Vagal Nerve Damage from Radiation

DrMary
DrMary Member Posts: 531 Member
edited January 24 in Head and Neck Cancer #1

Hi folks - it's been a long time. My husband had tonsil cancer over a decade ago and got the full chemo and rad treatment. I was active here for a while, but after a few years, I saw that others could provide any info I could, and it was hard to relive the bad days.

Now, I'm learning about something that might be new to folks who had radiation to their necks - odd symptoms from vagal nerve damage. Our first indication was severe acid reflux, which started immediately and was expected, as a side-effect of chemo. It got better, and then started getting worse. Then, a year or so ago, he started having dizzy spells that seemed to be from his blood pressure dropping. Then, he developed sleep apnea, but not the obstructive type. He just stops breathing and actually says he feels fine, even when the oxygen monitor says he's below 80%. Then, he had a few episodes with angina - bloodwork showed no heart damage and he's very fit. Then, his blood pressure got wonky - sometimes high and sometimes low.

All of this could be attributed to damage to his vagal nerve from the radiation. Anyone else encountering these issues 5-10 years after remission?

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #2

    DrMary welcome and glad to have you.

    You may want to have a look at the posting I just made after seeing it on another forum it sounds very similar to what is going on with your husband in some of the effects he is having.

    "Baroreflex" Failure" A Rare Late Effect Of Radiation Treatment

    Below is the link to the article I just posted on CSN and if you or anyone wants the other forum link contact me for it I may be able to PM it to you but the system does not let me post it here.

    Take Care, God Bless-Russ

    https://csn.cancer.org/discussion/326508/baroreflex-failure-a-rare-late-effect-of-radiation-treatment


    "Baroreflex" Failure" A Rare Late Effect Of Radiation Treatment


  • DrMary
    DrMary Member Posts: 531 Member
    #3
    https://csn.cancer.org/discussion/comment/1705622#Comment_1705622

    Wow - thank you! I have been looking for that exact type of info. My husband's doctors are open minded (they don't treat me like a nut, but my PhD in chemistry might have something to do with that) but they still want to go with standard treatments for old, out of shape folks, even though he has a "good" BMI, eats mostly healthy foods, has no "bad" genes, has literally played hockey against Stanley Cup winners in the last few years, plays "elder hockey" a few times a week, and joins me in my HIIT fitness class that I lead once a week without any problems.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #4

    You are very welcome DrMary I hope it helps lead you, folks, to a solution.

    Wishing You the Best

    Take Care, God Bless-Russ

  • SuzJ
    SuzJ Member Posts: 446 Member
    #5

    Keep ice water on hand, it'll push him up 10mmhg pretty fast.

    I cant remember the specialists thing I saw, but endocrine comes to mind?

    Baroreflex syndrome actually does suck. Avoid the heat, avoid standing too fast, avoid raising hands/arms above your head.

    I drink some water, then turn it on its side in the freezer, so its always cold. otherwise, there are meds, I have Midodrine, I take when I "feel" it, pretty much covered with the above comments - long term is ritalin (now maybe that would help my chemo brain!)

  • Tate1294
    Tate1294 Member Posts: 4 Member
    #6


    https://csn.cancer.org/discussion/326507/vagal-nerve-damage-from-radiation

    so good to find this, my hsb had treatment in 2007 and has this year suffered all these debilitating symptoms and waiting to see specialists has been a nightmare because of course, once you are discharged from oncology, not so easy to get back to people who know what's going on...thank you so much for posting and to other links as well. feel rather let down by cardiologist dismissing his labile BP and not making sure carotid artery evaluation done. now feel empowered to ask and get proper scans, threat of stroke? oh well, somethin's gonna get ya and i remind myself how he was able to see his son married, grandchildren come along and the travelling we have done post CA...thanks to this network, warm thoughts to all who might be perusing...

  • Tate1294
    Tate1294 Member Posts: 4 Member
    #7

    Hi Dr. Mary

    I had tonsillar cancer in 2007.

    Your post nailed my symptoms. While it is not great news that my autonomous system is failing it is a relief to know what is going on. Thank you very much for your post.

    My blood pressure swings wildly and the Cardiologist was not much help as a 24 hour blood pressure monitor shows good average blood pressure. He says that this is the only thing they look at which made no sense to me when my pressure can go as low as 75/41 and as high as 215/125.

    Other symptoms related to the vagal nerve for me are swallowing difficulties. Numbness on the left side of my face and neuropathy irritation behind my left ear and left chest which causes me to scratch for relief. Also very unpleasant has been occasional regurgitation through the nose with no warning. I believe this is also connected to the vagal nerve.

    I take a proton blocker for my stomach acid which seems to work well.

    Has your research led to any additional discoveries that might be helpful?

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #8

    Tate is your problem Vagal Nerve or the other problem mentioned here? "Baroreflex Failure" They may or may not be similar. If you read her second posting I believe she is leaning more toward the "Baroreflex Failure" as her husband's problem.

    https://csn.cancer.org/discussion/326508/baroreflex-failure-a-rare-late-effect-of-radiation-treatment

    Take Care, God Bless-Russ

  • DrMary
    DrMary Member Posts: 531 Member
    #9

    And here's another odd symptom - his heart rate, normally about 60-70 bpm, will randomly spike, often over 150 bpm, but only for a minute at at time. I've only recorded it at night (he wears an O2 ring, which vibrates when his oxygen gets low, to remind him to breathe) and once while he was lying down, after his second angina episode. I had put it on him as soon as he reported the angina to me, and his heart rate was spiking between 120 bpm to above 150 bpm, dropping back down to about 90 bpm, every few minutes. It did this for an hour and then eased off, as did the angina (after 3 doses of nitro - if it hadn't, we would have headed for the ER). His BP was slightly low (it got very low during the episode, but that might have been due to pain). Since they had found nothing in the ER during the first episode, I couldn't convince him to go to the ER then - primary care doctor on Monday (episode was Saturday) wasn't worried ("those monitors are unreliable"). He'd just seen the cardiologist, and they find no problems. During the episode, he said he didn't feel like his pulse was racing. We're waiting on an appointment with the cardiologist again, but it seems like this must relate to vagus nerve damage. . .

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #10

    Well, Mary, that has to be terribly unnerving to deal with and I am so glad after the 3 doses of nitro it finally settled out. I am hoping when you see the cardiologist again he doesn't find any problems. This may be something that is going to crop up now and then and it seems to me you are prepared to deal with it. Your husband has one of the more profound aftereffects of radiation to deal with. So you are apparently leaning toward the vagus nerve as the culprit rather than a baroreflex failure is that correct? Hang in there.

    Wishing You the Best

    Take care, God Bless-Russ

  • DrMary
    DrMary Member Posts: 531 Member
    #11
    https://csn.cancer.org/discussion/comment/1706514#Comment_1706514

    I'm not a doctor (well, PhD in chemistry, but not a "real" doctor) so I might be mixing up terms. In reading the baroreflux failure info, I see that the vagus nerve is a big part of the signaling system that fails, and I know that nerve got a butt-ton of radiation (unfortunately, we were on the trailing edge of conventional treatment for HPV-caused tonsil cancer, which, it turns out, can be treated with less/no chemo and much less radiation). I'm looking at the Vanderbilt University Medical Center as one option, as they seem to treat a lot of R-ABF (radiation-induced afferent baroreflux failure) there.

  • SuzJ
    SuzJ Member Posts: 446 Member
    #12

    The nitro was responsible for the sudden drop in blood pressure. I've seen it many times. Increase in rate is due to pain.

    The baroreceptor dysfunction is not new, they just realized it was happening, and did some studies to prove it.

    I know this will sound.. Strange, but are you sure it was his heart? Could it be the horrible GERD that seems to be popping up?

    I ask because with negative heart tests, 3 nitro was a LOT. Does he have pain down his arm and up to his jaw? Or is it more the pain mid chest? To be honest the first few times I got the pain I thought 'heart' but I had a great heart check up not long ago.

    Now I'm going through all the GERD stuff. Fun! Pantoprazole at night, nexium in the morning, and something else 3x a day. But at least the pain is being kept at bay!

    Hope this might give some insight, cancer, the gift that keeps on giving.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #13

    My goodness, Suz, you are surely going through your time of it too. Many on here are dealing with more than we know. Seems like it's always something. Hope you get the GERD under control, glad the medications are keeping the pain at bay.

    Take care, God Bless-Russ

  • passout
    passout Member Posts: 4 *
    #14
    https://csn.cancer.org/discussion/326507/vagal-nerve-damage-from-radiation


  • passout
    passout Member Posts: 4 *
    #15

    Thanks DrMary.

    I had radiation therapy 10 years ago and have experienced many of the symptoms you described. I have had many tests. My heart doc wants to put me on an expensive to quickly raise my BP but I'm not convinced my fainting is due to hypotension as opposed to HR drop. Not sure where to go from here.

  • DrMary
    DrMary Member Posts: 531 Member
    #16
    https://csn.cancer.org/discussion/comment/1712634#Comment_1712634

    We narrowed the possibilities by having him take his blood pressure every time he had a dizzy spell (as well as other times in the day to establish baseline) - our machine also records pulse. His pulse was always fine, or a little elevated, but BP often was tanked. After the angina scares, I bought a Kardia (6-lead portable ECG) and he tests with that as well. Cardiologist thinks it can all be solved if we get rid of the apnea, but pulmonologist is treating it as obstructive apnea, which has done nothing for his oxygen and keeps him from sleeping. I'm looking at the vagal nerve stimulators (OTC - not implanted) right now. . .

  • SuzJ
    SuzJ Member Posts: 446 Member
    #17

    as we go into warmer (eventually) weather, it'll be worse.

    Ice water on hand ALL the time. talk to endocrinology about midodrine

    If he's home when it happens, lie down.

    Check BP, standing, sitting, and lying, for orthostatic changes (those are more than 10mm mg changes)

    Stand, measure, sit, measure, lie, measure, going the other way, you need to wait 10 mins or so between each

  • passout
    passout Member Posts: 4 *
    #18
    https://csn.cancer.org/discussion/comment/1712637#Comment_1712637

    I have a BP cuff that I'm going to keep with me when I anticipate standing. I used to get dizzy but now I just feel like I'm going to black out. Usually I catch myself and bend over a bit until stable. However, the last time it caught me by surprise. I felt a bit nauseated and the next thing I knew I was on the floor and broke my leg. I have also considered the stimulator. Let us know if it helps.

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