Today I want to talk to you about blood pressure. Not the normal elevations that come with lifestyle choices, or the type that comes with age. Not even the kind that come with a blockage in the heart.
I’m talking about the changes that occur for no reason.
The Progression of Symptoms
For years my husband has struggled with high and variable blood pressure, beginning in 2012 when a dizzy spell sent him to the emergency room. They diagnosed him with hypertensive crisis, and over the course of a few weeks he received a full cardiac workup that ended with a stent placement. Medications followed, as did the advice of to cut out the salt, stress, exercise more, lose weight, and quit smoking.
We set out to do everything possible to keep this from happening again, but needed a place to start. His labs showed his cholesterol was perfect and his arteries were clear. His A1C was great. The kidneys worked perfectly. There were no deficiencies in his diet that a multivitamin couldn’t fix, so we figured the answer had to be more exercise, less caffeine, and stress reduction.
Where To Go From Here
We began walking when he was off work or finished early.
We reduced stress at home as much as possible, began meditating, and reduced caffeine intake. Two of our children became ill during that time while another struggled with ADHD in school, but we did our best.
He took his medications as instructed, went on a calorically restrictive diet, and cut out red meat. He even quit smoking for a while.
His blood pressure didn’t budge. More medications did nothing. The numbers kept rising. Soon his daily BP readings were in the 160’s and he couldn’t drop any weight no matter what we did.
Then one day it changed. His blood pressure dropped until it was reading in the 90’s. He was having trouble thinking and performing tasks. The doctor said to make sure he was getting enough salt, and the medication would stay as it was. Eventually he had to titrate off the medication. His regular readings were in the 130’s, but for no reason at all it could drop twenty, thirty, or even forty points within five minutes.
No one believed us. They said blood pressure doesn’t do that. It only raises drastically when there is a vascular blockage. He must not be following the diet or he would be losing weight. Was he telling the truth about cutting out coffee?
Another Surge of Symptoms
We decided to change doctors. Everything was fine until two years ago when it happened again, only this time his blood pressure started reaching the 200’s. Another cardiac workup, six medications later, and three weeks off work netted no new information. No blockages, the kidneys looked great, and his arteries were supple. The cardiologist released him to return to work without ever having found the issue.
While under the cardiologists care we were told that it was just because he was getting older. I read the term “idiopathic hypertension” and thought that could be why he was ill. All the information out there is about hidden blocked arteries, kidney dysfunction, sleep apnea, and coronary artery disease. None of these matched his symptoms. I asked the doctor about these things and it wasn’t a discussion he would have. We began to look at changing to a whole food plant based diet (Thank you Dr. McDougall! ) After one week on this diet we had to quit because his blood pressure began dropping into the seventies and eighties, and his heart rate plummeted to the mid-forties. The doctor said he needed to change his diet back because he could not come off the medications.
Within two months his blood pressure returned to normal levels and again and he began eating the Mcougall diet more often and tapered off meat. I would love to say this was how it stayed, but lifestyle changes are hardest and eventually we started eating meat more often. That’s when we began seeing a return of sumptoms from a condition we didn’t know he had until now
The Latest Development
In July of this year he started getting short of breath with daily tasks. By this point he had been living with other symptoms for years that we thought were separate from his high blood pressure. Bouts of unreasonable anxiety and a constant headache that he attributed to muscle tension from his job. Anger, with bouts of rage, would occur while relaxing outside or while working. One of our friends told me about his dizzy spells and getting pale at work. His allergies were bad this summer and we had stopped going to the gym. We hadn’t taken his blood pressure for a few months. By August he felt so poorly that he looked at me and said he needed to go to the ER. So we went.
Again we went through the cardiac workup, except this time his blood pressure was so high that it collapsed the stent placed in 2012. It was reading 270/130. Now he has some slight blockages that can be managed completely with diet and exercise. After a few ct scans the cardiologist said he had no idea why my husbands blood pressure was high. He had zero blockages that would create this kind of blood pressure. The cardiologist re-inflated the old stent with a new one, and his job was done. But we still didn’t know what was wrong.
Lucklily a doctor in the ER had believed my husband about the rapidly rising and falling blood pressure. Believed him about the steady diet and lack of weight loss. He ordered a test that saved his life.
They admitted him to the hospital, and during that week of monitoring they also did a twenty-four hour urine catch to check his catecholamine levels. It came back thousands of percents higher then normal. His body was flooded with epinephrine, noroepinephrine, and cortisol.
Epinephrine, also known as adrenaline) narrows blood vessels and increases the force that the blood pumps through the body. Norepinephrine (also called noradrenaline) …” increase(s) the force of skeletal muscle contraction and the rate and force of contraction of the heart.” Cortisol controls things like blood sugar levels and memory formation. Excess cortisol can cause things like rapid weight gain in the abdomen, high blood pressure, bruises and purple stretch marks, mood swings, increased thirst and frequency of urination, flushed face, and muscle weakness. It can even cause quick forming cataracts (according to our eye doctor).
What did all this mean?
They believed he had an adrenal tumor called a Pheochromocytoma, or “pheo” for short. All they had to do was get a good picture of it.
Over the next few months we began reading more on what it was and how it was treated while waiting for first 1) treatment plan, and 2) a surgery date. It is considered rare (which is why no one ever found it) and joked that now we were both zebras! (Zebra is medical slang loosely meaning “a rare, unusual, or surprising disease or condition.” You can find more info on what they are here.)
The Endocrinologist ordered an MRI to confirm the diagnosis. She also prescribed an alpha blocker Cardura (also called doxazosin) before the surgery. My husband was on bed rest for three months. There was a total of five trips to the ER, four hospital stays, one surgery, six doctors, and too many appointments to count during this final flare up.
His BP stayed too high, and dropped or jumped at a moments notice, so he couldn’t walk around or exercise. They thought he had sleep apnea so he got a cpap machine. A total of nine medications were taken daily to regulate his heart rate and blood pressure. His fasting blood sugar varied wildly, from 100 when waking to 220 upon waking, so we had to monitor it often. They feared putting him on medication because it would drop suddenly, just like his BP. He slept sitting up because often his blood pressure would skyrocket when he laid down, one time jumping to 290/150 from 170/80 in less then five minutes. He developed cataracts in both eyes within six months.
We finally got an appointment with our surgeon. His office and the endocrinologist called back whenever I needed them, as it happened more often then not I would have to call about adjusting medication for the day because of a sudden drop or jump in BP.
They scheduled the surgery for November 22 and we waited.
The day of surgery was terrifying because it was dangerous. Once the adrenal gland was removed they would need to fight to keep his BP from dropping drastically until his other adrenal gland kicked in. I kissed him before they took him back and waited. It only took two and a half hours.
Finally the surgeon walked and and smiled. My husband came through with flying colors and his blood pressure was stable! I hugged him and cried. He told me the tumor had nearly doubled in size over the last month. If the diagnosis had taken longer he may not have made it to see Christmas.
My husband and I spent the last three months living with the fear that one day he wouldn’t wake up. We spent every day loving each other and appreciating our time together. We got the pathology report back to learn that it was benign.
This has been the best Christmas Gift I have ever received, and it’s all thanks to a handful of doctors that listened, believed their patient, and saved a life.
A life that impacts so many every day.
No matter what chronic illness you may have, you need to find ways to take care of you, through good days and bad. Check out my tips for living with a chronic illness here.