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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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Just gotta ❤️ older age ....this isn't what I thought retiring was about regarding health issues for me 🤔. Hugs to everyone !
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1 ReactionHas anyone with Baroreflex failure drank Electrolytes for dehydration if you have, did you have any effects from Electrolytes consumption ?
I give my husband water with liquid IV in it as soon as he gets up in the morning
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1 ReactionDid his bp, steadiness. and overall felt better ? I feel a lot better when I drink water w/Electrolytes, my bp starts coming down some, of course surges when Electrolytes start wearing off because my body can't regulate fluids.
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1 Reaction@56tburd,
I was browsing the blogs this morning and saw your post and all the responses. I live in the Phila area and was treated in 2008 (squamous cell left tonsil and lymph node). I experience much the "normal symptoms" and also have BP issues, cardiac thickening, neuropathy (hands) to name a few other issues.
While Dr. follow up is critical for all of us, I appreciate the chance to benchmark symptoms. At least I know I'm not going nuts or it's simply old age catching up with me (I'm 66)!
When I mentioned possible baroreceptor issues/radiation side effects to my GP, he downplayed it. So, to confirm what we all know, stay vigilant as the long-term side effects of Head and Neck Cancer treatment are not heavily studied. I read elsewhere, that is because long term survival rates are pretty good.
I wish everyone well and hope we continue to communicate our experiences/symptoms on blogs like this.
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2 ReactionsHis blood pressure surges to dangerous level at night. I woke up one night with him convulsing because bp was so high. Now he takes 100 mg of Losartan an hour before bed. I still check pressure at least twice during the night and there are times he is still in the200s. He then has to take .4 mg of nitroglycerin to get bp to come down.
So, often when he wakes up his bp is very low. That is when he drinks about 16 oz of water with liquid IV in hopes bp will go up. It’s a struggle to get his daytime bp in the 90s.
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1 Reactiondoes he have loud ear Tinnitus when bp surges ? because I do and lightheaded when standing intermittent. Hugs to both of you and he's very lucky to have you by his side.
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1 ReactionHe’s never mentioned the tinnitus. I can tell when his bp is high because he is very flushed.When low, he does have lightheadness. When he walks, it looks like his legs are noodles, but he’s only fallen once.
This is very difficult for both of us. How about you? I pray you have someone by your side.
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1 ReactionI got rid of my significant other years back....my adult son lives with me and he helps keep me sane for the most part.
..🤔🧐
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2 ReactionsI failed to mention that my experience with baroreceptor failure went unnoticed as it hit primarily while I was sleeping. It's called nocturnal hypertension. My blood pressure (BP) had always been good, so it came as a surprise the first time I experienced it during the day. The ER Dr. kept asking why I hadn't been addressing my BP issue because of the damage it had already done. My PCP didn't know to keep an eye on such a thing because it was always excellent in the office. So, make sure you check your BP regularly, and do so at night as well.