Things to rule out

[Robbymore21]

My wife has had 8 seizures over 18 months presumed to be due to reactive hypoglycimic drops. She has had multiple eeg's mri's ect and found no epileptic i indicators. Today out of the blue she has had 6 seizures. The current endo doc is doing some 72 hour fast test. Her sugar was taken right before some of the seizures tonight and her levels were fine. I dont know what is going on with ber today to have so many all of a sudden but i am looking fir suggestions of things to have them check for. They did a typical blood panel in er today her magnesium was supposedly in range. Unfortunately the facility is not that well educated in things. For instance the endo doc acts like reactive hypo does not exist. And says seizures do t raise blood sugar. If you have had seizures tied to anything i could have them readily look for i would greatly appreciate the advice. We took her to baylor in houston last monday and an epilepsy specialist said he did not think they were epileptic type seizures(before this set) and that medication wouldn't do her any good.

 

[Cint]

Robby,

I have E and Type 1 Diabetes. Once in a while, my glucose level drops down to the 40's and 50's, but that doesn't bring on a seizure for me. And at other times it has been up in the 200's. After my last seizure, the ER dr. tested my glucose level and it was within the "normal" range for me, around 80. I take insulin shots 5 times a day and am checking my glucose thru the day.

What was her last A1c level? Have they checked her for other hormonal problems? Hypothyroid? Estrogen? Is there an neuroendocrinologist to see at Baylor? Sounds like you need a 2nd opinion.

 

[Robbymore21]

Low hormones

Robby,

I have E and Type 1 Diabetes. Once in a while, my glucose level drops down to the 40's and 50's, but that doesn't bring on a seizure for me. And at other times it has been up in the 200's. After my last seizure, the ER dr. tested my glucose level and it was within the "normal" range for me, around 80. I take insulin shots 5 times a day and am checking my glucose thru the day.

What was her last A1c level? Have they checked her for other hormonal problems? Hypothyroid? Estrogen? Is there an neuroendocrinologist to see at Baylor? Sounds like you need a 2nd opinion.

Her thyroid i think has been tested. Her hormone panel indicates really low estrogen and sex hormones. Her sugar is more volitile the week before her period(when she has one). When she has a seizure her sugar jumps. I have caught it right after several times around 135 and up to 187. Which for her norm is high. We keep a detailed log of levels which tends to stay between 70-90 with rare instances up 110

 

[Cint]

We keep a detailed log of levels which tends to stay between 70-90 with rare instances up 110

Wow!! Rare instances of 110?! That's within the "normal" range for me. Up to 120 is normal for me. My endo doesn't want mine over 120. This morning my glucose was down to 68. But that hypoglycemia has never brought on a seizure.

Years ago, tho, when I first started having CP's, the dr. initially said I was suffering from hypoglycemia. A month later, I suffered my first TC seizure and was in the hospital for two months because of the accident I was in. It was after the accident that they did all the testing for seizures and was finally diagnosed with E.

 

[Robbymore21]

She has had all the eeg's, mri's, and cat scans. They all come back neg, no tumor, no epileptic activity. She had a 3 day eeg with no activity. Epilepsy specialist seemed confident it wasn't epileptic activity. Trying to check other missed stuff like magnesium or bad protiens or any other odity that might induce.

 

[DayDreamer]

I have a cousin who has occasional systemic triggers for seizures: hypoglycemia or low mineral levels due to another chronic condition. The links below covers causes of hypoglycemic without diabetes as you would definitely be aware of diabetes before hypoglycemia. Hypoglycemia would then be a side effect of insulin.

Hopefully it is something controllable in her diet.

http://www.mayoclinic.com/health/hypoglycemia/DS00198/DSECTION=causes
http://www.reactivehypoglycemia.info/articles/hypoglycemia-without-diabetes-causes-and-treatment/

 

[Robbymore21]

I found a doctor who specializes in why i think to be relevant for my wife. I am curious if anyone on here has any experience with him. His name is dr alan jacobs located in new york. But from what i understand he does phone consultations as well.

 

[Idahoseashell]

I've been reading a lot about magnesium deficiency lately and have realized that magnesium deficiency is very difficult to test accurately because your body will steal magnesium from your bones, and organs to maintain a normal level in the blood for as long as possible. So even if your blood has enough magnesium your bones and organs including the brain may be slowly starving for magnesium. It does this to keep a balance between the magnesium and calcium so your heart will keep beating regularly. Calcium causes muscle contractions and magnesium causes muscles to relax. You need both to prevent heart failure. If your blood shows a magnesium deficiency your are already extremely deficient and at serious risk of a heart failure. I recommend reading everything you can about magnesium deficiency. It is now believed that most people (70-80%) of Americans are deficient in magnesium and many of the worst diseases and health problems are aggravated by or even caused by magnesium deficiency.

 

[Endless]

Other Causes

Robbie,

What are her seizures like? What are her symptoms?

I'm one of the examples of seizures that have a physical cause, but are most likely not epileptic. I have partial seizures, both simple and complex. I still think the complex partials might still be epilepsy, but I digress.

Horrible headaches came along with my seizures. I thought they were post-ictal headaches. My epi sent me to a neurologist who is a headache specialist. That neuro did a lumbar puncture and found out the cerebral spinal fluid pressure in my head and spine is way too high. Turns out I have a rare disease - Idiopathic Intracranial Hypertension.

What really surprised me is that based on the input from another forum's members, about 25% of the people with IH seem to have seizures, too. Either simple and complex partials, or absence(generalized) seizures. That's significantly higher than the 1% in the general population. We figure it must be the high pressure pressing in on the brain.

I guess the point of what I'm sharing is that it depends on your wife's symptoms what illnesses your doctors pursue or rule out.

Just speaking for myself... Since hormonal imbalance can cause both IH and seizures I had a hormone blood panel (fine), and because I've been exhausted and have heart arrhythmias my heart has been tested (so far so good, but we aren't done). IH itself can also cause heart arrhythmia, as can metabolic acidosis, a side effect of my meds. Sleep disorders were also pursued because they can mimic or cause my problems (yep - apnea, now on a cpap).

Unfortunately the cpap machine alone has not solved the IH or seizures. I'm hoping we'll eventually find all the answers. In the meantime I'm off seizure medication, for better or worse. I'm hoping if we get the IH under control seizures will disappear.

Keep digging! Pay attention to other symptoms you don't think are epilepsy related and see if anything might fit.

 

[Robbymore21]

Right now we are backing off her welbutrin. Apparently it stacks badly with sugar issues, hormone issues, and seizures. I think my wife wont need a replacement for the welbutrin either. Who knows take her off that and everything may clear up. Fingers crossed that that is the case.

 

[Robbymore21]

Ok a by friday she will be off the welbutrin. So far anxiety seems to be well within reason. We also started a low dose magnesium supplement. She has now made it a month without a seizure. Hers tend to be a month or more apart so i dont know if we are clear or not. We are really concidering talking to an Alan Jacobs but we have had a hard time finding reliable reviews and such. He is a specialist in neuroendocrinology in new york who does phone concults. He is board certified but like i said little to no reviews. His wife has astounding reviews. He also does not take any insurance which kinda makes me concerned. I really wish i could find somebody with first hand experience or close to it with this doctor. This is his web site which of course makes him seem all good.

neuroendocrinology.org/index.html

 

[Boozer]

I have type 2 diabetes and the docs are saying I am having seizures. I have had them when my sugars are low around the 50's and have also read that low blood glucose can cause seizures. Just thought you may want to know. Erin