How many of you experience at least 3 of these symptoms?

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KarenB

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1) Extreme sensitivity to cold -- for instance, a seizure might be triggered by swimming in cold water or being in a cold wind or getting too cold at night or even drinking cold water.

2) Shuddering (unrelated to being too cold or having the flu, but the same type of shuddering) -- especially upon awakening. Not a mycolonic type of manifestation, just the sort of shuddering we all get when we have the chills.

3) Pupils frequently dilated

4) Extreme thirst -- always wanting a drink -- drinking more than 2 cups of liquid per hour (1 cup for a child)

5) Extreme urination -- more than once an hour in daytime; having to get up to go more than once at night (unless you drank a whole lot right before bed -- ha ha!). For a child -- daytime incontinence or bedwetting after potty training achieved.

6) Extreme hunger, and lack of feeling full (not related to certain seizure meds)

7) Problems with blood sugar regulation (high or low)

8} Photosensitivity that triggers a seizure (examples might be seeing sunlight reflected off water, being close to TV screen, very bright lights -- like in a department store or the mall, computer screen, computer games, flickering lights -- like on Christmas tree)

9) Disruptions in certain sleep cycles -- for instance, consistently waking up around 3 a.m. -- or consistently having a seizure at a certain time of the night

10) Anti-epileptic meds metabolized too fast or inefficiently -- for instance, you might be on a very high dose, but your blood tests show less than therapeutic levels

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If you have epilepsy and have 3 (or more) of these symptoms, and could also share what type of seizures you have (i.e. tonic clonic, myoclonic, gelastic, etc.), what kind of epilepsy you have (i.e. temporal lobe, etc.), and if you know the cause of your epilepsy (i.e. brain injury or lesion) that would be helpful.
 
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The extreme thirst, hunger, frequent urination and blood sugar fluctuations all sound like diabetes, which I also suffer from in addition to epilepsy. Have the docs done an A1c test on your son? Or had his thyroid checked? The extreme sensitivity to the cold could be from hypothyroid, which I also suffer from. I have idoipathic temporal lobe epilepsy and some of the meds are known to exacerbate the thyroid problem, or E itself could.

I take two AED's, a thyroid med, and have to do insulin shots 5-6 times a day. I see an epiletologist and an endocrinologist for my problems.
 
I have pupils frequently dilated, or at least before a seizure, I also get thirsty, urge to urinate, and vomit simultaneously before a tonic-clonic seizure. I also get emotionally explosive, or have a killer headache, in the 24-48 hours leading up to one. Sometimes, I have an aura. I had anoxia at birth.
 
Yes, Cint, he was recently diagnosed with low thyroid levels, and is on meds for that now. His neurologist is also scheduling an MRI for a hypothalamic hamartoma (due to precocious puberty and gelastic seiuzures, in addition to the tonics and tonic/clonics). But in researching that, it occurred to me that there may be a strong relationship between metabolic issues and some forms of intractible epilepsy.

BTW, Cint and Cazzy -- did your seizures begin in childhood?

As far as diabetis, we check Jon's blood sugar regularly because he's on the Ketogenic diet. However, a year ago, when he was seizure free, his blood sugar levels were always low, and now that he's having daily seizures they're almost always high, even though he consumes almost no carbohydrates. When I say "low" and "high" I mean low as in 60's or 70's (normal for Keto diet) and high is anything above 85, which would be "normal" for someone not on the Ketogenic diet, but doesn't make sense for him.
 
The shuddering, disruption of sleep cycles and swings in blood sugar.. also I have really low blood pressure, and it will dip really low during an aura. I have been wondering if I could have diabetes in addition to epilepsy. I have complex partials, in the front left temporal lobe. Viral encephalitis, from LaCrosse Virus is how got epilepsy.
 
I shudder sometimes, have to pee a lot- especially at night, wake up a lot (usually when I look at a clock it's between two and three a.m.), and have had blood sugar swings... after my first TC the doctor commented on my blood sugar being kind of high (it was either 142 or 124- I can't remember which ) and it has been in the low 100 range during fasting blood tests- pre diabetes range. It's also gotten in the sixties ... mom is type 2 diabetic so when I got really grumpy while hungry she tested my blood sugar (getting abnormally grumpy and irritable when hungry was always something she'd wondered about).

Anyways I have left temporal lobe epilepsy. Mostly simple partial but have had secondary generalization a few times. The generalization has always happend after lunch. Also my blood pressure tends to naturally run low, but after my TC seizures it was really low (like 64/45).


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Yes, Cint, he was recently diagnosed with low thyroid levels, and is on meds for that now. His neurologist is also scheduling an MRI for a hypothalamic hamartoma (due to precocious puberty and gelastic seiuzures, in addition to the tonics and tonic/clonics). But in researching that, it occurred to me that there may be a strong relationship between metabolic issues and some forms of intractible epilepsy.

BTW, Cint and Cazzy -- did your seizures begin in childhood?

As far as diabetis, we check Jon's blood sugar regularly because he's on the Ketogenic diet. However, a year ago, when he was seizure free, his blood sugar levels were always low, and now that he's having daily seizures they're almost always high, even though he consumes almost no carbohydrates. When I say "low" and "high" I mean low as in 60's or 70's (normal for Keto diet) and high is anything above 85, which would be "normal" for someone not on the Ketogenic diet, but doesn't make sense for him.

My seizures started when I was 22 years old. My diabetes is due to a drug for bi-polar. For me, my endocrinologist wants me to keep my blood sugar levels 80-120.

And I also think there is a connection between metabolic issues and retractable epilepsy. Look here:

http://professionals.epilepsy.com/page/metabolic_disorders.html
Metabolic disorders cause seizures in three ways:

*alteration of intracellular osmolality
*depletion of substrates essential for cellular metabolism or membrane function
*intracellular accumulation of toxic substances

and more:
http://professionals.epilepsy.com/page/electroab_hypoglycemia.html
 
I have all but the urinating a lot and hungry and that's due to good ole topamax makes me not hungry and I have generalized epilepsy all over the brain
 
acpollard2010 -- do you remember if you had excessive hunger or thirst prior to going on Topamax? and...how old were you when you first started having seizures?

And...is the Topamax effective for you?

Jon is currently on Zonegran, and that curbs his ravenous appetite and thirst. And it controls his tonic/clonics and gelastic seizures, but not the tonics. The only meds that have seemed to work at all for Jon are Topamax and Zonegran -- I wonder if they have more of an effect on metabolic issues than other AEDs? And obviously the Ketogenic diet would have an effect.

Cint, thanks for that link
 
OK, I looked at that link, and it referenced the connection, but didn't say WHICH type of metabolic disorders could cause seizures, or what sort of treatment would be helpful.

Also found this link
http://onlinelibrary.wiley.com/doi/10.1111/j.1445-5994.1982.tb02650.x/abstract

I guess where I'm trying to go with this is whether some types of intractible epilepsies can be treated by treating the underlying metabolic disorder. In Cint's case, there are 2 metabolic disorders -- diabetes and hypothyroidism -- but could there potentially be an underlying cause for those 2 metabolic disorders that is also related to epilepsy -- say...a malfunction of the hypothalamus or some other organ like that?
 
1 was 15yrs old when mine started not as young as jon and thirsty yes hungry no but mine has always been difficult drs say.
 
So...it sounds like they started when you were going through puberty?
 
I have had a couple of instances where I've had three of those symptoms together (frequent thirst, frequent urination, odd sleep patterns).

I have complex partial seizures.
 
The blood sugar, frequent urination, extreme thirst and stuff sound like Diabetes and the eye dialation could be related to thryoid as well as the sensitivity to cold, clasic thyroid symptoms. I have mild Hypothyroidism & my thyroid levels go up and down. You should get tested for both and the thirst could also be dehydration or related to meds you take. You can have seizures with diabetes and thyroid.
 
Jon's been tested for thyroid, and had low thyroid levels for which he takes meds. His levels were normal when tested a couple weeks ago, but still having seizures when drinking cold water or getting too chilled -- hard to get chilled in the hottest city in the world, but sometimes restaurants or stores have the AC really high. He had a seizure in the coffee shop at the hospital on Monday -- I think it was because of the cold air, but also he was staring at the light, so it could have been that -- or just a random seizure.
 
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