New member with MANY questions

[cateyes64]

I am a member of CWE, and I was formerly "amdonquis" but I have changed my username to "cateyes64". It's a logging in issue.

Hi, everyone. It's good to be back. Here's what's going on.

I have epilepsy, characterized as partial seizures which secondarily generalize. I was diagnosed at age 13 and am now 45 years old. I have been on numerous anticonvulsants in that time period. I have been on Lamictal for a little over two years now and have had success with that. I now take Lamictal and Keppra. I had been on Topamax since October 2003, but the neurologist and I decided to discontinue it because it was no longer effective in controlling my migraines. Lamictal was added two years ago because I was having too many breakthrough seizures with Topamax. Oddly enough, since discontinuing Topamax, I no longer get the severe headaches.
Recently, within a period of 2 ½ weeks, I’ve had three seizures. Two of them were on the same day, about five hours apart. I went to the ER, was examined and hours later released. A CT scan was was normal, as well as a lumbar puncture. The LP had a slight increase in protein but was deemed normal. The ER docs were very concerned because right after the first seizure I immediately had a level 8 headache. It wasn’t gradual in nature. It struck all of a sudden like a lightning bolt. A week or so later, I had a MRI to check for small tumors, cerebral aneurysms, etc. That too was normal.
Since Oct of last year, I’ve been experiencing “auras”. This has never happened to me before, as all of my seizures have come without warning. The “auras” can last anywhere from 30 minutes to 2 hours, and sometimes I don’t seize at all. The auras are very unpleasant. I spoke to the neurologist about it, but she said they’re not auras. She said what I’m experiencing might indicate a change in migraines, but it’s not characteristic of seizure auras.
Unlike my tonic clonic seizures, these latest ones begin with the aura, and the actual loss of consciousness is preceded by a stuttering sound instead of the guttural groan common in epileptic seizures. I say epileptic seizures because I am being told these are psychogenic nonepileptic seizures or psychogenic non-epileptic seizures.
According to my neurologist these are “psychological” seizures brought on by stress. I was referred to an epileptologist last week to see if she could help shed light on the recent seizures. As it turns out, she was just a general neurologist, with no subspecialty, and the appt seemed more like a second opinion. Some of her comments were extremely condescending regarding these seizures. She asked about prior physical and/or sexual abuse, etc., as these can be triggers. She following this discussion by stating if I thought I was having seizures, then she believed I believed I was having seizures. I’m not a headcase! Then she said since I “feel” I’m going to have a seizure during these “auras”(isn’t this the exact definition of an aura???) it’s possible I’ just “willing” myself to have seizures. I told her if I were that skilled, then maybe I could “will” myself out of having them too! She said it’s not that she’s suggesting I’m not having seizures because seizures are very real for those who experience them. What a monumental waste of my time!
She did suggest I have a 4-5 day inpatient hospital study, complete with EEG monitoring and videotaping to see if they can isolate a “seizure” and analyze these new ones, as I have epilepsy and am possibly also having psychogenic non-epileptic seizures. The “epileptologist” in question recommended decreasing the level of anticonvulsants in order to trigger a seizure. I told her I won’t consent to that because I tend to injure myself during “epileptic” seizures. I’ve had numerous head injuries to date as a result and I’m simply not going to put myself at risk of another one.
Bottom line, I’m angry and incredibly confused. I have had numerous health stressors, to include a kidney transplant, bilateral native nephrectomy, etc. If these seizures were stress-induced, then why now? I’m five years post transplant and doing quite well. Is the stress a cumulative effect? Nothing I’ve read suggests so, nor was the “epileptologist” able to offer any explanation.

On a separate note…

I don’t know if this is related or not, but I thought I’d throw it out there. I recently saw a nutritionist, and I casually mentioned these three seizures. This was before the neurologist stated these latest seizures might not be epileptic in nature. The nutritionist recommended having my vitamin D levels checked. Before the results of the test came back, my doctor informed me my PTH was slightly elevated, and that could be indicative of a vitamin D deficiency. As it happens not only am I vitamin D deficient, my level is at 6.
Is it possible that seizures, epileptic or not, can be triggered by low vitamin D levels? How are low vitamin D levels connected to seizures, if at all? I’m aware of the correlation between anticonvulsants and vitamin D deficiency, but other than the osteoporosis, rickets, cancers and such, can they cause seizures? I’ve read severe vitamin D deficiency can cause hypocalcemic seizures. What about other electrolyte imbalances?
Lamictal and Keppra both interact with vitamin D, possibly leading to vitamin D decrease or absorption reduction. This is also the case with calcium channel blockers, and I am on one to control my hypertension.
Seems pretty straightforward to me, but I find I have many questions and few answers.
My neurologist and the “epileptologist” both say they don’t know anything about vitamin d deficiency causing seizures, but I’m curious. Could the so-called psychogenic non-epileptic seizures really be the result of a vitamin D deficiency???
Can anyone shed some light on this?


Thank you,
A

[Nakamova]

Hi cataeyes64, welcome back to CWE!

Regarding your auras -- they sound like epilepsy-related ones to me. These days the distinction between migraine aura and epilepsy aura is getting pretty fuzzy. While it's possible that the new seizures are psychogenic non-epileptic seizures, I would keep pushing for a second or third or even fourth opinion, and keep trying to find an epileptologist. And if you do have psychogenic non-epileptic seizures it doesn't make you a "headcase". They are very real seizures, triggered by stress, but don't have the electrical component. And some folks have both kinds.

Nutritional imbalances often play a role in triggering seizures, although I'm not sure that Vitamin D Has been explicitly implicated. More often the trigger is a deficiency or imbalance in electrolytes -- magnesium, calcium, sodium, potassium, etc. Because Vitamin D works with calcium to be used by the body, your low level could be an indication that something else is off. Unfortunately it's hard to test for a calcium deficiency via a blood test, since the body always makes sure that there's enough calcium in the blood (even if it has to steal it from the bone). But other deficiencies such as magnesium can be tracked. Perhaps you should have your nutrionist check for other deficiencies.

And/or you take a multi-vitamin supplement, or vitamin water. Those can help if you suspect an electrolyte deficiency. I recommend that you keep a seizure diary to track your seizures/auras along with diet, metabolism, sleep, hormones, etc. If you add a vitamin supplement to your diet you can see if it makes a difference. Additionally, it's possible that hormones are playing a role (sorry I don't know if you're male or female), since fluctuating estrogen levels also can trigger seizures.

Calcium channel-blockers actually have an anti-epileptic effect. Does their level vary at all, or do you take them as regularly as the Lamictal and Keppra?

Best,
Nakamova

[hootie]

I just googled vitamin d and seizures and came up with a link to the Vitamin D Council (sorry I can not post it...not allowed to post links yet). It does say that vitamin D increases the seizure threshold.

Can someone post the link for me? Thanks!

[Nakamova]

Here's the link:

http://www.vitamindcouncil.org/healt...d-autism.shtml

[alivenwell]

As I read your post, I wondered if your parathyroid was responsible for calcium levels, especially with kidney stones.
Also, with high blood pressure, have you regularly monitored your blood pressure readings at home? A high level of blood pressure or low sugar level can also trigger a severe headache.
I've personally taken vitamin D for several years and have had no problems with it.
Severe headaches can be triggered by foods as well such as MSG, lack of caffeine, fatigue and other factors.
Some others in here recommend magnesium and a B vitamin (don't recall which B vitamin off hand with Keppra). It might be worth investigating.

[Nakamova]

B6 is the one that helps with Keppra, although in general it's good to take it with the other B vitamins.