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TORMENTED by white-coat syndrome, please help
My post is kind of long, so please bear with me. In February 2012, I was diagnosed at 26 with a blood clot on my heart which caused congestive heart failure. Doctors still don’t know what caused it, as I had always previously been healthy, have no congenital heart problems, etc. They also never knew what came first, the clot or the CHF. I spent two weeks in the hospital on heparin and other meds and thankfully recovered and am doing fine these days except for this new problem I’m going to tell you about. I was also put on many different medications (one of which to keep my blood pressure stable), a couple of which I still take today just to be on the safe side, and I never miss a dose.
In September 2018, I went to an oral surgeon to get a wisdom tooth with a cavity removed. I was also diagnosed with anxiety and OCD back in 2006, and I’ve always had varying degrees of anxiety in medical situations, but for some reason it’s been astronomical for about three years now.
Anyway, the nurse continued to check my BP because it remained very high (around 180) due to my anxiety. The oral surgeon eventually decided to call off the procedure (he removed the tooth successfully at a later date) and sent me to the local stat care clinic due to his concerns about my BP.
While there, I endured more BP checks and an electrocardiogram, all of which had equally worrisome results due to my anxiety. I was eventually hospitalized and given an IV which finally brought down my BP. That night, I was able to finally leave the ER with a clear bill of health
Needless to say, I had been terrified out of my mind at every corner that entire day. The doctors had me believing that I was developing another heart condition or even that I was dying, which is my absolute worst fear.
Because of all this, I’ve developed an INTENSE fear of having my blood pressure taken. A month after that day, I had the tooth removed successfully by the same oral surgeon, and my BP remained at an acceptable level that day (I guess because of the IV I was given). But my BP has been taken a few times by other doctors since then whenever I go for yearly checkups with my dermatologist and cardiologist, and it’s always very high, even after taking one milligram of Klonopin before I go.
I told my cardiologist and his nurse about the incident right after it happened, and they fortunately understand my problems with anxiety. The nurse even told me that she’s seen patients during heart attacks with BPs up to 300, and that my BP will never be that high. But this still didn't ease my anxiety enough.
My cardiologist didn’t make a big deal whenever my BP was high during my appointment with him last year. But I’ve got another yearly checkup with him on Monday, and I’m already DREADING the thought of having my BP taken and an electrocardiogram performed on me despite those having been standard procedure for me for many years now.
I’ve been having yearly checkups with him since 2012, and I was always somehow able to stay relaxed during them. But ever since my hospitalization, it seems as if that can no longer be the case. I’ve gained a bit of weight since then, so maybe that combined with anxiety is causing my high BP. I moderately swim an hour a day whenever I can, and I always physically feel fine.
I DESPERATELY want to overcome my fear of having my BP taken. I know this will involve taking it myself at home, but I’m even too terrified to do that because of how high it may be. I’m worried I’ll need even more invasive tests done on me. The reason I have so much fear about this is because high blood pressure is such a serious issue. Nothing reassuring is ever said about it. I guess what I need is hard medical proof that everything will be okay before I can even begin to consider taking my BP myself.
AlyAHA, March 20, 2020 10:30am EST
Nutfig, I'm so sorry you are feeling so much anxiety about your blood pressure. My grandma had horrible white coat hypertension and she became obsessed with taking her blood pressure at home. I have some advice to overcome your fear of taking your blood pressure at home, but most importantly continue to see your doctor on a regular basis!
As with everything in life, keeping a schedule reduces uncertainties. Try to take your blood pressure around the same each day for a few weeks. It is recommended to rest for at least 5 minutes prior to taking a reading, so use this time to breathe deeply or practice meditation. Visualize yourself on a beach, hearing the calming waves hit the sand. The simple of act of having a routine to follow and making this a calming practice should help. Perhaps do you live with someone who could look at the reading and record it in a notebook for you?
This visual can help you get situated with the proper posture, and adjust the cuff properly: https://www.heart.org/-/media/files/health-topics/high-blood-pressure/how_to_measure_your_blood_pressure_letter_size.pdf?la=en&hash=58005C0F0AC9C9AACAA3089070B54E0F74695E95
For now don't focus on the numbers, focus on the process and make this a calming routine. You can do it!
survivor09, March 22, 2020 1:01pm EST
I'm so sorry you are having these problems. This is obviously traumatic for you but somehow you need to be monitored properly. There are many different ways to have your blood pressure taken. There are now devices you can get where you can take your blood pressure with your smart phone. No pressure cuff, no machine beeping, no nurse standing over you, no clinical setting.
Also, when you are at the doctor's office, are they doing anything on their end to help lessen your anxiety? If not, I would ask them if they have any suggestions about how to get this done while lessening your anxiety. Perhaps a log of your BP on a day to day basis would suffice for your doctor? It's definitely necessary to talk with your doctors about this.
I'm sorry you have this chronic condition. It's a lifelong process handling it which sounds daunting but in time it will become second nature. As AlyAHA noted a routine can help. Any anxiety problems should be addressed with your doctor as well.
My favorite thought for you is if you would be able to get a service dog. For some I know it's not an option but if it is for you it might be a wonderful companion at your doctor appointments.
Let us know how you are doing,
Nutfig, March 23, 2020 5:54am EST
AlyAHA and survivor 09,
Thank you both so much for your replies.
Some good news: My annual cardiologist checkup will be moved from today to a later date. The nurse called me and said as long as I'm feeling fine (which I am), then we will reschedule my appointment in about three months. Due to the coronavirus, they can only take extremely serious cases right now.
I know that this was a sign that I need to use this extra time to become accustomed to taking my blood pressure, which I am determined to do. I will follow the advice yall have given me and keep yall updated.
AlyAHA, I live with my folks, so I can probably get one of them to take and record my blood pressure.
Survivor 09, the nurses who take my blood pressure at my doctors’ appointments seem to usually be understanding, but I get the feeling they could do more. My OB-GYN’s nurse had the best response so far when I told her my problem at last year’s appointment. She took my BP, told me it was a little high (I prefer to not be told the actual number if it’s high), and let me sit down on a couch to relax a bit. After my visit with the doctor was over she took it again while I laid on the table and breathed deeply, which also helped. It was still high (160, but she said that was lower than the first time), but I definitely think the couch idea as well as my deep breathing helped bring it down a little. At my dermatologist appointment in January I asked the nurse who took my BP if I could listen to music with my phone earbuds while she took it. She said yes (my mother was in the room with me and did most of my talking for me ha). I really thought the music would help, but my BP was around 170. After the examination, the nurse checked it again, and I think it was only a little lower.
I don’t have a smartphone but will definitely order one; it would be SO MUCH easier on me without the BP cuff. Also, I own a small dog I adore and would love to be able to take her to the doctors with me. I don’t know if it will be allowed, but I will definitely ask them.
I wish for both of you to remain well during this coronavirus mess and for yalls health to always continue to improve.