 14, 2010, 10:11 AM, 128/86 mmHg, 87 bpm, stress level: 1, notes:

Sitting, midodrine

Feb 13, 2010, 4:01 PM, 128/80 mmHg, 83 bpm, stress level: 1, notes:

Standing, 2nd midodrine

Feb 13, 2010, 4:00 PM, 112/80 mmHg, 73 bpm, stress level: 1, notes:

Sitting

Feb 13, 2010, 10:11 AM, 118/78 mmHg, 130 bpm, stress level: 1, notes:

Standing, HR 133

Feb 13, 2010, 10:10 AM, 120/74 mmHg, 104 bpm, stress level: 1, notes:

Sitting, midodrine

[lieze]

The only thing I can offer is that my heart rate and blood pressure have seemed to improve but I still get symptoms. I can go take my heart rate and blood pressure while I'm feeling crappy and they look normal most of the time. So I can't explain it. I tell myself it's just a feeling I'm getting but it still really scares me at times. I'm interested to see what response you get here.

lieze

[Brye]

My last TTT was perfectly normal on my current meds. I still feel terrible, have no energy, and still faint! I'm thrilled my vitals are pretty normal but what about my other horrid symptoms? It's very frustrating and almost more discouraging that my VS's are fairly normal and I still feel awful. My last contact with my MD was call if you continue to have more problems! Really? How often do you want the phone call!

I understand your frustration. I'm not accepting my new normal!! I'm going to keep pushing until my new normal is something I can tolerate. It is not normal to faint! This whole "of course you faint you have POTS" is for the birds!! And my last cardiologist I saw in the ER "there is no cure so really we can't do anything for her" Could you maybe try to help me treat the symptoms at least. I'm done venting now ... thanks for listening!

Good luck!

Brye

[Kitsakatsa]

LOL Whatever. To correct both heartrate and blood pressure and to say that you are cured is like to not open your mailbox and think that you have no more bills to pay.

This is such a deficiency to a dynamic process. My doc says that you can never ever heal or simulate a dynamic process and the best anyone can do is figure out how to bolster up a POTS patient, but its purely artificial and doesn't come close to being the actual pure ability.

The first step to becoming more functional is to get that heart rate and blood pressure to its optimum level, the next step is to build tolerance for activity, the next is tolerance for stressors (such as exercise) and the next is to minimize the crash cycle. This is how he explained it to me. So, you may be at the beginning of the journey, but once you can reach the point you are at- you are on your way to a much better life.

Kits

[TypewriterGirl]

LOL Whatever. To correct both heartrate and blood pressure and to say that you are cured is like to not open your mailbox and think that you have no more bills to pay.

This is such a deficiency to a dynamic process. My doc says that you can never ever heal or simulate a dynamic process and the best anyone can do is figure out how to bolster up a POTS patient, but its purely artificial and doesn't come close to being the actual pure ability.

The first step to becoming more functional is to get that heart rate and blood pressure to its optimum level, the next step is to build tolerance for activity, the next is tolerance for stressors (such as exercise) and the next is to minimize the crash cycle. This is how he explained it to me. So, you may be at the beginning of the journey, but once you can reach the point you are at- you are on your way to a much better life.

Kits

This was really helpful - thank you. I felt like I was taking crazy pills.

[vemee]

If your pots is due to pooling of blood then just focusing on the heart rate and bp is doing nothing for you. The heart rate can be lowered and controlled through beta blockers and other meds but slowing the heart rate will only increase pooling. The focus on heart rate often overlooks the underlying cause. I have severe pooling so when I go to the doctor I take my shoes and socks off so the doctor can see my feet turning purplish scarlet. That reminds him that even though my numbers and last tilt table test were fine, I still have a problem which is the cause of my symptoms.

[potsgirl]

I see you have a list of sitting to standing BP's and HR's. What are your numbers when you going from lying down to standing, like a TTT? Your BP looks pretty 'normal' and your HR aren't too bad, but mine are very different going from sitting or lying to standing. Could you give us some of those numbers, so we're comparing apples to apples in the case of a TTT?

Sorry you're feeling so yucky. I know I felt so much sicker than my numbers showed for my first year or two. Hang in there!

Cheers,

Jana

[TypewriterGirl]

I see you have a list of sitting to standing BP's and HR's. What are your numbers when you going from lying down to standing, like a TTT? Your BP looks pretty 'normal' and your HR aren't too bad, but mine are very different going from sitting or lying to standing. Could you give us some of those numbers, so we're comparing apples to apples in the case of a TTT?

Sorry you're feeling so yucky. I know I felt so much sicker than my numbers showed for my first year or two. Hang in there!

Cheers,

Jana

During my TTT my laying HR was 75 and went over 200. My BP dropped from 120/84 to 50/32 and dropping. I haven't done a laying to standing test because I started Midodrine and I've just been testing my numbers an hour after I take it. I should definitely test it before I take it and after it wears off. Thanks for the suggestion!