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@56tburd
I had radiation and chemotherapy for SCC base of tongue about 16 years ago. The radiation resulted in a series of side effects which have compromised my quality of life. Aside from the short term side effects of mouth sores, loss of taste and trismus, I had long term side effects that were detrimental. I experienced loss of bone due to osteoradionecrosis of the jaw and loss of a few teeth, xerostomia (dry mouth), esophageal stenosis from scar tissue resulting in dysphagia and a feeding tube dependency for nutrition and hydration, Radiation Induced Brachial Plexopathy (RIBP) and significant loss of function, strength and increasing numbness of my left side hand, arm, shoulder and neck. More recently an episode of Bell's Palsy treated by administration of prednisone, resulted in atrial flutter which eventually was relieved by electroversion and ablation. However, nagging symptoms of dizziness and syncope continued especially with postural changes (orthostatic hypotension) from sitting or lying to standing. After experiencing frequent falls and extraordinarily low blood pressure and sometimes very high blood pressure, I was able to see a neurologist at Mayo Clinic and after 4 days of testing the diagnosis was Baroreflex Failure. It was the first time I heard of this problem, but it is the most debilitating because it is challenging to treat and almost impossible to normalize my blood pressure. I take a small dose of medication to raise my blood pressure in the morning along with another short acting medication as needed, but usually just once in the morning as that is when my symptoms of low blood pressure, dizziness and fatigue are most common. You are the first person that I have heard of who has this side effect but if I had not gone to Mayo for a diagnosis, I would be struggling more than I am now. My new "normal" isn't great but it is comforting to at least know the cause of my symptoms and get partial relief. These things that appear many years after radiation therapy like Radiation Induced Brachial Plexopathy (RINB) and Baroreflex Failure can be difficult to diagnose as their onset is so far from the cause. Orthopedic specialists were convinced that my problem with my arm and hand numbness was related to a C6 nerve problem or carpal tunnel problem. Even though there is no cure, the diagnosis is important to prevent going through unnecessary surgeries or treatments. Thank you for your post. All good wishes.

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Replies to "@56tburd I had radiation and chemotherapy for SCC base of tongue about 16 years ago. The..."

@hillx001 I'm sorry to hear that it has been so difficult for you. I have suffered many of the same symptoms, but I count myself blessed that I haven't experiences many of the things I've read about here. My searches have found there is little guidance for treatment of Baroreflex failure. There is no cure, only managing for quality of life. It was an emergency room visit that made me aware of the damage hypertension had done. It's been 8 years of trying to find the right combination of drugs to reduce the swings in BP. I now take Labetalol (400mg) in the evening just before bedtime to deal with supine hypertension and Midodrine (5mg) as needed during the day to deal with the hypotension. This has provided some relief. Initially, the BP meds were causing syncope, falls and fainting. I monitor my BP as needed, usually indicated by symptoms. I still experience crisis level hypertension, but Clonidine (0.1mg) brings it down quickly. Only a few times have I needed to increase the dose. Oddly enough, I experience an increase in hypertension events about the 3rd week of the month. I also found that traveling can trigger in increase. I just keep reminding myself that I'm still here and have gotten to enjoy living next door to my four grandchildren. I wish you well.

@hillx001 Wow, I'm so sorry you have to deal with all of that. I never heard of Baroreflex Failure either, and I don't think my father's doctors ever mentioned it to him, but now I wonder if he had it. His ENT sent him to a gastroenterologist, who sent him for further testing, and the gastro told my dad that he had a few tiny ulcers. That doctor thought that was what was causing my father's pain. My father didn't think it was correct, though. He tried some medications for it, and it didn't help at all.