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Dizzy much? Light headed? read on..

SuzJ
Posts: 307
Joined: Mar 2017

Apparently I have a little discussed, only recently found side effect of radiation.

 

Its called Baroreceptor Dysfunction. You (we) have 2 Baroreptors, with 1 being on our carotids. These can be damaged (same as a thyroid) during radiation.

 

So questions are, how does your blood pressure run? 

Do you get faint on standing, or sitting from lying? (these are called orthostatic changes)

Do you get light headed when you have to reach over your head - believe it or not, that has a name - clotheshanger syndrome..

 

The Nephrology dept, are the go to people for this, I now get to add another med to my growing pile, one to increase my BP, which will be replaced with Ritalin - which, I see as a win/win, because it'll help with chemo brain. (Ritalin's side effects are increased BP)

 

This is just an FYI, for those that can't control BP with drinkling gallons etc. Baroreceptor Dysfunction apparently also causes High BP spikes.

wbcgaruss's picture
wbcgaruss
Posts: 256
Joined: May 2018

Quite how to explain it but I feel like I had definite chemo brain for about 2 years after treatment but it had tapered off and seemed to go away. But I still have this light headedness that things are not perfect. Not really bad but you can tell it's there. I can notice it more when walking and walking on uneven ground and of course, in that case, the neuropathy I have leftover from chemo plays into it also. God Bless

Oh and here is some info from the Mayo Clinic--

Overview

Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

Though chemo brain is a widely used term, it's misleading. It's unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors. Researchers are working to understand the memory changes that people with cancer experience.

Despite the many questions, it's clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment. More study is needed to understand this condition.

 

Symptoms

Signs and symptoms of chemo brain may include the following:

  • Being unusually disorganized
  • Confusion
  • Difficulty concentrating
  • Difficulty finding the right word
  • Difficulty learning new skills
  • Difficulty multitasking
  • Fatigue
  • Feeling of mental fogginess
  • Short attention span
  • Short-term memory problems
  • Taking longer than usual to complete routine tasks
  • Trouble with verbal memory, such as remembering a conversation
  • Trouble with visual memory, such as recalling an image or list of words

When to see a doctor

If you experience troubling memory or thinking problems, make an appointment with your doctor. Keep a journal of your signs and symptoms so that your doctor can better understand how your memory problems are affecting your everyday life.

donfoo's picture
donfoo
Posts: 1741
Joined: Dec 2012

I can check 100% of those items in the list. Everyone mentions chemo-brain in the short term, can there be long term side effect too?

tbret
Posts: 35
Joined: May 2017

I did not know that there was a list out there like that.  I did not know that this was "a thing" and nobody told me there may be a long-term consequence of chemotherapy (and/or radiation, or whatever else may cause it) which would impair my abilities in those areas.

I am *much* less productive, regularly misuse or forget words, always feel like I am in a fog *and* distracted ("squirrel") and am almost incapable of multitasking. 

I was the most organized person I knew.  Now I shuffle things from one hand to the other and back again as though I can't quite decide what to do or almost as if I don't know why I picked it up in the first place.

It isn't all about me, but once again this is another of those things that nobody tells you when you go in for treatment.  It wouldn't change anything - you would have the treatment anyway - and I know they don't want to "suggest" something like this and have you expect it, so perceive it, even if it isn't so.

Yet, I would think someone should mention it.   On the other hand, with the psychic trauma of a cancer diagnosis maybe I was told and didn't hear.  ...or maybe I heard and have forgotten hearing it.

 

 

traceyd1
Posts: 77
Joined: Nov 2012

Good Morning!

My husband underwent radiation for jaw cancer along with 40 hours of surgery in a 7 day period of time.  I am also a speech-language pathologist working with cancer patients on the cognitive side-effects of cancer treatment. I am including a part of a presentation that I present at our cancer pavillion below.  Hopefully, it may help some experiencing these side effects.  I may start a new post as well.

 

Good luck to you all!  You and my husband are my heroes!

 

 

What can you do to manage chemo brain?

 

Day-to-day coping

 

Experts have been studying memory for a long time. There are many things that you can do to help you sharpen your mental abilities and manage chemo brain. Some examples are:

             

•  

Use a detailed daily planner or your smart phone. Keeping everything in one place makes it easier to find the reminders you may need. You might want to keep track of appointments and schedules, “to do” lists, important dates, websites, phone numbers and addresses, meeting notes, and even movies you’d like to see or books you’d like to read.

•  

Exercise your brain. Take a class, do word puzzles, or learn a new language. This may be a little challenging.  My husband found it difficult to concentrate when reading.  Start slowly and don’t get discouraged if you only last a few minutes at time.

•  

Get enough rest and sleep. A friend of ours who is a physician likened radiation to running a marathon every day.  Your energy is completely zapped and you are totally wiped out.

•  

Move your body. Regular physical activity is not only good for your body, but also improves your mood, makes you feel more alert, and decreases tiredness (fatigue). 

Patients generally are encouraged to follow the adage: “What’s good for the heart is good for the brain.” Adequate rest, appropriate diet, stress management and exercise will help maintain or enhance brain health and well-being.

•  

Eat veggies. Studies have shown that eating more vegetables is linked to keeping brain power as people age.

•  

Set up and follow routines. Try to keep the same daily schedule.

•  

Pick a certain place for commonly lost objects and put them there each time.

•  

Don’t try to multi-task. Focus on one thing at a time.

•  

Ask for help when you need it. Friends and loved ones can help with daily tasks to cut down on distractions and help you save mental energy.

•  

Track your memory problems. Keep a diary of when you notice problems and what’s going on at the time. Medicines taken, time of day, and the situation you’re in might help you figure out what affects your memory. Keeping track of when the problems are most noticeable can also help you prepare. You’ll know to avoid planning important conversations or appointments during those times. This record will also be useful when you talk with your doctor about these problems.

•  

If you have to make important calls, write down a list of questions and points before you call.  Especially to insurance companies

•  

Try not to focus on how much these symptoms bother you. Accepting the problem will help you deal with it. As many patients have noted, being able to laugh about things you can’t control can help you cope. And remember, you probably notice your problems much more than others do. Sometimes we all have to laugh about forgetting to take the grocery list with us to the store.

 

Tell others

 

Another thing you can do to better manage chemo brain is tell family, friends, and your cancer care team about it. Let them know what you’re going through. You may feel relieved once you tell people about the problems you sometimes have with your memory or thinking.

 

You’re not stupid or crazy – chemo brain is a side effect you can learn to manage. Even though this isn’t a change that’s easy to see, like hair loss or skin changes, your family and friends might have noticed some things and may even have some helpful suggestions. For instance, your partner might notice that when you’re rushed, you have more trouble finding things.

Tell your friends and family members what they can do to help. Their support and understanding can help you relax and make it easier for you to focus and process information.

 

Talk with your doctor or cancer care team

If brain problems cause trouble at work, talk with your doctor to try and pinpoint what’s causing your brain fog and what can be done about it. This is especially important for people with chemo brain that lasts more than a year and keeps causing trouble in their daily lives.

It helps a lot if you have a diary or log of the situations you have trouble with. It also helps to know some of the things that make the problem worse or better. For instance, are they worse in the morning or evening? Do you have more trouble when you are hungry or tired? Does it help to nap, walk, or have a snack? Your doctor will want to know when the problems started and how they affect your daily life.

•  

Write down questions about the problems you have. Take them to your appointment along with your memory tracking log to talk over with your doctor. Ask what may be causing the problems, and find out if there’s anything the doctor can offer to help you.

•  

Bring a list of all the medicines you take, including herbs, vitamins, supplements, and those you take on an “as needed” basis.

•  

Take a friend or family member with you to help you keep track of what’s said during the visit. They can also describe the changes they see if the doctor wants a different viewpoint of how your brain problems are affecting you.

•  

If your memory and thinking problems keep causing trouble in your daily life, ask your doctor if you might be helped by a specialist such as a neuropsychologist or a speech language pathologist. These professionals can test you and may recommend ways to help you better handle the problems. (You may hear this called cognitive rehabilitation.)

You may need to visit a larger hospital or cancer care center to find experts on testing brain function, including chemo brain. Ask if you can get a referral to one of these specialists who can help you learn the scope of your problem and work with you on ways to manage it. You’ll want to find out what your insurance will cover before you start.

•  

Questions to ask your doctor
These are just some of the questions you may want to ask your doctor about chemo brain.

•                  

Are there other medical problems that could be causing my symptoms?

•                  

Is there treatment for my symptoms?

•                  

What can I do to manage chemo brain?

•                  

Is there anything I can do to help prevent chemo brain?

Should I see a specialist? Can you recommend one?

ERomanO's picture
ERomanO
Posts: 71
Joined: Feb 2019

@ wbcgaruss - I didn't need chemo to experience many of those symptoms.  Some just kind of come along gradually with age, but some I can attribute to dyslexia and the distinct possibility of having ADD (had those tests been around when I was young I think I would've passed with flying colors!), but I can certainly see how chemo can be making things worse.  I've just recently been experiencing a little more fatigue than usual, but Gabapentin might be the culprit.  My nephew, a pharmacist, says that it can be used to treat alcoholism since it provides the same effect as alcohol.  It keeps me in a slight fog throughout the day.  It's not so bad that I can't function, but I can feel it.  I'm taking the Gabapentin to fight a side effect of chemo.  Go figure.

aliaphilo
Posts: 2
Joined: Oct 2015

3 1/2 years ago i was diagnosed with NPC, i had chemo and radiation treatmentS.I also lost a lot of weight (35 lbs), since then i find it difficult to gain back my normal weight,in fact i just lost a few more pounds.Does anyone who had H&N cancer has the same problem?

corleone's picture
corleone
Posts: 296
Joined: Jul 2012

You will need to be more specific to get some useful answers. Can you eat normally, any issues with deglutition? Can you eat "everything", including solid foods? How is your taste? How is your appetite? How is thyroid (TSH, FT3, FT4 levels)? Any other health related issues (not related to NPC or previous treatment)? When did you have your last check up? How active are you, are you (capable of) doing any regular exercises? Etc, etc.

I had issues with gaining my weight back during treatment and a few months thereafter. After that, I have been constantly struggling to keep my weight down.

SuzJ
Posts: 307
Joined: Mar 2017

I lost 120, (YAY! go me!) I am trying not to regain anything.

To regain - add a few calories here and there.. cream in coffee, extra butter, ice cream, stuff like that, it all adds up

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