7 Hypertension meds - Ughhh

[Salgal3]

I have written on here before. I have had high BP for many years. Some years have been better than others. Over the last 2.5 years since moving to Colorado my BP has been the worst it has been. The worst has been 230/150. Last year I was in ER 3 times and in the hospital for week. It is definitely under better control but at a cost. I currently take 7 meds for hypertension. Is there anyone out there who take that many? Basically I have labile, essential (malignant) hypertension. It can drop over 100 pts in a day. At this point the tests say I don't have a pheochromocytoma or renal stenosis. I have great doctors but when it gets low I feel super bad. Anyone have symptoms like me?

[smtate1120782]

hi I also have malignant hypertension my highest reading was 300/200 I have also had alot of test and they can't find a cause my blood pressure is still not under control it's my lower distolic numbe for me now that is high in the morning it can be as low as in the 70s but shoots up to 120 during the day I feel you pain .I'm currently on 4 different tablets but doc wants to add more I've got a month to see how I get on as my tablets have just been increased.

[Salgal3 in reply to smtate1120782]

Oh my word that is high BP! Even though I take 7 meds I have seen improvement. It is the labile part that is hard. What meds do you take if you don't mind me asking? I am curious to see what others are taking. Please keep us updated on your progress!

[Jumpey]

Hello, that sounds really rotten. My heart goes out to you. Do they know why your bp is so volatile and what causes it? I am assuming that you are doing all the lifestyle things that help-keeping weight down, eating well (inc.low salt), exercising, reducing stress etc.. My bp was 250/100 before I was treated. I have been lucky. After lots of experiments with drugs it is now relatively stable on Felodipine. I can't imagine how you must feel.I hope someone on here can offer some help.x

[Salgal3 in reply to Jumpey]

Yes I have made changes. I need to lose about 25 more lbs but the side effects from the meds have made it hard to get to the gym. I am has done a ton of tests but nothing is definitive. Calcium channel blockers can be very effective. I take Quinapril. Unfortunately it is not enough for me. Thanks so much for the reply!

[Jumpey in reply to Salgal3]

You're welcome. good luck.x

[Anonymous-]

Hello,

I'm glad to hear from someone who has "volatile" blood pressure. I can very much relate and understand your concerns. For both Salgal3 and Smtate1120782, what is the cause of your malignant hypertension?

I have been battling extreme volatile blood pressure for the past 14 years. The experience of countless specialists in several states and much expense, has been very exhausting. Below are some thoughts that you may want to read about, that I've learned along my journey. They can be possible causes of volatile blood pressures.

1) Baroreceptor Reflex Failure - mc.vanderbilt.edu/root/vumc...

"...a rare disorder characterized by change of blood pressure with episodes of severe hypertension (high blood pressure). There can be increased heart rate during stress and hypotension (low blood pressure) with normal or reduced heart rate during rest."

2) Fibromuscular Dysplasia: fmdsa.org/

"...is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur. If narrowing or a tear causes a decrease in blood flow through the artery, symptoms may result."

3) Dysautonomia: dysautonomiainternational.o...

"... an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System."

4) Malignant Hypertension

5) Pheochromocytoma - I've been tested countless times for this and don't have it.

My blood pressure is all over the chart. It often goes straight up like a rocket, and can also fall just as quickly. And then, there are times when it is normal (usually when I'm less active and everything is quite). It is common for my blood pressure to swing 50-100 points in less than 30 "seconds" - yes seconds. The surges typically go to 230ish/160ish (historically causing massive headaches), while the falls are typically 80ish/50ish (which make me so drowsy that I can hardly stay awake). The falls can be related to position changes (lying or sitting to standing) but not always. It often falls that low while just sitting at my desk. The lowest was 50ish/30ish, while the highest at least twice was over 300/200. Stress is a catalyst for the blood pressure surges, as well as being in a hurry, or even just talking about my blood pressure. Fortunately, both times, doctors were able to assist me. The first time, I was already in the ER for my blood pressure, but it kept going higher and higher, to the point that it cut off my breathing (I turned very dusky and blue all over) and while causing a prolonged grandmal seizure. At the point that I eventually collapsed backwards from no oxygen, the doctors revived me. My brain swelled and I knew nothing for 3 days. It is very difficult to live this way, and for so long. I have tried numerous medications. During the past 14 years, I have been diagnosed with 1, 3, and 4 above by various specialists, except FMD which I'm scheduled to be evaluated by the Cleveland Clinic in November. So many doctors have always tested me immediately for pheochromocytoma, as I fit all the classic symptoms, but I do not have this. Neuroendocrine tumors were also ruled out.

I welcome the replies of anyone. I would also be very interested in communicating with anyone who also struggles with similar symptoms. Please email me at [e-mail]. Thank you.

[Salgal3 in reply to Anonymous-]

Man I am so sorry your situation is so bad. I have had some of the same things. I have been tested for a pheochromocytoma a few times, renal stenosis and a number of things.

Being on the seven meds has helped with bringing it down but I still struggle with the labile part. I am asymptotic with the highs but the lows are horrible.

I feel like for the first time in years I have finally found a great doctor (renal hypertension) who has been on top of my case. He also teaches at the med school and has brought my case to his students and other colleagues. I think for now taking all these meds is hard and expensive but working better.

One thing I forgot to say is that I tested positive for secondary aldosteronism. I take spironolactone to counter act that. I take the max currently which has brought my levels to a better spot. So basically my aldosterone and renin are high. But the meds have helped that out. Have you been tested for that? Even though that is under control I still struggle with the malignant hypertension.

Please keep me updated on what you find out.

Thanks!

[smtate1120782 in reply to Anonymous-]

hi sorry for the late response I've had every test going can't find a reason just waiting on growth hormone test results and cortisol levels which doc seam to think they should be fine ....no family history. ...just high blood pressure. ..I have a slightly narrowed renal artery but they don't think that's the problem. ..feel for you sorry to hear of your struggles ...keep strong

[Princessindia]

Thank god your alive...with pressure that high ...that's a lot of medication you take be careful ...

[MBD30]

You poor thing, I hope you get this sorted 😊

[Hbp200]

I to have had extremely high blood pressure since l was 16. Without meds my pressure is usually around 290/250. I was a test subject for Omrons development of a pressure device for measuring pressures over 300mm systolic. My systolic at it's highest was 385. My diastolic was 320. I currently take 10 pressure pills along with once weekly intravenous Labetalol. Even with all that medicine my pressure is still high at 162/106. My venous pressure is also very high. I have hypertensive heart disease, hardening of my arteries. I am going to be on 20/20 next month. They are doing a story on hypertension. During the taping a microphone was placed in the stethoscope. The audience gasped as the artery sounds began at 288 and stopped at 270

[Hidden]

Hi yes i do, i have battled it for years the drugs make me feel awful, i take them for a few weeks and i just sink into a black hole of lethargy and tears. Then i stop them and up it shoots into 200's back in to A&E back on the cycle again, i now have other heart problems too caused by long standing uncontrolled bp. I am 60 and i haven't worked for 2 years. I've been referred to a blood pressure clinic in feb so we'll see what they say. I'm so sorry i don't have anything helpful to say because I'm on the drugs at the moment. X

[Sphygmogirl90]

I was on 9 pills. Now I get weekly IV meds.

[Sphygmogirl90]

I am currently take 8 pressure pills as well as weekly IV Lopressor. Last week my pressure readings skyrocketed to 325/305 measured using a Arterial Line. When the line was removed my blood shot across the room!