High BP, meds don't work

[phebamom]

I am 67, female, moderately overweight, 5,8, 165# . Moderate hypertension for many years, well controlled with Losartan. Losartan stopped working, placed on Valsartan, which is basically Losartan with a water pill. Several months ago developed high BP, averaging 180/105 upon awakening, dropping to about 150/85 during middle of day. BP then starts creeping back up and is usually 180 to 185/105 by bed time. This morning it was 193/116. I have had 6 different BP meds prescribed. Doxazosin, I was allergic to. Also several others. Nothing worked. Now I am on 80mg x 2 of Valsartan daily, and 1-1/2 Carvedilol x 2 daily, 25mg.

I also have a vascular illness called Giant Cell Arteritis. In treatment for that for several years. On prednisone and a drug called Actemra, a monthly infusion. I missed my treatment last month of Actemra, and went without it. Blood pressure did not improve so do not think the Actemra is the cause.

My blood work and urine tests show blood and protein in both blood work and urine. Creatinine is elevated.

I am scheduled for a kidney ultrasound the 26th of January. Cardiologist mentioned testing something called Aldosterone, but has not done so yet. Seems like since Covid the medical system in US is moving more slowly.

Another person on this site posted that they had a similar situation and it ended up being Conn's Syndrome, or adrenal glands producing too much aldosterone. Has anyone had a similar situation?

I am a very nervous person. But, taking Zanax, or Valium has no effect on BP, and just makes me prone to falling down at night.

I also have an oddly swollen abdomen, especially when lying flat. Profound fatigue, and problems with focusing.

[Happyrosie]

Phebamon, I'm sorry for your medical troubles especially that rare one, Giant Cell Arteritis. I really have no useful comment to make, other than about taking your blood pressure.

When I take my BP at home, I do it at around the same time each day after having sat down quietly for at least ten minutes. This creates a sort of "standard" against which I might want to measure any ups and downs. You will know, I expect, that your BP goes up and down all the time during the day depending on what you are doing.

I'm sure your doc will already have given you advice about diet and exercise, cutting down on salt and having a wide variety of vegetables.

I wish you well.

[cuore]

In my case, my potassium level was low, so I was tested for aldosterone which was the culprit. My adrenal glands are producing too much. I now take Spironolactone which has greatly helped.

[phebamom in reply to cuore]

Thank you for posting. I am suspecting aldosterone. Did your high blood pressure have a pattern. My BP is high upon arising, goes down some midday, and shoots up when I sit in my recliner in the evening. Even with evening Valsartan and Carvedilol I still have high BP all night, My husband suspects posture plays a role. Sitting in recliner and lying flat seem to make it go up. We are wondering if pressure is being put on kidneys/adrenals.

[cuore in reply to phebamom]

I am taking my blood pressure only in the morning, so I am unaware of my pattern. It is accurate that bloods pressure varies during the day. I will do some research as to nighttime blood pressure and get back to you.

[phebamom in reply to cuore]

Results of sleep study . Saw sleep doctor today. I stop breathing 54 times per hour with an O2 of 72 percent. Will post more after ultrasound of kidneys, which is next test. Get CPap machine later this week. I do not snore. My uvula hangs down at night and chokes me. I have a tiny airway.

[phebamom]

Boy was I naive , still no sleep machine. There is a shortage of machines, the cpap office lost my doctor's request. Still a.m., and p.m. of 180/105. Can feel now that it is sleep apnea causing high bp. drops dramatically as soon as i get out of bed in the morning . Goes up at 9:00 p.m. I am guess because my body is gearing up for what is coming. Sleep doctor said I would continue to spiral down and die if this is not treated. Also told me I could easily die in my sleep. So what does the Cpap ofifce do; they lose my request for a machine. I am not fat, being about 15# overweight, at 165# at 5.8 inches. I am 67, female.

[Witney2]

I use a CPAP machine for Sleep Apnea and have done for several years.Like you, I found the NHS lacking so eventually gave up and bought my own.

[phebamom in reply to Witney2]

Hi: I am in the US. There was a big recall in the US last year so now people are scrambling to get a machine and supply can't keep up with demand. Neither the cardiologist office, or the sleep Dr. office are returning my calls. I think since the pandemic the US medical system is overwhelmed and understaffed. Does sleep apnea cause you to have high blood pressure? I am having an ultrasound on kidneys and adrenal glands next week.

[Tr33cy]

did they find a tumor on your adrenal glands? 6 medications and BP still high is definitely suspicious of Primary aldosterone/Conn Syndrome issues.

Please try asking questions to Dr. Grim here hyperaldosteronism.groups.i...

He worked with Dr. Conn and despite being up in age himself, is very responsive, as are the other community members (I have PA myself and notice a lot of similarities in symptoms based on your posts.

Elevated BP at night is common symptom. So is numbness. Do you have to get up frequently at night to eliminate?

[phebamom in reply to Tr33cy]

I am sleeping 4 plus hours without getting up to pee since starting CPap. Honestly, I was hoping it was Conns so I could finally get some answers and some relief, but it seems my case is more complicated. I believe several issues are contributing to resistant hypertension, kidney disease, I am showing protein and blood in urine, and elevated markers for kidney disease. Giant Cell Arteritis, which is damaging blood vessels, sleep apnea, which is stressing my heart, genetics ( mom had high BP). I also have complex post traumatic stress disorder and have had severe anxiety for years. When I get upset or nervous BP really shoots up. Finally, central and surface lymphedema. I am receiving treatment for all of these issues. It is just frustrating at how slowly things seems to resolve.

[Tr33cy in reply to phebamom]

were you able to confirm that it's not PA? I had anxiety issues previously too. Ongoing high BP causes a lot of damage. Far too many doctors misdiagnose PA (it took them 13 years before they dx mine accurately). Make sure you find a doctor who is actually knowledgeable and can do the due diligence in checking for PA. I'd try emailing with Dr. Grim and see what he thinks

[phebamom in reply to Tr33cy]

Good morning: I wish my problem was as fixable as Conn's Syndrome. I also assumed that was the issue. My doctor tested for Conn's. All blood work came back normal. Sodium and potassium levels are normal. I have signs of infection all of the time, and anemia all of the time. My kidney numbers are not good, but holding stable right now. Kidney disease can also cause all of these BP issues.

[Tr33cy in reply to phebamom]

okay. So sorry! Hope you're able to get to and resolved the issues soon!!

[phebamom in reply to Tr33cy]

I deeply appreciate your concern and input. I learn and share so much on my support groups. I have learned that everyone has a story. We all have struggles and triumphs. In my mind the sorrows are halved and the triumphs are doubled when we share them. Have a great day,

[Tr33cy in reply to phebamom]

you too!!!

[Windmill6 in reply to Tr33cy]

Hi Tr33cy, I am struddling with my conns disease. I had 10 years to diagnosis , but now I have really unpleasant symptoms from all that high bp previous. My stomach is constantly bloated and uncomfortable, like I've eaten a 10 course meal when I've had a sandwich! I am lightheaded,constantly tired and have pain in both shoulders.

I am so exhaused I can barely exercise.

Am so cross with my Dr's, they treated me for anxiety when it was Conns,am based in uk. Any advice?