[Jonathan_R]

I am having an impossible time working with this. My resistance to carbs/insulin changes every month. As you all know, I keep a detailed log. I also got the calorie king book. So I track carbs closely. A couple months ago, my ratio was 1:15, now its 1:25. I am still bottoming out. I am still having grand mall seizures. Subsequently, I am now averaging seizures about once a month.

I generally try and keep what I eat to about 30 carbs, but if I drop delow 250, then I crash and seize. About a month or more ago, I had a grand mall seizure at Barnes and Nobles (BG was 79). I ended up with 6 staples in my head. After that I had a seizure at home with a BG of 44. Last week I was coming home and my BG dropped to 65 and seized.

I have had seizures when BG levels were normal and low. I have also not had a seizure when I had rediculously low BG levels. So there is very little rhime or reason. Just now its about once a month.

I am so sick of this. I am sick of fighting this. My family is scared to leave me alone, cause I might seize. I'm afraid to go anywhere for the same reason.

I only have internet via the library, so it may be a while before I get back to this.

[networkguy]

Endocrinologist. Stat.

[inkvisitor]

Are you taking any kind of anti-convulsant? If not, do you plan to?

[jenb]

Have you spoken with a Neurologist? A blood glucose level of 79 is within "normal" range, and 65 does not seem all that low to me. The 44 is a hypo for sure. Although you are experiencing seizures at the same time as you are having these readings, it is not clear that the events are actually related. You need a thorough work up...seek help sooner than later.

With concern...
Jen

[Tribbles]

Since you had these before you became diabetic what did the neurologist say the problem was, and are you taking any medication for it? Now sounds like a really good time to talk to your neurologist again.

If it is epilepsy then stress can make you more vulnerable and it becomes a vicious circle with you worrying about an attack which cause and attack and so on. Skipping meals also does it but diet doesn't.

[Subby]

I can't comment on the seizures except to mirror what people have said in getting medical help. I do find that lows can create headaches, eye issues and difficutly thinking myself, fluctuation can clearly affect the brain (and it can just be how fast it changes, doesn't have to be a true low, I have found).

So on a really casual basis I could see how unstable BGs could be affecting your brain if susceptible to seizing. But I also agree that the relationship should be questioned as a matter of course, and that the issues should be thorougly checked up and dealt with seperately (ie, not just considered a symptom of diabetes or BG changes).

I couldn't quite understand what you meant by this comment:

I generally try and keep what I eat to about 30 carbs, but if I drop delow 250, then I crash and seize.

The only thing I could think was that you meant 25g of carbs. If you need 30g of carbs, or are going low, this suggests to me that your basal insulin influence is too high. And, without basal insulin right, I:C ratios become nothing more than a guessing game that might work then, won't work now.

Given a correct dose, you should not "need" to eat any carbs to keep your BG up, except perhaps a strategic snack to help with long acting if need be. If you basals are significantly out, this can create the most unpredictable instability of all, I can find.

I know you've done a lot of tinkering and really tried to improve things. Sometimes in a type 1's life it's like an endless battle: you need to just keep trying things (smartly, and with help from others like doctors, books, or other diabetics) until a part of the puzzle is solved. I can only wish you strength in keeping on trying. I would urge you to get "Using insulin" or "Think life a pancreas" and read them thoroughly for new ideas.

Also consider a pump, seeing that MDI has been so problematic for you. I can't speak for how expensive it might be: but if at all reachable it might be something that is an investment that will provide stability and quality of life for you. It sounds that you need to keep trying for stability and if your techniques and approaches have not been working, no matter how logical or rational they may seem, it's time to learn about and try new things.

Do you have an endo or DE helping you out with finding better control? If not, its in your mission to try and find one.

I wish you the best of luck Jonathan, in getting improvement with both the seizures and the control.

[Jonathan_R]

I am on an anti-convulsent. I have not yet seen a nuerologist. I have read up on endocrinology, neurology, neuro-endocrinology, imunology, just to try and make some sense of this.

I find I am starting to have an increase in memory loss. Something I am not accustomed to.

I am aware that 79, while is technically hypo, it should not be anough to cause a seizure. I have had hypos at 33 and not had a seizure. I have had BG at 99 and had seizures.

The only thing I could think was that you meant 25g of carbs. If you need 30g of carbs, or are going low, this suggests to me that your basal insulin influence is too high.

Already looked into that. Nope. That's not the problem. When I said 250, I meant a BG of 250. Not 25g of carbs.

I keep having to change all my formulae around every month. Including my basal. This should not be. There is some other factor going on.

Since you had these before you became diabetic what did the neurologist say the problem was, and are you taking any medication for it?

No neurologist has ever figured out why I have seizures. I have had EEG's, MRI's, blood work, all kinds of stuff done. No explanation. I can't accept that.

Mean-while, my BG levels continue to look like a roller-coaster ride. I just try and avoid it getting to close to 120 for now. I'll settle for 200 or 250 for now. My Primary Care doc thinks I need the pump. I agree.

I have a facebook page, in which I discuss some of this stuff. Jonathan Rocker - Phoenix, AZ | Facebook

I am adding fields to my log, to track even more stuff.

Basically what I have noticed is my bodies responce to Novolog. It's unpredictable. Novolog has a half life of 3-4 hours. It starts working in 15 minutes and peaks in about an hour. With me, I have noticed entirely different things.

[Tribbles]

Originally Posted by Jonathan_R

I am on an anti-convulsent. I have not yet seen a nuerologist. I have read up on endocrinology, neurology, neuro-endocrinology, imunology, just to try and make some sense of this.

If the epilepsy is not being drug controlled check to see if it is a Vasovagal response. A neurologist should recognise it but not all do. You need a cardiologist to diagnose it with a tilt-table test. The symptoms are similar to a bad low except you don't get the shakes, but you usually get loss of consciousness and seizures. The bad news is there is no treatment for it but the good news is you can get off the anticonvulsant which may help how you feel.

[genie86333]

Originally Posted by Jonathan_R

I am aware that 79, while is technically hypo, it should not be anough to cause a seizure.

Actually, 79 is NOT hypo, technically or otherwise. Under 70 is low...69 is technically low but probably not low enough to cause a seizure.

Originally Posted by Jonathan_R

I have had hypos at 33 and not had a seizure. I have had BG at 99 and had seizures.

Then, they're probably not related to your blood sugar. If they were, what kept you from having ones at 33? Also, if you were having the seizures before being diabetic, again, pointing to not being related.

Originally Posted by Jonathan_R

I keep having to change all my formulae around every month. Including my basal. This should not be. There is some other factor going on.

I'm sorry, I'm not familiar with your background - have you been diabetic long? If not, your pancreas may still be working sometimes, which will cause this to happen. Otherwise, yes, I agree.

Originally Posted by Jonathan_R

Mean-while, my BG levels continue to look like a roller-coaster ride. I just try and avoid it getting to close to 120 for now. I'll settle for 200 or 250 for now.

Ok...you say you can have *genuine* lows of 33 & not have a seizure & have seizures when your numbers are higher...you can't accept your doctor not having explanations for you seizures...but you can accept having high blood sugars, even though that doesn't eliminate the seizures?

Can you accept an amputation of your feet or a failing kidney a few years down the road? Oh, wait, you'll have an explanation for that - your high blood sugar - so I guess it's not a problem?

I know it's frustrating when you don't know what's going on with your body, but letting one problem go out of control when it's not even proven that it's causing the other problem (and it seems as if it isn't) isn't smart.

[Subby]

Originally Posted by Jonathan_R

Basically what I have noticed is my bodies responce to Novolog. It's unpredictable. Novolog has a half life of 3-4 hours. It starts working in 15 minutes and peaks in about an hour. With me, I have noticed entirely different things.

I find huge unpredictability at any dose above about 2 units at once, regardless of the rapid acting insulin. Having "naturally" high insulin needs, for many years I dealt with an onset that might be either delayed for 40 minutes, or more like 2 hours, randomly. Whether it was food boluses or correction boluses, working with that variability made stability literally impossible.

Once on the pump I realised that slow released boluses actually worked more like normal boluses for others- they just "worked". I experimented with the instant delivery component of a "dual bolus" (part of it immediate, part of it slow release) and found that above 2 units instant I increasing got an extreme variability in onset. If the instant part is below, I almost always get onset of action within 20 minutes. I believe this point to a localised reaction that is set off by a certain amount of insulin at once, in my body.

When using injections now, if I need more than 2 units I will take separate smaller injections at once, this also bypasses the problem to a large degree.

Beyond the idea of "pooling" holding absorption up a little, which seems common knowledge in diabetes management, a problem to this degree seems rare or not seen or acknowledged, with the number of endos I saw over the years.

Whether this kind of issue has anything to do with some of your problems, I have no idea. Your words reminded me of it. It was a "hidden" problem for me for many years.

[DeusXM]

If you do not have seizures at high BG levels but have them at normal and low levels with no clear correlation between BG level and seizure, I would cautiously suggest that the cause of the seizure is unrelated to your diabetes and is caused by a separate issue.

I would also venture a completely unscientific and possibly dangerous hypothesis that whatever causes your seizures may be inhibited by very high BGs, but this could just be entirely coincidental, perhaps you're not at high enough BGs for enough time for them to coincide with a seizure.

This is not a reason to neglect treating your BGs; it's a reason to find the root cause of the seizures.

[Jonathan_R]

Originally Posted by genie86333

Actually, 79 is NOT hypo, technically or otherwise. Under 70 is low...69 is technically low but probably not low enough to cause a seizure.



Then, they're probably not related to your blood sugar. If they were, what kept you from having ones at 33? Also, if you were having the seizures before being diabetic, again, pointing to not being related.



I'm sorry, I'm not familiar with your background - have you been diabetic long? If not, your pancreas may still be working sometimes, which will cause this to happen. Otherwise, yes, I agree.



Ok...you say you can have *genuine* lows of 33 & not have a seizure & have seizures when your numbers are higher...you can't accept your doctor not having explanations for you seizures...but you can accept having high blood sugars, even though that doesn't eliminate the seizures?

Can you accept an amputation of your feet or a failing kidney a few years down the road? Oh, wait, you'll have an explanation for that - your high blood sugar - so I guess it's not a problem?

I know it's frustrating when you don't know what's going on with your body, but letting one problem go out of control when it's not even proven that it's causing the other problem (and it seems as if it isn't) isn't smart.

You want to argue over some numbers with out providing any proof, that's fine. If I went by those figures, I'd be dead.

I agree that the seizures may not be directly related to the diabetes. I never said they were. After all, if they were, how can seizures start when I'm 12 and diabetes start when I'm about 35? Hmm?


Instead of amputation and blindness and so on, at this point, if I don't get this under control it's death. I'll choose amputation over death at this point. All though, sometimes I wonder. It was my former endo that didn't want me below 200. In fact, no doctor like me below 200 because of my complications.

And please, don't ever take that tone/attitude with me. I don't take that from my family, doctor, or anyone.

Frustrating? That's not the word for it. You don't know what I have gone through.

I developed a log, that some have downloaded from me. Here is what I track:

Date
Time
Blood Sugar Levels
Food consumed
Liquid consumed
Calories (estimate)
Protein
Fiber
Fat
Net Carbs (which is what I actually go off of)
Total carbs
Mood
Pain/Discomfort
Non-Diabetic Meds
Urinary output
Exercise
Calories burned
Lantus
Humalog
Injection location
Blood sugar difference
Difference in units
Notes


Every time I do a finger stick, I track this. I'm also looking to track calories and carbs burned during exercise, pulse and blood pressure.

[shiftzor]

Originally Posted by Jonathan_R

I am on an anti-convulsent. I have not yet seen a nuerologist. I have read up on endocrinology, neurology, neuro-endocrinology, imunology, just to try and make some sense of this.

To me that statement sounds alarming, you're in danger of self diagnosis and self medication, you may be the brightest person on the planet but reading a book doesn't make you a professional experienced medical practitioner. Please seek help as already suggested.

It seems like your having a rough time of it and I sympathise. How is the basal testing going? You really need to begin to understand and get a handle on your insulin sensitivity. Ensuring that your basal is stable will help you work on bolus dosing. Often in difficult situations I have known people eat exactly the same food (same time, carb contents and quantities if possible) several days in a row in an attempt to nail down bolus dosing. Testing 1hour, 2hours, 3hours and 6hours after you consume a meal. This process can be repeated for your all the meals you consume. Maybe there is a pattern which you can't see yet. What other factors are at play? i.e. activity, stress, waking times, food types (e.g. high fat) etc.

Yes its hard but if it changes every month you really need a starting point. Being in control today will help you watch for pattern changes tomorrow.

[Tribbles]

The only way I can see them being related to your diabetes at the levels you describe are if you have something like neuromediated syncope. The cardiovascular system reacts inappropriately to triggers and instead of constricting the blood vessels relaxes them leading to a huge drop in blood pressure and lack of blood to the brain - cue seizure. In this case the trigger is the anxiety of an approaching low rather than the low itself (hence no trigger for a high) and why you seize at such a high level because 79 is far to high for a glucose seizure.

You really need to see a good neurologist or cardiologist and not a bulletin board. You are not going to fix this yourself. Seriously.

[Jonathan_R]

Originally Posted by shiftzor

To me that statement sounds alarming, you're in danger of self diagnosis and self medication, you may be the brightest person on the planet but reading a book doesn't make you a professional experienced medical practitioner. Please seek help as already suggested.

It seems like your having a rough time of it and I sympathise. How is the basal testing going? You really need to begin to understand and get a handle on your insulin sensitivity. Ensuring that your basal is stable will help you work on bolus dosing. Often in difficult situations I have known people eat exactly the same food (same time, carb contents and quantities if possible) several days in a row in an attempt to nail down bolus dosing. Testing 1hour, 2hours, 3hours and 6hours after you consume a meal. This process can be repeated for your all the meals you consume. Maybe there is a pattern which you can't see yet. What other factors are at play? i.e. activity, stress, waking times, food types (e.g. high fat) etc.

Yes its hard but if it changes every month you really need a starting point. Being in control today will help you watch for pattern changes tomorrow.

What? Reading to become informed is bad now? I can not self diagnose or self medicate. Even if I had an M.D. They have laws against these things. But see the problem is, I haven't been able to find a decent specialist, or doctor yet. By reading, then I become informed and can ask questions about things I wouldn't have before.

Please everyone, CALM DOWN!!!!

I don't expect anyone here to diagnose. Even if a diagnoses was done, I would trust it as far as I can throw it. I have seen my primary care doctor. I have an appointment for neuro and endo. So chill.

My insulin sensitivity seems to keep changing.

I know I am not going to fix this myself. Haven't any of you vented before? I feel that this is impossible. Hence the title of the thread. See, I've had asthma all my life, now I have diabetes, degenerative disk disease, and seizures.

Funny y'all keep saying 79 is far to high to be a glucose seizure, when the paramedics, my meter, and the doctors and nurses say that's what it is. I'll be sure to advise them that their wrong.

I also find it funny that you get on to me for posting such a topic cause you construe it for diagnostic help but then argue with professional medical opinion. You remind me that your not qualified to make diagnoses or to help in such matters, but then argue with several doctors over the past months. I could see one being wrong, but several?

I do think the cardiovascular system has a part in this. Which is why I want to check my blood pressure. It is not anxiety though. Blood draining from the brain, probable. Anxiety, no.