Vagal Nerve Damage from Radiation

SuzJ

To be honest I thought I was losing my mind.

The head of the radiation Dept just said one day... I think you have a rare unknown side effect. They are running studies, I'll add you!

Talked to a wonderful dr, who has since retired, who knew exactly what was going on!

If you feel faint, drink something that's ice cold, it raises your BP a little, but enough

wbcgaruss

Hello, Hard12Find, I believe this is hard to diagnose.

I am thankful God has blessed me with the information and abilities to share it with everyone.

I am so glad this revitalizes you and gives you hope and a new direction.

Wishing You The Best

Take Care, God Bless

NEGU (Never Ever Give Up)

Russ

wbcgaruss

Hi, all. After this thread came up and discussed the Vagal Nerve, I remembered a post I made a while back from information I came across on another site discussing a similar happening, I think. I don't know if the 2 are related or connected, but I thought I would post the link to the thread, and anyone who wants can check it out. I am always hoping it helps someone.

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

I had radiation and chemo for tongue cancer in 2013-2014. While I am now cancer-free in 2020 I am suffering from Baroreflex Failure, a rare late effect of radiation treatment. Basically, it means that all control of my blood pressure is now gone forever. My systolic readings can range from 65 to 235 for no reason, all within an hour. There is no treatment, but some management can be achieved through medication. I can't find anyone else who has been through what I am experiencing. I am now a ticking time bomb, in fear of my life even while being cancer-free.

Link To Complete Thread…

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

Wishing Everyone The Best

Take Care, God Bless

Russ

DBauer15

https://csn.cancer.org/discussion/comment/1722230#Comment_1722230

Russ , I wish only good things for you and that God intervenes into you life.
I’m suffering the same symptoms, but at a much lesser degree… meds seem to be helping, but now I have negative side effects from those.

wbcgaruss

Hello, DBauer15, and welcome to the CSN H&N discussion forum.

Thanks for the well wishes for God's Blessing and help, and protection. I know he is watching over me.

I would like to send the same blessings back to you.

Also, I want to clarify that I do not have the Vagal Nerve issues or the "Baroreflex Failure" problem.

I had seen them mentioned on another forum and had not seen them mentioned here, so I made a posting to inform the folks here.

To my understanding, it can be very difficult to diagnose and can make dealing with it difficult at times.

I hope you are able to get help for your situation and that it is not too difficult to handle.

Here is another link to look at

BLOOD PRESSURE INSTABILITY FROM RADIATION THERAPY FOR HEAD AND NECK CANCER

https://csn.cancer.org/discussion/327053/blood-pressure-instability-from-radiation-therapy-for-head-and-neck-cancer

DBauer, wishing you good days ahead.

I would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.

Also, our motto on here is NEGU (Never Ever Give Up)

Easy to say but not always easy to do.

Wishing You The Best

Take Care, God Bless

Russ

DBauer15

https://csn.cancer.org/discussion/comment/1723495#Comment_1723495

thank you for the response and new avenues of research…. 🙏🏻

Logan51

Very interesting…A man who never weighed more than 150lbs., high blood pressure was and still is not an issue with me. However, about 3 years ago- with no change in the meds I was taking- my typical 115-120 over +/-80 blood pressure consistently came up in the 95 over 62 range. And now it seems like every time I go to a Drs.' Office they have to take my BP more than once because it's so low- like 88 over 52 of recent. Could this be the cause?

This is why this Forum is essential- sharing what we experience to help others. My thanks to all of the above.

jbgoodjohn

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

In 2003 at age 43 I was diagnosed with stage 3 squamous cell carcinoma cancer of the togue with unknown primary. Removed 1 infected lymph node and received 35 radiation treatments. Several years later I had 2 vocal cord legions removed a couple years apart and since then life has been tolerable. Now I am 65 and have noticed my blood pressure is at times either way up or way down. My recent doctor appt. was last week before seeing this new info. so I couldn't discuss this Vagal nerve possibility. I also see a vascular surgeon yearly for ultrasound or cat scan to keep tabs on my carotid artery blockage. My voice has dramatically become very hoarse and scratchy with an inability to raise my voice or to shout. My current conditions are short dizzy spells, vision distortion from bright sunlight result of low BP, sleep is terrible and unfortunately there is no upside anymore just prevention. I advise seeing a vascular surgeon to monitor your carotid artery yearly. I am 70% blockage on the left & 80% on the right side. Must be 90% blocked before putting in a stent. I did not anticipate these issues but will continue the fight! Good Luck

SuzJ

Keep a bottle of water in the fridge. Drinking ice cold water will increase your BP by 10 mmhg approximately, (also helps after Thanksgiving!)

10 mmhg may not sound much, but it's a relief when your BP drops

wbcgaruss

Very Good jbgoodjohn, thanks for the tips once again on things that can come up and cause issues years after treatment.

Also, the carotid artery ultrasound is important to get done on a regular basis.

I recently had mine done.

Check with your physician how often he thinks you should get it done.

I am sorry you are dealing with short dizzy spells, vision distortion from bright sunlight due to low BP.

I like your spirit though, you are going to stay in the fight and seal with it the best you can, and that's all we can do.

That's our motto here NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

DrMary

As a caregiver, I have to say that this is the most frustrating side effect of H&NC so far. My husband is a jock and can do amazing things, except when his BP is acting up. His doctor, who is also amazing, is more worried about his BP spiking (rare) than when it tanks, which I understand, but am still frustrated. The other day, I practically had to carry him home from a dog walk - he was dizzy and couldn't see. Fortunately, there was a cafe on the way home, and he collapsed there. Dog sat nicely and the folks brought us coffee, while he (husband) curled up in his chair. A few hours later, and he's fine. Now, we drink coffee and do some exercises before we leave the house, and I keep my fingers crossed. I thought the worst side effect was that he couldn't eat something unless it was foobricated. Now this. On the one hand, I think "at least he's alive." On the other hand, I think, "at what point will I not be able to haul his butt home?" I'm strong, but I'm also a 66-year-old lady, with a bad hip.

wbcgaruss

DrMary, what a sudden surprise that he got dizzy, to the point of you needing to almost carry him.

I am glad there was a cafe you found and he could rest and recover.

Hopefully, your new plan of drinking coffee and doing some exercises before we leave the house will be a solution for avoiding future events like the one you experienced.

This is a difficult side effect to deal with for sure.

Wishing You The Best

Take Care, God Bless

Russ

DrMary

Another interesting side effect of the radiation is that he developed Central Sleep Apnea. It's not obstructive, and a CPAP does not help - he just stops breathing. When I poke him, he claims he doesn't feel like he needs to breathe, even though his O2 ring is screaming that his blood ox is below 75%. He feels well-rested in the morning, regardless. I, on the other hand, generally need a nap later in the day to make up for the hours I sit reminding him to breathe (fortunately, it doesn't happen every night, and we have not linked it to any particular activity - it seems to be random).