Continued hypertension in cardiomyopathy

[GretchenP]

I was diagnosed with peripartum cardiomyopathy two long months ago.  My only symptom is high blood pressure.  I am currently taking 1200mg of Labetalol and 0.1mg of Clonidine with breakfast and supper, and 10mg of Altace with lunch.  

Neither the Labetalol nor the Altace had no noticable effect on my blood pressure.  With the introduction of the evening dose of Clonidine, by morning blood pressure immediately dropped from the 140s/80s to the 120s/70s, sometimes even 110s/70s.  The addition of the morning dose of Clonidine seems to have made no change in the evening blood pressure.  In the mid-afternoon my blood pressure starts rising from 120s to 140s to 150s and onward.  Sometimes it stops in the high 150s, sometimes it goes on to the 180s/90s.  Occasionally it will top 200/95.  There are even times when my face starts to become very very hot, and when I take my blood pressure it is in the 200/100 range.

Many physicians have supposed that the increase in blood pressure in the afternoons is tied to the children coming home from school.  However, we homeschool so the children are always at home.  The blood pressure pattern is the same whether we are schooling or vacationing, weekend or weekday.  

My questions:

*  Is all high blood pressure able to be controlled by medication?

*  Does uncontrolled high blood pressure indicate an advancement of the cardiomyopathy?

*  Where will this journey likely take me next?

Thank you so much for your time.

Gretchen

[Rachelmek]

I suffer from what is called Polycystic Kidney Disease (google it) which causes chronic kidney stones. Many people have this disease with no signs until they are much older. When their kidneys begin to fail them. The main symptom is high blood pressure beginning as a young adult. why? Because your kidneys are working too hard fighting off the cysts and they are not filtering correctly. I was diagnosed with PKD in July last year after a car accident. I just happened to decide to see a friend who happened to also be a urologist as I did not have medical insurance and knew he would let me pay it out.  He ran a series of tests and came to find I had chronic kidney stones. A total of 6. Just in there. Probably been there for years. If you have high blood pressure on top of chronic stones I highly recommend you get tested. A CT scan is the best way to get diagnosed and make sure you see a Urologist who. If you would like to here more about my story I will happily tell you. Before you get tested you need to know this is a fatal disease and this will affect your ability to get life insurance and affordable health care if you do not have it prior.

[arries]

I've read that the "Normal" adult BP is less than 120/80 according to current standards.  If it's higher then your "pre" hypertensive if it above 130/90 then you should consider medication.  I've read that anyone above 115/75 is at risk, and if either number is high [systolic or diastolic] then that's hypertensive [all from the same report].  It's all still confusing to me becasue I can go into the doctors office with 150/89 and they tell that my numbers are fine.  Sometimes they go even higher when I'm not at the doctors office, and sometimes they are high at the doctors office.  since 1987 at age 25 m,  I had numbers at 160/114 [one time]  other times it may have been 130/88, but it seemed to jump around, and test came back negative [no cardiomegaly], so it was never treated becasue I was considere "labile" hypertensive I began to believe that this was normal for me and started telling people that I'm usually kind of high which I am. Years later I was told that I had an "athletic heart" [so that sound good to me] when I asked what that meant I was told that I had a large heart [okay that's cool, "athletic heart"].  Looking at my records an EKG said Sinus Bradicardia, LVH, RBBB, but I was never really told anything about this because all test came up negative.  In 1995, my records show Cardiomegaly, LVH, sinus brady.  I was taking fosinopril then, but later another intern took me off, but later again another wanted to put me back on something, but I was tired of taking drugs, yet no one mentioned the LVH, cardiomegaly to me.  I just learned that these are caused by untreated hypertention.  I'm still confused;  I seen a private doctor just the other day showing him my clinical history, and he said that I'm hypothyroidism, but I have not yet seen the lab work on this.  He told me to stop the fosinopril and take the thyroid medication, but I have not done that yet because I want to see the lab tests.  The VA gave me fosinopril, but never checked for any other problems like hypothyroidism.  My tongue is swollen, my extremities are always cold and I have according to him a dull heart beat this along with my history he say's hypothyroidism.  Other symptoms are headaches, itching and sometimes rashes, ankle joint pains it used to swell swell for a few years from 1985, and in 1987 all the other symptoms started.  He said and I agree that something happened in 1987 that activated something.  He claims that I probably had hypothyrod since a child and in 1985-1987 it was triggered by the enviromental exposure and stress.  I've had these problems ever since.  It's all still confusing to me because I'm seeing a VA doctor and if one test is negative like an x-ray they don't do other tests.  I have to keep bugging them.  They've also told me that my BP numbers look fine, but yet give me fosinopril after I told them of the 2003 BP standards that I read about, but never bothered doing any other tests.  I have to go to the VA because I don't have insurance.  I'm waiting on the private lab results, so if this comes up positive then I can show the VA and hopefully they will be more proactive.

Is cardiomyopathy the same as LVH and Cardiomegaly?  Sounds the same to me.

[knicks30]

Hold up an adrenal gland tumor can cause flushing?? I expierence flushing alot. I was diagnosed with Hypertension in january and ever since then to today i have been taking 80 mg of diovan, lost 52 pounds, and im 19. My blood pressure right now remains still HIGH at 155/105 but my doctor says its not that high! That sounds high to me. So can this really be secondary causes? I asked the doctor can it be secondary but he looked at a recent blood test results and said that my kidneys are fine.

Here are some questions that hopefully somebody can help me out with.

1. Does the flushing i have could be due to adrenal glad tumors??

2. Ever since i was young, everytime i drink a glass of water or any other liquid i start sweating and start to flush and get hot?? What could that be??

and 3. Can a simple blood test tell you if you dont have adrenal gland tumors?? Or do i need to have an ultrasound right away??

Please i hope someone can write back this is really important to me im trying my best to get my Hypertension under control so any info could be useful...thanks.

[fizzixgal]

I don't think the doctors monitor the comments so you're stuck with us patients... but I was worried that I might have a pheo when my pvcs started because I felt on edge and hyper-adrenergic almost constantly, and my bp was above normal for me. I talked with one of my doctors and what he told me was yes, if you have a pheo you will almost always have flushing and no, there is no blood test that will rule it out. As a first step they usually do a 24 hour urine collection to check for excess catecholamines. After that, ultrasound or maybe MRI.

Usually (but, the doctor told me, not always) pheo will also cause headaches and surges in blood pressure (hypertensive crises). At other times your bp might be normal or near normal.

I don't have a clue about your sweating and flushing, but if you've always had it and only recently developed hypertension then maybe the two are unrelated? Anyway if your doctor says 155/105 is not high then I would look for a new doctor!

[knicks30]

by the way pluto i have lost 52 lbs on diet and exercise just to let you know....thanks!

[knicks30]

My blood pressure at home is fine though like 120-130 over 70-80. And i have a digital monitor and a manual device. I have had my thyroid checked and they found no thyroid disorder. So thanks pluto for the insight.

I will ask my doctor to have a 24 hour urine test to see anything, im trying my hardest to help my blood pressure.

Well thank you for help.

[GretchenP]

As a homeschooling mom, with a grin on my face, I must admit to finding an error in my original post.  

"Neither the Labetalol nor the Altace had no noticable effect on my blood pressure."

should read

Neither the Labetalol nor the Altace had ANY noticable effect on my blood pressure.

[Cleveland Clinic]

gretchen,

1) Is all high blood pressure able to be controlled by medication?

No some people have refractory hypertension. This is a red flag to look for secondary causes for the hypertension.  These include things like pheochromocytoma (which can be associated with flushing.) and renal artery stenosis.

2)  Does uncontrolled high blood pressure indicate an advancement of the cardiomyopathy?

No probably not. But uncontrolled hypertension can lead to further damage.

3) Where will this journey likely take me next?

I think it should take you to your doctor to work on getting your pressure under control. You should also discuss the use of a diuretic unless you have a contraindication.  Then each of your medications should be maximized. If you are maximal doses of several medications and a diuretic or there are signs of secondary causes of hypertension they should be pursued while getting your blood pressure under control.

good luck.