Hunger Issues--underweight

by Tay

I started my journey at age 20 towards finding out what is "wrong" with me. So far I've seen psychs and so on for issues that seem very much akin with the hypersensitivities associated with SPD. Most of the doctors and psychs act as though I'm making it up or just stare at me. I've undergone EEGs and repeated interviews. Nothing has come up. I'm now going to be making that trek to the doctor YET AGAIN with another symptoms checklist (that of SPD) to see if perhaps someone can evaluate me for this.

That said, my question is pretty simple: I've been underweight my whole life. I rarely feel hungry. When I do, it is usually after a snack. I won't eat for days on end simply because it does not occur to me that I am hungry and, when asked if I've eaten, I'll respond with something akin to "I must have. I feel full."

Is this a possible symptom of SPD? Or should I be looking elsewhere for information on this? If this is the case, how do I learn how to eat when not hungry, as eating when I am not hungry makes me feel ill?

The SPD Help Line Answers

In isolation this could be an issue not related to SPD, but more “medically” related… what it would be specifically, I wouldn’t know. But, if you feel you have other signs of SPD, this certainly can be one of the symptoms. The interoceptive sense is what you are talking about. It deals with the more “autonomic nervous system” issues and that of internal organ receptors… hunger, thirst, digestion, sleep/wake cycles, temperature, blood pressure, heart rate, etc. Do you have issues with any other internal receptors, those of the interoceptive sense as mentioned above? If so, this may indeed be related to the sensory receptors within these organs.

I am curious to know which symptoms on the SPD Checklist (regular or adult checklist) you are experiencing. If you can let me know, perhaps I can direct you further or give you an initial opinion about whether this may be related to SPD or something else. Can you respond in the comments box below with some other specific symptoms from the checklist?

Also, if you are investigating SPD as a possible diagnosis, make sure you get yourself to an Occupational Therapist for an evaluation. They will be the ones who do the assessment and diagnosis. To find one, please read How To Find An Occupational Therapist For SPD and make sure to click on the link for the SIPT Certified OT database in that article. You can find your state and find OT’s experienced in sensory integrative theories, assessment and treatment. Let me know if you do/don’t find one near you.

You may be on to something here. And, as far as eating when you are not hungry… IF it is SPD, your hunger signals and appetite should improve with therapy. But, I do have to be honest, the interceptive sense tends to be the most challenging to change… so it will take some time for sure! Meanwhile, you may also want to go see a nutritionist for some tips and tricks regarding how to best handle this. Possibly even an endocrinologist too.

I hope this helps some.

Looking forward to your response.

Take good care.
Michele Mitchell

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Mar 09, 2008
What do I do now?
by: Tay

There are OTs in St. Catharines. Just none that are listed as sensory trained. The closest on that list is neurological. Anywhere else that would be likely to have an OT who deals with sensory issues is a half hour or more away, and I lack a car or any other method of transportation, and have very little/no money as I lost my last job due to being unable to deal with a bunch of issues at the time. I depend on the public transit in this city, which is not good, to put it mildly. My family is over 4 hours away (I'm at college), and don't believe I need any sort of help as I "did fine in school."

Yeah, right. If "doing fine" is having no friends, being the school punching bag, crying my eyes out every day, throwing temper tantrums, constantly fighting with my family, sitting and rocking myself for hours because the world was too "big," as I put it and hiding in my room from others for years, then I did great.

I can remember just about bursting into tears as a child because my mum tried to make me go outside and "get some sun" and she looked at me like I was nuts when I responded "But mum, when the sun touches me, it HURTS," and my mother STILL insists that I'm "totally normal" and just looking for attention. Help from my family on this one is non-existent, and my ex-partner (who says she's done with me) was in the States anyway.

I'm supposed to be having a full evaluation with a psychologist soon (my university thinks I'm insane because of the things I went to the student disability services asking for help with on my schoolwork). Is there anything that I could say to this psychologist that might help in some way?

Michele Mitchell comments...

I would ask the neurologist if they diagnose or treat SPD... some do! Start there since it is close. Also, as for the psychologist? Bring the SPD checklist all filled out! I hope that would help them understand what is going on. Lastly, I would work with some kind of community resources to get help getting a ride to at least get the SPD evaluation!! There should be something available... some kind of ride for a medical appointment... or a volunteer group or person who may be willing to take you?? Talk to any community resources you can find and find a way to get there for the evaluation! Talk to the psychologist about getting a case worker or community resources. Go through her to see what she can help you with, ok? She should have some ideas... be specific and be open minded about getting the help in whatever way you can, ok?

Anyone have any other suggestions??

Mar 03, 2008
by: Anonymous

No OTs in my area (St. Catharines, Ontario) are listed as dealing with Sensory Integration.

Michele Mitchell responds...
You are obviously dealing with some sensory processing issues!! That's my humble opinion anyway. How far away is the closest OT? To at least get the evaluation?? There were so many listed in Ontario... how far could you travel for the eval? To get the process started?

Mar 03, 2008
Part three (yes, I'm verbose)
by: Tay

Her other dirty trick was to try and make me "get over" my inability to eat different foods that were "touching" by putting creamed corn all over everything. The "touch" of creamed corn ALWAYS made me gag and I'd sit there, appalled, scraping it off my food so I could eat without starving. When I did this, she used to say only animals ate like that and threaten to put me down on the floor with the dogs.

I suspect I may have to split this in two for the character limit as is, but hopefully this gives you a better idea of what I'm dealing with.

Mar 03, 2008
Part two
by: Tay

Under proprioceptive, many of my actions fall under difficulty "grading movement." As an example, I tend to "bite" the people I am closest to as a sign of affection--my partner, my little sister--but if I am not paying EXTREMELY close attention, I tend to injure them.

By the time we read the first 1/3 of the list, my partner was saying "It looks like someone followed you and wrote this list..." What was the clincher, however, was the internal regulation issues.

With the exception of difficulty with potty training (I potty trained at age 22 months and distinctly remember it, as the feeling of a dirty/wet diaper was the most disgusting thing I have ever felt, even to this day), I experience all of these. I have a seeming medically unexplainable but documented tendency towards hypothermia. I was a competitive athlete (nordic skiing, I sucked for coordination issues) for several years in an extensive training regimen. During that time, I had to regularly record my pulse and breathing rates at rest and at work. My pulse rate and breathing rates either had a dangerously large jump between the two or they didn't change. Never once did I get the anticipated heart rate range for both resting and working, to the surprise of my coach. Difficulties regulating emotion and activity levels have basically cost me my relationship with my partner at this point.

The one that really got me in this category was this:

#unable to regulate appetite; has little to no appetite and/or will be "starving" one minute then full two bites later, then back to hungry again (prone to eating disorders and/or failure to thrive)

I'll go to a restaurant STARVING and sit down to eat. I'll order my appetizer and my main course. I'll eat two, three bites of my appetizer and then can't eat anymore, so I have it put in a doggy bag. I'll go home and, halfway home, discover that I am starving and gobble down half of my meal in about 3 minutes, then feel terrifically ill from having overeaten, then ten minutes later be ravenous again, until I've worked my way through a whole meal.

Conversely, sometimes I'll not eat for awhile (a day or more) because I simply do not notice any feeling of hunger. Someone will point out that I should eat, as they haven't seen me eat in awhile. I'll sit down and have a small snack, feeling sick from not being hungry with every bite. Half an hour to an hour later, I'll feel hungry, make myself food, but then be unable to eat more than a bite or two without feeling nauseous.

It's been that way my whole life. I spent more time stuck at the dinner table than any of my 5 younger siblings ever did, my mother saying "If you don't eat all your supper, there will be no snacks later on" until I was in tears and she finally let me go. I basically managed to survive by drinking milk, as she never denied us milk, no matter whether we'd eaten our meals or not.

Mar 03, 2008
3000 characters max... which do I choose?
by: Tay

Well, looking at the regular list:

Tactile defensiveness:


#resists friendly or affectionate touch from anyone besides parents or siblings (and sometimes them too!)

#dislikes kisses, will "wipe off" place where kissed

(I do like kisses from my partner--but ONLY my partner)

#distressed by clothes rubbing on skin; may want to wear shorts and short sleeves year round, toddlers may prefer to be naked and pull diapers and clothes off constantly

Interestingly, I also experience a couple of tactile hyposensitivities:

#may be self-abusive; pinching, biting, or banging his own head

#mouths objects excessively

#has a preference and craving for excessively spicy, sweet, sour, or salty foods

The latter two fall under oral hyposensitivity, though, so perhaps separate categories?

As far as tactile discrimination goes, well, I appear sloppily ambidextrous and have trouble getting dressed because fastening clothes has always been a challenge. Tying my shoes takes 10 minutes. Writing a cheque (the only handwriting I do) takes 5 to 10 minutes.

Each of the others, I appear to have most of the hypersensitivity issues, occasionally a few of the hyposensitivity issues appearing. The auditory section is confounded by a diagnosed hearing impairment--degradation of some kind, I was told probably caused by having my music too loud, which is odd because as a child, before my hearing began to go, I couldn't tolerate music or television on loudly enough that anyone else in my family could hear it. We used to have battles for my family to get me to let them turn up the television.

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