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Head and Neck Cancer and the possible consequences.
I am a survivor of squamous cell carcinoma at the base of my tongue. I'm now 18 years out. Everyone seems to have the usual problems, and I'll tell you it can get better, or maybe I've just gotten used to it. However, I just read a recent article about the underdiagnosis of baroreceptor failure, and thought I should contribute my experience to make others aware of the possible side effect.
Eight years ago, while taking my BP after experiencing a mild headache, I thought my cuff was broken. My BP had always been good, and there had never been an indication I was having problem. I went to Urgent care to have my cuff checked, and my BP was still in crisis stage. They escorted me to the ER. The Dr kept asking me why I wasn't being treated by my PCP. $4,500 later, I was diagnosed with baroreceptor failure.
I was told by the cardiologist who made the diagnosis that I'd have to learn to live with it. Another told me I wasn't their bread and butter, but he did refer me to a "fall" clinic due to the syncope I was experiencing. No one see to have an answer on how to treat this. I quickly learned that taking BP pills is a crap shoot. You keep trying until you find something that works. Unfortunately, there are a lot of side effects you have to deal with in the interim.
It's been a real experience trying to manage the problem. I'm either over medicated and repeatedly crash, or undermedicated and the spikes are frequent. Hypotension has the worst symptoms, especially when my BP drops down below 80/50. My vison blurs, and I feel like I've been run through the ringer. However, it is the hypertension that does the most damage.
I've experienced a dilated aorta, thickening of the heart walls, possible lung scarring, and who knows what else. I track my BP several times/day and medicate accordingly. Metoprolol, combined with hydrochlorothiazide, was effective in reducing the hypertensive spikes without too many hypotension incidents. Unfortunately, I developed a serious cough with it and had to stop. I'm currently taking Losartan, 10mg, along with the Hydrochlorothiazide, 12.5-25mg, as needed. The peaks and valleys are still significant, but not as severe, for the most part.
It is unclear whether it was the radiation or the surgery that caused the problem, but I believe it is imperative if anyone goes through such treatment, they monitor their BP to catch the problem early. I wasn't made aware of the problem as I think it wasn't well understood by caregivers. Good luck to you all.
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I'm so glad that I looked up information on Mayo's group discussions. The professional providers in NC that I've seen, didn'thave a clue regarding Baroreflex failure issues that I mentioned to them in 2022. I had to be admitted during 2022 after being overdosed on bp meds by my providers. I ended up with ischemic colitis heading
into Sepsis then. Barometric pressure- cold front really affects what my day will be like. So, thank all of you for allowing me to be a part of Mayo's support groups.
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2 ReactionsWe have to check my husbands several times during the day as well as during the night. I’ve woken up to him having a seizure because his bp was so high. I check it 2 times during the night. Our bed is on 6” risers and he takes 100 mg Losartan before bedtime
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1 ReactionI was rushed to the ER last July because my Nephrologist stopped my Atenolol several days before the ER visit and put me on Metoprolol 50 mg. a day. I went into AFIB, the ER then put me on Losarten 50 mg. that put me into AFIB again plus a lot of severe side effects. I, like other peeps with Baroreflex failure have to take my bp several times a day to know when my bp spikes. Several medical professionals don't seem to understand why I have to do this ( they think I should only take bp readings approximately twice a day). They aren't looking at my complexed health history as a whole picture linked to this. How does the medical professionals advance when they're not willing to think outside of their comfort zone ?
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1 ReactionDoes your husband drive ? I'm really concerned that my really high bp will eventually take my driving ability away because my bp keeps climbing. I just got up from a nap and my bp reading is 210/107 heartbeat 58- I took Atenolol 12.5 mg before I laid down and bp was 153/78 heartbeat 58 @ 10:45 am this morning. Baroflex Failure causes me to become very Fatigued.
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1 ReactionHe hasn’t driven in a few months. He has had 3 seizures because his bp went so high. Now he is on Kepra, an anti seizure med and doc said no driving.
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1 ReactionThank you for that information. Driving is my solitude to stay somewhat sane....if that is taken from me eventually, then I don't know regarding my sanity. My balance is really bad sometimes walking (btw: I use a walker when I'm walking) because of being lightheaded when bp fluctuates. I'm good to go as long as I'm sitting. I feel for people who have Baroreflex failure , because it's a roller coaster with sharp drops and high spikes in any given time. This is a nightmare that you don't get off of. Hugs to everyone !
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1 ReactionI sometimes feel like I’m living with a human time bomb😢
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1 ReactionThat's exactly how I feel ! Hugs.....
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1 ReactionI have a question for those of you who has Baroreflex Failure, if that's okay. Does anybody else get very dehydrated if they don't drink 3-4 bottles of water a day 🤔..... because having Baroreflex failure, the body can't balance fluid intake. Also does anyone have really bad balance because of this ?
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1 ReactionSince my ability to swallow has been impaired due to the cancer treatment, I consume large quantities of water at mealtimes, along with several bottles of water throughout the day. Even so, during hot weather, I've found myself getting dehydrated. As a carpenter years ago, I use to walk on 2x4 walls without any problems. Until 15 years ago, I never fell, easily catching myself if I stumbled. Today, I often find myself tipping over, and age has made it more difficult to catch myself. Until I got my BP meds straightened out, I fell too often, and I am still concerned about doing so. I don't bounce like I used to.