Modified Atkins Diet for Epilepsy

Re: Modified Atkins Diet for Epilepsy

Submitted by SeizeToExist on Sat, 2010-07-10 - 22:34

Living & coping since a teen in the 70's

Hi Barb - My husband had to get onto the computer for ebay - he's an avid Native American jewelry collector - funny how he hated my stuff when we got together 22 years ago, now he collects it!!  My seizures started when I was about 11 - around the time I started my period. I didn't know what they were though, because they were what I now know to be Simple Complex, which presented as a wave of disassociation, a feeling of panic & like I was going down a roller coaster, and sometimes I would lose control of my bladder. This went on for a few years. My mom knew about the bladder thing because my sheets would be wet, or my pants when I couldn't make it to the toilet on time. The 'spells' would happen only sporadically, and they were scary and horrible, but as a teen, I had my crushes and my wedding plans to Paul McCartney to plan....lol. Then, when I was about 14, and asleep - sharing a room with my sister - I had my first Grand Mal, this led me to UCLA to be worked up with a dx of Epilepsy and I was put on Phenobarbitol and Dilantin. I was somewhat conrolled, but very drugged - and not very compliant. My parents were divorced and I moved in with my Dad and Stepmom to Tucson, still on the same drugs, not real well controlled, but not completely compliant either. I never had a Grand Mal when I was awake - only when I was sleeping, but occasionally would have the SPS's. At about 17 y.o. I was put on Tegretol, at a pretty low dose and I felt like a new person, not a drugged feeling at all - my seizures were better under control - hardly any sleeping Grand Mals or waking SPS's, but I would insist that even though my drug levels were just borderline therapeutic, I keep my dosage low...I never wanted to feel like I did when I was on the phenobarb/dilantin.  Even though the seizures were happening sporadically, over the next 10 years is when we started to notice that they definetly seemed to have a cyclic feel to them, either ovulatory or around my period - even though my periods have never been real regular. I met my husband when I was 30, and when I turned 35, decided I wanted children. I was still on Tegretol, low dose - baseline therapeutic, so having breakthrough seizures every once in a while. I got pregnant right away after they made sure they got my blood levels up, and as I got bigger, my dosage increased incrementally - thought, because I was "with child", I didn't mind at all....and I didn't have any seizures what so ever when I was pregnant.  I think back a see what an Ass I was to keep myself borderline low baseline before that just to stay away from any dopey feeling....but Tegretol was not at all like Phenobarb/Dilantin anyway....Oh well. Anyway....about 5 days after my daughter was born I did have a whopper of a Grand Mal when I was asleep, but I was exhausted, and they had made me go through 48hrs. of labor before doing a C-section...hmphf  ]=(.  I stayed on Tegretol until my daughter was 4 y.o., then we tried to have another child (I was also on a low-dose BCP), with almost no seizures - still noticing the cycle relation, and having my male Dr.'s poo-poo me.  I was about a month pregnant when I started having Complex Partial Seizures @ 41 y.o. - never had them before. I came to, standing, in the doorway of my daughter's babysitters, with her looking at me like she saw a ghost. I didn't have a Grand Mal, but I did lose consciousness, repeated words, looked possessed - I guess. That's my seizure of choice now that I'm going through peri-menopause. I lost that baby. Had many more like that over the course of a year or so, usually with an aura (the SPS I spoke about), I didn't drive during that time, but I did fall in the street and break my jaw, fell another time into a waffle iron, went on many types and kinds of medications - none of them working...even started having drop seizures for a while where I had NO warning at all. Was worked up for surgery, but found out I had too much memory in my (L) Temporal lobe (that's where they think my seizures are coming from) to do surgery - though I think my memory is TERRIBLE; all the while noticing the hormonal cycle relation (even the fact that the seizures came back with my 2nd try at pregnancy) and having it disregarded by my male Dr.s, saying there was no such thing 'proved' as Catamenial Epilepsy. Well in about 2001-2002 I went to an Epilepsy seminar here in L.A., and Dr. Laura Kalayjian was speaking about Women s Issues with Epilepsy, and how they have different issues to contend with, and how Epilepsy itself affects them differently....and that USC, where she works out of, specializes in Women's issues with Epilepsy...and that was all she wrote.  She got me back on track, she's so compassionate and patient - she listens.  My other Dr.'s were trying me on every medicine that was coming out, but they weren't titrating me up, and then down....just on for a couple weeks, if no improvement, I was off.  But she took our time, and she got my seizures back under control to at least night-time only. Got me scheduling my seizures along with my periods to see if there was in fact a relation - there was.  Estrogen can lower you seizure threshold, whereas, progesterone can, in some, make you less prone to have seizures - Dr. Herzog, on the East Coast, is doing studies to show that adding natural progesterone to the latter half of your cycle can help some women control their seizures. Some of the funding of these studies has dried up, I don't know if it has to do with the upcoming Nationalized Medicine or not...I can only hope not. Right now I'm definetly in perimenopause...I have my periods sometimes, maybe 4 times a year - I'm on too many meds (Keppra, Vimpat, Zoneran, Klonipin - for restless legs, Xanax - when I need it after my CPS's I get very anxious as I'll have clusters that last for a couple of days), I am working as an Occupational Health Nurse, I don't drive, my daughter is 16 and headstrong, I'd love to lower my dosage on my meds (Dr. Kalayjian will help me with this) - though it's very common for seizures to get worse before it gets better - sometimes goes away all together after menopause, if it's Catamenial....That's why I'm looking into the Atkins will probably get into yoga for stress relief and flexibility. I'm always looking for alternative ways to help manage, and this site may prove helpful in finding new ways - though just like any internet site, I'm sure we'll have to check our sources. I know you'll have to check mine - sometimes my facts get screwed up - so check with someone who really knows, but you HAVE to find someone that believes in the hormone connection.....I really don't believe that's fiction, and neither does Dr. Kalayjian, who is the Director of the Residency program of Neurology and an Asst. Professor of Neurology over @ USC Keck School of Medicine - Neurology Dept./ it sounds like I'm name dropping, but I get so mad at some of these doc's that look down their noses at us who are experiencing the symptoms - we already feel bizarre enough as it is!!!

Well it looks like I've rambled enough. There's a lot of information out there, and I don't know how close you are to a teaching hospital or what kind of access you may have -  but they seem to have more knowledge of more up and coming treatments - everything is so expensive!!! Even yoga!!! Things get trendy these days, and it's an arm and a leg for it, back in the 60's and 70's it didn't seem like that....but, then, now I sound like my mom or grama.

Take care Barb!.......Robin