new member

[karinj]

Hi everyone! back in August of this year, I had a gran mal seizure while sleeping. I never would have known had it not been for my boyfriend waking me up. It was really scary and they took me to the hospital. I had all the scans and follow up exams and they found nothing. I also had bit completely through the side of my tongue, I was foaming and convulsing. I was out of it for about a week afterwards. I was doing fine, but last night I fell asleep on the couch and I was having really bizarre dreams. I woke up this morning and found that I had bit my tongue again, although nowhere nearly as bad as I had back in August. I'm not sure if it was just a bad dream or if I perhaps had another seizure. I just feel different this time. I don't feel exhausted and totally out of it this morning. I can think just fine. The only thing that scares me is the possibilty that I may have had another seizure. Any advice? Thank you!

[speber]

...write down what's goin' on lately, any changes that come to the forefront of your mind, events, diet, etc......

.........then chill out best you can and take it nice and slow. Could be nothing TOO serious, could be something more...but the stress of it all will do nothing positive for you!

Tunes, sports, yoga, art....lots of good stress-reducers!


Welcome!

[Bernard]

Hi Karinj, welcome to the forum.

Sounds like you had another seizure. There is more than one type. You can also bite your tongue with complex partial seizures and they might not "wipe you out" as much as the tonic clonic/grand mals do.

The tests they do at the hospitals (EEG, MRI, CAT scan, etc.) often turn up negative, but that doesn't mean you don't have seizure activity ongoing.

Have a look at the Epilepsy 101 thread.

[karinj]

I read all the information, and a couple of things interested me. I have had trouble sleeping for years. I know that I don't sleep properly and I wake up several times during each night. I have tried many things, including recently I take melatonin and valerian root to sleep. My doctor suggested this to me. I actually just moved about 1.5 months ago, to minimize stress and live in a place that is much safer for me (Idon't have to drive on a regular basis anymore because I have moved to an Island). I don't really know what to do at this point. I will be keeping records on anything odd or out of place. I am just so worried about this being a lifelong condition which will require medication (i don't like taking any medication).
What really puzzles me is why I have these seizures in my sleep. I read the information but I am still very confused about that. This is my second seizure. Thank you for any advice!

[RobinN]

Welcome Karin - My daughter does not have nocturnal seizures so I will leave that up to others to explain their understanding of why this happens.

I wanted to welcome you to CWE, and tell you I understand your not wanting to take medication. I just hate giving it to my daughter. She is on her fourth. As far as this being a lifelong condition.... my opinion is that you lived without for so long (or none that you knew of)... there must be a way to get your body back to that state of balance.

Look around the forum for all of the different alternative therapies, and reasons for siezures. We are trying meds, diet, and I hope to start her on yoga too. In addition I am going to take my list of seizure related disorders, that I have been finding, and show my daughters neurologist and ask why these are not being examined as causes.

[Zoe]

What really puzzles me is why I have these seizures in my sleep. I read the information but I am still very confused about that. This is my second seizure. Thank you for any advice!

Part 1:
Hi Karin,
I'm posting two responses, as one may be too long.
I hope you won't worry and scare yourself wondering what may be causing your seizures. Especially since you mentioned sleep problems why not get yourself evaluated for sleep disorders, which can trigger seizures?
Many things can cause nocturnal seizures. If your tests, EEG, MRI, came back normal this suggest whatever is triggering your seizures is not a brain problem. Were you evaluated by a cardiologist? Is there any history of heart problems in your family? Nocturnal seizures can be caused by different cardiac disorders too, so you may want to get a full evaluation by a cardiologist. Below is some information on cardiac disorders mistaken for seizure disorders. Magnesium deficiency can also cause seizures and heart problems so you may want to get evaluated for this and for any electrolyte disorder, as those can trigger seizure activity.

Below is further information and some links for you to explore. Do a lot of searching and ask a lot of questions. It is easy to get labeled with epilepsy or a syncope [heart spells] when your seizures may have another cause altogether. Welcome to the group. You'll find a lot of support here.

----
Epilepsy TreatmentMagnesium, which operates on inhibitory channels, has been found to be useful in many ... of children with various kinds of nocturnal seizures [medline]. ...
http://www.medrater.com/pages/conditions/epilepsy.aspx
A good nutrition evaluation may help rule out any problems related to nutrition that may be causing your seizures.

[Zoe]

Part 2:


"Long-QT Syndrome Easily Misdiagnosed As Epilepsy in Young People Unless ECG Performed, Physicians Caution
from Heartwire — a professional news service of WebMD


Shelley Wood

October 12, 2007 (Leuven, Belgium) - Physicians in Belgium are warning colleagues about a misdiagnosis they say may be relatively common, particularly among young patients, but easily prevented with electrophysiological studies. Writing in the October 2007 issue of Heart Rhythm, Dr Tom Rossenbacker (University of Leuven, Belgium) and colleagues describe the case of a 15-year-old girl, misdiagnosed with epilepsy at age 11 and treated fruitlessly with antiepileptic drugs for four years before her true condition--long-QT syndrome--was discovered [1]."
Full article:
http://www.medscape.com/viewarticle/564212?src=mp

This is a press release from the American College of Cardiology:

ACC News Releases

Contact: media@acc.org
Seizure-Like Attacks May Mean Cardiovascular Problems, Not Epilepsy

(July 1, 2000)--Physicians have long suspected that many patients being treated for epilepsy aren't actually suffering from the disease. Now a new study published in the July 2000 issue of the Journal of the American College of Cardiology reveals that the rate of misdiagnosis may be more than 40 percent.

"Two out of five patients in our study had been told that their blackouts were caused by epilepsy, and many were taking powerful drugs to treat the condition--with little if any benefit," explained lead author Dr. Amir Zaidi, of the Manchester Heart Centre at the Royal Infirmary in Manchester, England. "In reality, these patients had heart or circulation problems that could be effectively treated with cardiac drugs or pacemakers."

The study was born when local neurologists began sending Dr. Zaidi epilepsy patients who had uncertain diagnoses or who had failed to respond to anticonvulsant medication. In the resulting study, Dr. Zaidi and his colleagues put 74 of these patients through simple cardiovascular tests--head-up tilt tests and carotid sinus massage--to see if their problems were really cardiovascular in nature. In the head-up tilt test, patients are strapped to a table and slowly tilted until they are nearly vertical; blood pooling in the legs reduces blood flow to the heart and causes fainting in susceptible individuals. In carotid sinus massage, pressing on the carotid artery in the neck slows the heart down and causes fainting in susceptible individuals.

What Dr. Zaidi and his research team found surprised them. Almost 42 percent of the patients had been incorrectly diagnosed with epilepsy. Instead, many suffered from a severe form of fainting called vasovagal syncope.

"We were taken aback by the level of misdiagnosis, which was at least twice as high as expected," said Dr. Zaidi, noting that other studies have suggested misdiagnosis rates of only 20 percent. "The most important message of our study is that if a patient with seizure-like attacks thought to be caused by epilepsy does not respond to treatment, the physician should reconsider the diagnosis."

For Dr. Melvin M. Scheinman, of the University of California, San Francisco, the study's value lies in its discovery of just how common the misdiagnosis of epilepsy is.

"It has long been appreciated that apparent 'epileptic fits' may have a cardiac cause," said Dr. Scheinman. "The importance of Dr. Zaidi's study is to highlight the frequency of this association."
-----------------
http://www.acc.org/media/releases/hi...00/seizure.htm

http://heartdisease.about.com/cs/gen...opeseizure.htm

[speber]

If I have seizures that are NOT brought about by sickness...they are nocturnal. I've been taking the Valerian Root as well AND have had luck with Magnesium and Taurine in my diet.

I started using a CPAP to get better rest, which has helped, but the little 'twilight dream-state' moment in time 'right before waking'...is still a killer for me. If I EVER try to sleep in on a weekend to catch up I am putting myself at risk actually. You know how you can wake up and look around, and see nothing's going on and it's probably okay to go back to sleep? Somehow, I have to get up when I wake up...period......or it's a crap-shoot.......I can't try and go back to sleep for more. If I stay up long enough to get worn out again, I'll sleep fine.

I dream in technicolor and multichannel...it's beautiful and annoying at the same time. For once I'd like to have NO DREAMS....just wake up relaxed!

I'm curious...do you also suffer from RLS(restless leg syndrome)?

[brain]

karinj

Sorry you're having to experience
nocturnals, they're no fun. But like
Bernard posted. Visiting that thread
and what Zoe has posted, there's a
lot of reasons why that could be
causing it. Hope they find the reason
and you get treated for it!

And welcome to the CWE Forum!