Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Sensory Problems - Difficulty Recieving Senses

Question:

Dear Kathy M.,

I have been suffering for 13 years with a problem that no one I've talked to has ever heard about, nor can they help me to overcome it. I am constantly hungry -- I have the feeling of hunger all the time, even after I have eaten. I have not felt the "full" sensation in 13 years. The gnawing feeling is so irritating! It appears that my brain is not receiving senses from my stomach. Another point -- it seems that everything is reversed. For example, when most people drink water they get full but, I get extremely hungry! Do you have a solution?

Thanks,
Lora


Kathy's Response:

Dear Lora,

This must be very uncomfortable! I have never experienced this kind of thing, and can only imagine that it must be at least as annoying as constant ringing in one's ears, or feeling like someone's constantly tapping on your shoulder or something. It's probably worse than that!

Based on my experience networking with others with brain injury though, I do not think that what you describe is not as common as other things that usually follow a brain injury, for example, short-term memory problems. I do know that it happens, though. A number of people I have met over the years, report gaining a lot of weight after their brain injury for this very reason, though it may not be as extreme. Other reasons, of course, include forgetting that you've eaten something, but this is different.

Sensation processing after a brain injury
An injured brain can end up processing a lot of our perceived sensations differently than it did before the injury. I learned this when I was first injured and had the annoying taste of hamburger in my mouth all the time -- no matter what I was eating, also when I wasn't eating anything. Now, I happen to like hamburgers, but not when I'm eating bacon and eggs, or ice cream!

Some people report feeling too hot or too cold when others don't have these sensations, and it appears that all kinds of messages between the body and the brain can get misdirected after a brain injury. I cannot give you a good solution to your particular problem because I don't know of any. I simply "coped" with the hamburger sensation (accepted it, basically), and was fortunate that it went away after about six months (coincidentally, this was about the same time my ability to focus my eyes came back and I regained some of the hearing I had lost).

We all know that the way our brains process light, motion and sound can be dramatically different after a brain injury. Normal background conversation in a room can sound/feel like a train is passing by. "Normally" lit rooms, very often with fluorescent light, can make many of us feel so agitated we want to flee. And, something as "routine" as sitting at a desk in an open area, where co-workers walk back and forth, might feel simply awful! This is called either visual or auditory overload, and is fairly common. It seems like what you are experiencing might be related somehow. Not that this helps all that much, I know.

With noise and light and motion, there are ways to compensate and adjust one's environment. I confess that I am at a loss how a person could adjust "the environment of one's stomach," however. Maybe ideas that work for other things will trigger some things you could try.

For lighting "overload," some people use visors and sunglasses. In my situation, since I wear prescription glasses, I order them with both a brown tint and photogray lenses, which helps with light. I use only incandescent lighting in my office and often ask that fluorescent lights be turned off when I am in other people's offices. For auditory overload, I keep ear plugs with me at all times, and when I travel, I take ear protectors, as well (sleep with them on if I must). For motion problems, I try to move to a place where I face a wall or a window, instead of a place where people walk back and forth. By the way, blinds and overhead fans bother some people (motion or contrast), and opening the blinds or putting curtains over them, or turning off the fan, has been known to help.

Reaching out to peers
This is the kind of situation where reaching out to a relatively large group of your peers might come in handy. If you go to a local support group, this might be a good place to start. But, if the problem is as rare as I suspect it is, you may need a larger pool to draw upon. This is where e-mail support and discussion lists on the Internet come in handy. This site has a list of Internet e-mail support lists at the following URL: http://www.tbimo.org/groups.htm#internet

I facilitate several of these lists, and some of them have as many as 100 people on them! If you join and post a message about what you are experiencing, chances are that someone on the list has experienced it too. Or, someone has experienced something similar enough that it gives you ideas for things to try. Some of the lists have as many as 200 or 500 people on them, so this expands the "pool" even further!

Biofeedback and neurofeedback
I do not have direct experience with either of these. But. . . a number of people with brain injury have reported remarkable improvement in things like agitation, depression, anger management, and a host of other things, from these treatments. Again, check with others who have had good results, and see if it sounds like something worth pursuing. There might be a way where you can control your physical response to the sensation of hunger with these therapies. I'd be curious to know, if you either find out directly or from others!

You can find out more about biofeedback and neurofeedback on the Internet too. For example, the Society for the Study of Neuronal Regulation has a website containing articles on the subject. The URL is: http://www.ssnr.com. The articles are kind of technical, but it might be worth looking into. I am sure there are other Internet resources too. You can find them by doing what is called a keyword search on one of the search engines.

Another resource might be to search the national association's website (Brain Injury Association, Inc.). Their URL is: http://www.biausa.org

I just did a search on both "neurofeedback" and "biofeedback" and didn't find anything this time. But they update the site all the time, so it wouldn't hurt to keep trying. Or you could send them an e-mail message to see if one of the researchers can find some sites. They have good links too, and scanning the list of links generate some resources.

The benefits of networking

Even when answers seem out of reach, or you have struggled with something for many years, these are new times! By networking with each other, those of us with brain injury, and those of us who serve persons with brain injury, are learning new things all the time -- primarily by sharing experiences and networking with each other.

Two or three years from now, we will all be amazed at the wealth of information available. I am a firm believer that networking is the way to go for many of us. I have been doing it for a while now, which is why I can often tell when something is "common" or more "rare." That said, I have confidence that someone "out there" probably has experienced what you have Lora, and I wouldn't give up hope that something has been discovered or invented (or will be) that will help!

 Kathy M.

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