Late Effects (unstable blood pressure) of Treatment for Head and Neck Cancer

Hi mmqc

I had 30 radio and 4 chemo for HPV16+ tonsil cancer....AF diagnosed 3 months after chemoradio finished...meds for life now...started on Edoxaban...then changed to Apixaban...seemingly Edoxaban is a more expensive drug and my GP's budget is limited....I had to give up motorbiking as my balance is a bit iffy at times.....who knows what the future holds? we just have to take each obstacle as it comes...keep us updated with your progress....forewarned is forearmed.

Peter

Hi are you  having yearly thyroid checks ? My oncologist advised  I needed them yearly so he wrote to GP and now I have a yearly recall. Your TSH and T4 levels need checking as fatigue is a side effect why h can be regulated ith daily medication. Just a thought. 

Hazel x

Hi mmqc 

Hazel and Peter have given you a couple of suggestions to take to your consultant. I might mention that’s who you be seeing not your GP

I will add another. The carotid arteries have receptors ( called baroreceotors) that measure blood pressure so that the body can make adjustments as it moves. 
These can be damaged by RT. It’s worth asking if that has been considered. Whike must cases occur soon after treatment sometimes the effect is years afterwards as fibrosis sets in to the carotid sinus  

So your BP is completely unstable. 

Sorry about the science lesson. 

Hi mmqc

That does sound distressing. I do hope that the doctors can find a cause.

Other things do occur as we get older that might not necessarily be related to our treatment for cancer. Before my treatment I was disposed to low blood pressure especially if I was dehydrated. It has worsened over the years and I have to make sure that I always carry water with me wherever I go and get ahead of it straight away. I have lately started to carry a rehydration drink that I buy from the chemist and that seems to work even better in bringing my blood pressure back up.  I never know when it is going to strike. It makes me feel like I am going to pass out so I know how distressing it can be. As Hazel has suggested do get your thyroid checked as that can be a culprit for extreme fatigue.

Lyn

Thank you for your reply and astute assessment regarding baroreceptors. My Left Vagus Nerve was severed (vocal cord paralysis) at the site of the carotid sheath so I think the baroreceptors are likely involved.  However I think the whole (parasympathetic) autonomic system is compromised. My blood pressure is not only low 70/49 it’s also high ei:150+ so it’s a crapshoot moment to moment. I‘m on Levothyroxine since 2016 as my thyroid gland was destroyed by radiation so I am followed by Endocrinologist. 
I have never seen any h&n cancer survivors with a severed vagus nerve.

 I have body temperature sweating issues, difficulty holding in my pee, gait &  balance issues , visual disturbances near passing out, almost seizures but not showing up on MRI or tests.

autonomic neuropathy seems to be the track i keep hearing about. Noone in the US studies this unless they are out of network medical practices charging huge sums just for testing. As you know US healthcare is another dilemma.

Thank you for all of your replies. I’m am increasingly isolated so I’m nurtured to have my voice and concerns heard. I’m am also very lucky to be alive and I know each of us have faced suffering and have been through the ringer. I never want to compare my trauma with anyone else’s. I’m am mostly searching for anyone who has had the tenth cranial nerve cut so close to the brain. No two of us are alike but perhaps we can learn something from each others experience. Blessings to you all 

mmqc said:

autonomic neuropathy seems to be the track i keep hearing about. Noone in the US studies this unless they are out of network medical practices charging huge sums just for testing. As you know US healthcare is another dilemma.

Whatever it is it seems absolutely awful. I hope you find an answer somewhere. 
Do let us know how it goes if you feel up to it. 

mmqc said:

 I have body temperature sweating issues, difficulty holding in my pee, gait &  balance issues , visual disturbances near passing out, almost seizures but not showing up on MRI or tests.

Hi mmqc, I have thyroid cancer and would agree with the others mentioning T4 levels and I would add checking T3 levels too. Amongst all the other awful symptoms you are experiencing, all the above can be caused by levels being off, including migraine type aura and BP irregularities. I have experienced all those to some extent, (apart from sweating or almost seizures, although I've had palpitations.)

I get alot of useful information off the american TC site too. You say you're already under an Endocrinologist but the one thing that's most important is to find one who will treat your symptoms, not just being blinkered looking at your numbers. Just because we are in their "normal range" doesn't mean we feel well and won't feel symptoms. As you said, we are all individuals and should be treated as such. This is even more relevant if you have no thyroid or as yours was destroyed. It is absolutely amazing how much the thyroid does for our entire body's functions and mechanisms, I completely took mine for granted until it was gone. Worth ruling it out anyway. 

Hope you get some more answers soon. Best wishes. 

mmqc said:

autonomic neuropathy seems to be the track i keep hearing about. Noone in the US studies this unless they are out of network medical practices charging huge sums just for testing. As you know US healthcare is another dilemma.

Yes all these symptoms coupled with the fact that you have had one vagus nerve sectioned seem to point that way 

Blood pressure changes, Temperature control issues, Digestion problems, Bladder dysfunction,  Inability to sweat properly, Dizziness or fainting, Difficulty eating or swallowing

I have had a search here in past posts and can sadly find nothing.