A mother's denial

Post Reply New Topic

About my having seizures.

About my ADHD.

She probably thinks I'm making up the low blood sugar problems too.

Why is it that I feel I have to kick and scream for her to take me seriously?

My doctor doesn't believe me either.

Not only do I feel alone but I have serious health issues that are not being taken seriously.

Your doctor knows that you're kind of hypersensible?

If you mean hypersensitive? No, he doesn't. Both of them are clueless. No matter how many times I mention it.

Oops. Yes, I mean hypersensitivity.

The low blood sugar can be quantified more easily than the other things. Blood glucose monitors, at least in the U.S., can be very cheap because the companies make their money from the test strips. So it would be possible to demonstrate that (or, conversely, disprove that). If you are indeed having low blood sugars, that will affect your ADHD as well. So if you can show your mother low blood sugar readings, or quick fluctuations in blood sugar readings (below 60 would be low, for instance. 70-120 could be considered normal ranges within a given day- but if you drop suddenly from 120 down to 70 within a matter of minutes, it could cause the same dizziness and disorientation as dropping into the 50s slowly.)

ADHD and Aperger's are much harder to quantify, but maybe if you can show that you are right about low blood sugars, your mother and doctor will take your other difficulties more seriously.

Hmmm. It's not often that I can apply my experiences as a diabetic (Type 1=Insulin dependent) and Aspie (with ADHD-inattentive type executive function problem) in the same forum topic.

Edit: Also, extremely low blood sugars can cause seizures as well. So if you do your own blood glucose testing and show to your doctor that you are having low results, it would be malpractice if s/he failed to address. But if your low blood sugars and seizure activity are related you might be unable to test during those times when you are low. Do you have any friends who would help you with this?

Edit #2: Noticed that you are in Australia, so I believe the numbers would be entirely different concerning sugar ranges because y'all use a different measuring system in glucose monitors, but my point was that both absolute readings and quick changes in blood glucose should be noted. Also, I don't know how available glucose monitors are in retail markets there, so maybe a diabetic friend could help measure you when you are feeling low since the doctor doesn't seem to be doing what s/he should.

I have seizures when not experiencing low blood sugar. I have them almost everyday, especially when stressed, exposed to bright/ flashing lights, even when I drink tea. But I can have them when I haven't eaten in 1-2 hours and have low blood sugar too.

My doctor at least gave me a blood test. That's his answer for everything and I blacked out from his request to not eat 3 hrs before the procedure. I'll get my results tomorrow. What if it shows nothing? What does that mean for my weakness and dizziness when I don't eat after 1-2 hours?

Yeah low blood sugar makes ADHD worse. I can't think, can't balance or even see properly.

My mum doesn't think my ADHD issues are that bad. I'm diagnosed and was medicated. I got the seizures from the medication as well as appetite suppression which may have contributed to the low blood sugar, although I sort of had problems before I was on it. It wasn't that severe before. I also had mild symptoms of epilepsy. I had no idea before but it makes sense now. I think the medication really aggravated it.
The Doctor even got me to take my medication again to see if my theory was true. Well I can definitely say it is. 1 hour after taking it I have a seizure.
I can either have hallucinations, paralysis, limb jerking but most common is head shaking. And the worst thing is I stay conscious during the whole episode. Oh and I can have all those symptoms in one episode. Hallucinations usually occur before a seizure though and are both visual and auditory.

I hope things improve tomorrow.

what happens during these episodes? Can you elaborate? What occurs in the visions?

I hope that you sort things out with your mum and your doctor, soon. You've mentioned some pretty serious things and you'd think that the person who gave you life would care to listen. I hope that your mum starts to see life through realistic glasses, soon and that you get the medical help that you need. You don't have to elaborate to me, I listen with my heart. Here's a hug. :O)

It means you don't actually have low blood sugar. This isn't a subjective diagnosis like ADHD.

Not necessarily. If there are rapid changes in blood sugar levels, then the test could measure levels which appear normal, yet which dropped rapidly enough to cause significant effects. Only monitoring sugar levels repeatedly over a short period of time could rule out such rapid drops in level.

For example...



Since I have no idea what the Australian system is, I'll use the numbers quoted above. Say your blood sugar was 120 and dropped to 70 within a matter of minutes, then the test would show a "normal" level of 70, yet there would still be a problem.

I assume finding another doctor is not an option? Because, personally, I don't think I'd trust this one. I've had some very bad experiences with doctors who refused to take me seriously. (Including, at the age of ten, screaming in pain while the doctor dug wax out of my ear and mocked me as a "crybaby", then when he was done, putting my hand up to my ear and discovering it was covered in blood - at which point the doctor ignored me, turned to my mother, and said "How was I supposed to know he had hair in his ears?") A doctor who won't listen to you is a doctor who can be unaware of serious issues, or who can even take actions which will harm you.

Sadly, one of the side effects of AS seems to be the inability to be taken seriously by many NTs. I've suffered from this long before I understood what was causing it, or why people wouldn't take me seriously. The only solution I've found is to seek out those who are willing to listen and take us seriously in spite of our differences.

Last edited by theWanderer on 06 Jan 2011, 12:17 pm, edited 1 time in total.

He should not be having rapid changes in blood sugar after a 3 hour fast. Where would it be coming from?

I used to perform serial blood glucose curves for a living.

I don't know what might cause it - but I do know that it is possible to have conditions that are so unusual - or simply, so little understood - that many doctors never consider them. As I mentioned in my edit of the post above (necessary to add the second quote), I had hair growing in my ears earlier than the doctor believed was possible - until my suffering revealed otherwise. I have strange reactions to some medications. And even after visiting a nationally renowned eye specialist, my ocular albinisim, present since birth, was not diagnosed until this past year.

Some of my reading suggests that those of us with AS might be more genetically unusual, and thus prone to develop more odd conditions than the norm. Whether that is true or not, my own experience has taught me to rule out every possibility, even the most unlikely, before assuming my own experience is wrong. I'm not saying I can't be wrong; only that I have been proven right too many times, often to my own cost, because the unlikely or even extremely unlikely was dismissed or overlooked.

Another example: a few years back, I was helping care for a neighbour's sick guinea pig. Now, although I've picked up a bit here and there, medicine, human or veterinary, is not what I know best. Still, since the professors at the veterinary school where she was taking him were still trying to figure out what was wrong, I mentioned my suspicion that the poor little guy had kidney disease. They insisted that was not possible - and put him on the worst possible regimen of treatment for kidney disease. The very day I noticed unmistakable symptoms of severe dehydration, the regular vet finally guessed that it might be kidney disease, ran a test - and that's what it was. So the poor little guy suffered what was literally torture - and I was an unwilling accomplice in that torture - because the specialists couldn't get something that simple right.

I could go on and on, but the point is that I've had almost endless experiences that have taught me the same lesson. Never ignore your own experience, unless it has been completely ruled out. Obviously, there are issues where that is impossible, and you have to do your best. But when there is any possible objective way to find out what is really happening, don't stop until you have pursued it every step of the way. The fact that the doctor, you, and I are all unable to think of a specific reason why this could be happening is not the same thing as saying it cannot be happening. For all any of us know, this could be a condition so rare it has never been identified before.

I'd add another point, in the same vein. Let's assume that enough testing has been done to rule out any possible problematic variation at all in blood sugar levels. I would still not rule out the individual's experience until I had first asked the question, what else might possibly be happening which could mimic the effects of low blood sugar?

Yes, I know I take this issue to extremes. But I have excellent reason for doing so. I've had concerns of mine brushed aside, over and over again, only to turn out right. It seems to be something which happens to many of us with AS. We are unable to express ourselves in ways that others can easily take seriously. I've been told this even by those who have learned to take me seriously.

Sure, I've been wrong, too. I'm sure I will be again. But the consequences of being wrong, and insisting on having that proven to me before I'd abandon my position, have never been as bad as the actual or potential consequences of ignoring me when I was right. And while anyone reading here may not have a responsibility to take any particular action in response to the original poster's concerns, I believe basic human rights do require the following: first, that no one actively devalue the concerns of another without absolute, objective proof, and second, that anyone in certain positions (say, a doctor being paid to care for the individual) is obligated to do everything in their power to consider the expressed concerns of that person.

It is one thing to debate opinions. I have as many as anyone else, and I'm just as fond of mine. But to deny anyone else is experiencing anything specific without absolute proof is a terrible thing. It has happened to me, so I know what it feels like. And, in fact, if we open the door to that (which I am not doing), what would stop me, or the original poster, from denying you have the experience you say you have? I am not saying this, but I am pointing out that one can be denied as easily as the other. Which is exactly why it should never be done without the most solid of proof to back it up.

My doctor wrote a referral to the neurologist.
Wait, I didn't ask if I had to call them or not? Usually I do.
My mum wants no part in this. My doctor told me that was common. I mean she thinks I'm making it all up but once I told my symptoms to my doctor he said is was possible I could have epilepsy.

The bloods tests came back normal. The doctor told me to exercise more.

Oh well, I feel a little bit better. My mum can deny all she wants. I'm happy that I'm finally going to get the help I need and get a good night's sleep.

Tingling in body, burning in stomach up the thought.
Hot feeling in head.
Sore eyes.
Jerking of hands, arms, legs, head.
Sometimes a severe headache.
Sometimes seeing lights.
Usually a red droopy eye.
Seeing things like spiders, snakes, weird scary looking animals or having full fantasy visions.
Hearing a loud voice.
Loosing sense of taste.
Heightened sense of smell.
Feeling sleepy.
Paralysis on right side.
No emotions.
Poor balance afterwards and cognitive impairment.

Used to wake up at 5am feeling paranoid, like things were crawling on me. Just paranoid when I go to bed now.


I also don't just have AS, I have autism. 25 I may be, 6 year old I may act and think. Sometimes 12.

Organising this visit to the neurologist is going to be torture.

I can't even go to a supermarket on my own. Or go some place I've never been to before without having a meltdown.

I struggle to take care of my own health. Athlete's foot, dental problems - it's just all too much!

And my mum's behaviour will just make me regress even more.

Last edited by pensieve on 06 Jan 2011, 4:49 pm, edited 4 times in total.

Indeed. You are 25 years old. Your mum should play very little role in your healthcare decisions at this point.

Anyway it's good to have parents on your side. I just feel alone now.