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Posted 7/22/2010 3:42 AM (GMT 0)
Hi everyone! I don't usually post here, as I've been blessed with my experience having epilepsy thus far. I was diagnosed over 5 years ago, and have had 2 tonic-clonic seizures that day, and have only had one tonic-clonic seizure since. I say blessed, not because I have epilepsy, but because the medication worked for me to control the seizures, and I understand that for a lot of people it isn't that simple. I titled my post low sodium seizures, because I had one seizure a few years ago that the paramedics and the hospital staff diagnosed it due to low sodium. Now I have to be very careful of how much liquids I consume daily, and try to always add more salt onto my food. I eat way more salty stuff then I ever would care to to balance it out. I am just simply wondering if there are many more out there that have to worry about their sodium levels to prevent seizing, and if they think it's a result of the medication? It doesn't take much for my salt levels to start dropping and I notice it because I get a head rush type feeling a lot more often and that's exactly what had been happening for about a week (getting progressively worse) before I had a low sodium seizure and went unconcious. I kinda think that it's because of taking Tegretol, but my neurologist won't admit that it's a possibility...so I've just left it alone, and done the best that I can with way upping my salt intake. Anyone else in the same, or a similar boat? I'd love to hear from you.

-Ellie
Posted 7/27/2010 4:27 AM (GMT 0)
Ellie

Wow, I find this very interesting.  I always heard that too much sodium was bad for your heart, causes high blood pressure and increases your risk of stroke.

I would think that increased sodium would increase your chances of triggering a seizure.

I've had epilepsy for 31 years and this is the first time I've ever heard of anything like this.

Please post any other info. that you find out about this.

Randy

Posted 7/27/2010 5:28 PM (GMT 0)
Well let me say that you have surprised me too...because I wasn't aware of how few people experience this. As I said I do have just plain 'ol epilepsy all on it's own. But a couple years ago I started getting light-headed, and slightly dizzy on occasion..I just got used to it for about a month at the most, until one morning when I was getting up early to go to work. I woke from my alarm, stood up (probably fast) and then walked to the kitchen. By the time I got there I was feeling nausious and thinking that I might have a bad flu. I made it to the bathroom, where by the time I got on the toilet (excuse the "crudeness") I felt HORRIBLE. I couldn't move, because if I did I felt like my world was going black. Within one min my whole head was wet with sweat, and if I moved an inch I felt like I would fall over. I couldn't even barely talk. I did however manage to call out for my husband, who came to help. Man I freaked him out. All I knew was to get down to the floor. I even had the sense to tell him that I would probably pass out. I did with a seizure for almost 3 minutes...I woke up on the floor and shortly after that the paramedics came and did there tests. I got driven to the hospital and they told me that my sodium was what caused the seizures. I, who never had a problem before that, all of a sudden have to be vigilant in regards to liquid intake. How bizarre, heh? The only thing that I can come up with is that Tegretol is known to mess a bit with the way your body equalizes your electrolytes. I can't remember the specific medical terms. I have seen that again and again, and I figure that it's a bad side effect of my medication. I have had my sodium levels drop dangerously a few times since then and feel horrible until about a week later (and MUCH salty food eaten) when they level off. It's really weird I know...but I would LOVE to hear of anyone else with a similar experience. That was near the most frightening moment of my life. And it ended in a seizure. When I first was diagnosed it wasn't as scary, because the moments before I seizured I just felt "weird" and out of sorts, not like my whole body was shutting down on me and sweating from head to toe.

Anyways, I definately am NOT one that is told to watch my salt intake for eating too much *L* But on the flip side...too much salt can be bad for your kidneys too I've heard...and I've got lupus so that does worry me a bit. I am just going with what my docs have told me to do, and I miss drinking a decent amount of water.

-Ellie
Posted 10/10/2010 4:35 PM (GMT 0)
Hi, I would encourage you to get reliable information on the relationship between serum levels of salt and the salt you consume. I think it may confuse things things if I tell you what my dietitian told me. I have Cystic Fibrosis, genetically inherited disease resulting in low levels of salt in the cells. I may also have one a seizure at age 5 and have the head rush things you spoke of accompanied with visual migraines, I enjoy both a great deal but not the depression that sometimes follows. I try to get my medical info from places like the National Institute of Health, the CDC and the FDA. there may be equivalent organizations in other English speaking countries, NZ, Australia, Canada, UK and Ireland. Good luck!
George
Posted 8/26/2011 10:36 AM (GMT 0)
I had a seizure over 2 years ago and unfortunately the neurologists (had seen and emailed too many to mention) were too busy trying to ban me from driving as opposed to treating (or listening to) the patient. I refuse to take any medication (had a bad experience at 18 when a Dr tried to kill me with penecillin, still to this day Drs seem to try it, stating most people say that but we don't believe them!!!!! because other drugs are more expensive). I have no faith in the medical profession.  I was born with brian damage to my left temporal lobe (caused by the birthing team, but not diagnosed for 52 years!!).  Due to my condition I rant a bit and I'm sorry for that, but the intelligent ones amongst you can pick the bones out of what I'm trying to say.  At no time in the last 2 years did any neurologist suggest my condition was due to a combination of lack of sodium and stress.  I had been sitting in my south facing conservatory doing a new very stressful job and excerising in heat up to 120 degree over the last 2 years.  Like most people I try to live healthily and did not consume too much salt, but in my case (I still play soccer at my age) this was causing my seizure.  I only worked this out after speaking to my friends mother who had a seizure on an aeroplane coming back from holiday in Turkey and had to have the plane divert back to treat her as her sodium levels were so low.  Unfortunately for me the neurologist(s) were only interested in labelling me epiletic, which I knew I wasn't. I've been told sea salt is best to take as it fully disolves in water  I suppose I should be lucky I wasn't born in the 17th century, otherwise I would have been burnt at the stake as a witch for being left handed!!!!!

Posted 11/23/2011 10:13 PM (GMT 0)
Ellie,
I hope you are able to see this post since you posted last year. I too am on Tegritol and I am certain in lowers my sodium and my seizures are brought on due to my low sodium. I was first diagnosed with Epilepsy about 10 years ago. My symptoms first started with a whole year of just passing out. It happened at the gym, at work and at home. It was finally at the end of that year I had a full blown seizure. All the tests they did on me were normal, still another year of passing out and then another seziure the second EEG had finally shown eplileptic activity a year later and they finally put me on seizure meds and then ended up on Tegritol-XR. But I always found if I stayed well hydrated i had no problems. Also, my dose was 300 mg a day. If I had too much caffene for example and little water intake I would start to get auras. For a long time I was in control. It was after I found out I was pregnant with my second child I had another seizure. It has been downhill ever since. All they have done thus far is every time I have a seizure or have aura issues is up my dose. I am on 1200 mg of Tegritol a day! I also am on Zonegram as of last December. Ever since the birth of my second child in 2009 I have had 6 seiziures and many auras that have kept me home from work and or sent me home early. I can always tell my sodium is low because I get foot cramps and leg cramps. Doctors don't seem to think the sodium issue has anything to do with my seizures. I almost feel there has to be some underlying reason for my original low sodium as well as the drug induced cause. Although all my MRIs have been normal? I also have heard taking a magnesium supplement is good. Also, exercising is almost impossible if i sweat too much I will have seizure issues. I hope this helps. All of these post have really helped me!
Posted 12/11/2011 7:21 PM (GMT 0)
Just a question but everyone experiencing these seizures was born with them right. You have to be born with them in order to have them.
Posted 12/12/2011 1:36 AM (GMT 0)
Nvm stupid question. But it can happen because of water intoxication but you're level would have to be 75 or lower. Tegritol I guess lowers it. Im on Lisinopril and Norvasc. Two dioretics that lower sodium just a bit. Also The Trileptal does that too.
Posted 12/19/2011 7:31 PM (GMT 0)

givinguponit24 said...
Just a question but everyone experiencing these seizures was born with them right. You have to be born with them in order to have them.

Giving,

No , I had several major concussions when I was young, then developed a Seizure disorder at the age of 42. There are no stupid questions here. information is key to understanding what is going on with you. This website and others is a good way of getting info. but the best way is to ask ask ask your Neurologist every single thing you don't understand. good luck and hope you stay well
Posted 5/19/2013 9:42 PM (GMT 0)
I'm 60 years old and was diagnosed with epilepsy at 16. My doctor just decided to start testing sodium levels and they have been running abnormally low. I had to cut back on my nighttime tegretol. I've been trying to research whether my sodium is and always has been the problem or my medication.

Wouldn't it be odd if I was suffering from low sodium and not from Epilepsy! I started taking one salt tablet twice daily as well as being very liberal with the shaker. It brought my level up to normal but I still wonder!
Posted 5/19/2013 9:47 PM (GMT 0)
The salt pills I take are called Thermotabs Salt Supplement Buffered. A lot of pharmacies don't carry it but I have found it at Walmart in the pharmacy (you need to ask). Every other place I've looked in Palm Springs anyway didn't order it or claimed to be out. It is usually behind the counter where you pick up medication. A lot easier than oversalting or only drinking sports drinks.
Posted 6/3/2013 7:48 PM (GMT 0)
Hi all. I come across this post by researching seizures caused by low sodium. I recently had a grand mal seizure brought on by low sodium. Lookly I was in hospital waiting room attending appointment for my daughter. I approached reception desk and without warning had full blown seizure. I was lucky to receive medical treatment straight away and was reported to have low sodium at level I think was 125. When I researched this this did seem very low. I have epilepsy and I am on tegretol - it's noted on leaflet of meds that it can cause low sodium. I used to be on epilim upto 6yrs ago and was seizure free completely - changed because I wanted children. Since I've been on tegretol I have had couple of unexpected seizures same as previously described and numerous fainting episodes which doctor has put down to other things ! I wonder whether tegretol is the problem causing the lowsodium or whether I have suffered with this for some time. Doctors have told me putting extra salt on food would not make any difference to sodium levels so it means limiting fluid intake. I am waiting an appointment from neurologist and I'm thinking I want to change to another med. First, I wanted to do as much researchas possible and any information is welcomed smilewinkgrin
Thanks I know this is an old thread so I hope someone sees this!
Posted 6/3/2013 8:04 PM (GMT 0)
Don't believe them.. the Doctors I mean. When my doctor looked at me like he had no idea what to do I took the bull by the horns. I reduced my nighttime dose as I never have seizures at night. That reduced my intake from 1200 mg a day and to 1000. Then I started taking salt pills as I stated before. I took one in the AM and one at bedtime.

A followup test revealed that a long standing sodium deficiency was now gone. I do follow up with blood tests every few months for awhile to monitor it.

In my case the doctor said the same thing and the doctor was wrong. That does happen. They really don't have a lot of experience with low sodium. It isn't common.
Posted 6/7/2013 10:49 AM (GMT 0)
Cheers for that. I am going to look into the salt tablets and see how it goes for me with followup check on my levels. Seems like the sensible thing to do. Thanks :-) I'll try and find some more active forums on the subject also if there are any out there. Thanks again
Posted 8/1/2013 4:18 PM (GMT 0)
I had a seizure 4mo ago and then randomly two in one day a couple thursdays ago.  I have been seeing the neurologist but refused meds until absolutely had to.  I really thought it was my Merina IUD since i had felt like crap ever since getting it 6mo before (low energy and hurting, ect)  Both my obgyn and primary care dr shrugged it off saying it couldn't cause seizures but my personal research showed there were many others haveing really negative effects since having it put in.  I went from working out an hour each morning to hitting the snooze button for an hour + and dragging myself out of bed to coffee all day long.  I drink 2+ gallons of water a day. 

So i had these seizures and the dr's think it was from the scar tissue in my brain from menengitis as an infant but they don't understand why it has decided to surface now.  I feel they are trying to stick me in a slot and not really try to understand what is going on with me personally.  I know my body and it's been telling me something wrong since i got the IUD put in so i should have listened.  My research shows that it took people's bodies an average of 6mo to get their systems back to normal after having removed the IUD so i had hoped that getting on Tauring and Zinc to push the copper out of my system would straighten me out quicker but everytime i have a seizure i cannot drive for another 6mo. 

I was speaking to a coworker who says her daughter had epilepsy at a young age and her primary care dr, who they love, reccomended she go to a cardiologist (dr. Wannamaker in Chareleston) where they did some sort of test that showed her seizures were directly related to her sodium intake.  So she eats lots and lots of sodium and hasn't had a seizure since and i don't think she's on seizure meds. 

I'm taking keppra currently, and feel like crap, but i am also setting up an appointment wiht a cardiologist to explore this option.  I really feel that my case is outside the box and for me to develop seizures at 31 instead of the usual teenage years means there may be more than meets the eye.  And often times drs will prescribe meds because they have to cover their butts. 

Posted 8/4/2013 5:26 PM (GMT 0)
traciem,

  You're story sounds a lot like mine. I was diagnosed with epilepsy back in Feb at the age of 32. I went from being active, working out 5 times a week, to not doing much other than working.

   

  My first seizure was in Feb. 2012 at my house. It was around midnight and I was trying to fall asleep in my bed when suddenly I got extremely nausea and had to run to the bathroom to vomit. After I finished I was on the way to my bed when I passed out and face planted into the floor. luckily, my husband was there and eventually helped me to bed and that's when I had my first seizure.

  My second and hopefully last one, was a year later Feb. 2013. I worked all day and then went to do a spin class at the gym and worked out a bit after the hour class. I went home and was laying in bed around 9 pm and had a seizure. my husband was there and witnessed it again. I remember for weeks before that seizure, I had severe shin splints which I never had before. I was working out 5 times a week, about 90 mins each time and drinking a ton of water since I was sweating a lot. After that seizure, a neurologist put me on keppra which I didn't tolerate well and now i'm on trileptal.

   I'm starting to wonder if the second was caused by a low sodium level. Since I was working out a lot and was extremely dizzy and not feeling quite normal for awhile before that. Maybe its just a coincidence that I had another seizure and not really epilepsy ? I really want to be able to live life without being on an AED for the rest of my life. have you noticed any leg cramps or anything out of the norm? My sodium level was 135 a couple weeks ago and my neurologist is having me take another blood test in a couple weeks to see how it is. Also, my mother had epilepsy when she was alive, so many ppl think that has something to do with me inheriting it from her in some way. which, up until recently, I've thought that's the case.

   it's also difficult for me to do anything other than work on a daily basis. are you working full time? I really hope at some point my life will get back to normal at some point

Heather

 

Posted 12/12/2013 6:31 AM (GMT 0)
I had my first seizure at about age 46. I got exposed to a massive dose of permythrin, which is in dog and cat flea powder. Be careful around Terminix Termidor too! I removed all carpets with flea powder and my dog stopped having seizures. But, I had been placed on Trileptal. Then, I found out the hard way that it causes low sodium. I got dehydrated and stressed, and had a seizure and taken to the hospital, and was diagnosed with seizure caused by low sodium, well below 125 and dehydrated so bad, they almost could not get blood out of the blood vessels between my fingers!. The doctor told me Trileptal causes low sodium. I now, eat all the salt I can, drink bottles and bottles of Gator Aide, and got my sodium, 'all the way up' to 128! I also take Keppra now and have been seizure free ever since. The sodium levels are 125 to 135. Low sodium causes the brain to swell. My wife was killing me telling me I was eating too much salt. Truth is, her constant nagging and telling me not to eat red meat and salt almost killed me! Definitely keep an eye on your sodium!
Posted 2/22/2014 9:15 AM (GMT 0)
Pls excuse my english, I'm european.

I think you are so right! I have allways been low on sodium, even before epilepsy (since 5yrs), but did'nt know until now. I checked back. Could be Trileptal made it worse, but tried to reduce dose without any noticable effect.

My sodium issue is now so severe I'm in hospital. My body will not contain sodium. If I add sodium orally I get severe stommach pain, need to have it intranevously. Also suffer with diarrhea when sodium is too low. I'm stuck in hospital and they can't give a diagnosis.

Talked to my distant cousin on FB yesterday, her daugther had severe epilepsy since birth, and guess what - diarrhea. Twenty years later a doctor found out her sodium is too low at all times. Both epilepsy and diarrhea is gone using a medication called GEM (in Europe). Can't wait to talk to the doctor and try it out :-)

But why do I have this sodium condition? I have pigmentation lines in handpalms and copper colored urine. I think it could be kidneys, the doctors do not agree (because I suggested it self?), their looking for all other reasons. Also have kidney diseases in family. Anyone?
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