Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

New Here: First Seizure Questions: Adult onset?

Thu, 05/22/2008 - 23:46

Hi, New here: A little background 1st:
I had my 1st seizure about a few weeks ago. My husband called 911 when he woke up to hear me making sounds and struggling. He said I was jerking, eyes rolled back, moving everywhere, not responding, no clue he was there. I didn't respond to 4 paramedics, an ambulance ride. When I came around I didn't know where I was and my tongue was bit up. I couldn't hardly talk. My blood sugar was very low and I had a headache on the left side of my head. I did not know where I was which caused hyperventilation. With not one around, not memory of what happened. My husband was still at home waiting to come and have someone stay with the kids. Once we were all settled and my husband could get there and tell what happened, I got the full work up. MRI, EEG you name it they did it. I stayed at the hospital for 2 days. My EEG spiked and I had a seizure with that. So Complex Partial Seizure left frontal lobe with secondary generalization. I did a sleep study, results soon. On Depakote, no driving for 6 months. I have had simple partial seizures after the hospital visit.
My son has seizures as well and on Depakote/Tegretol. He had a stroke at birth so they say my seizure and his seizures are not related. His is due to brain injury at birth. The Dr. feels that I am under stress...well yea stay at home mom to a boy that had a stroke, not to mention other stuff. The Dr. said stress triggers seizures. They said I could be having tiny seizures in my sleep then the big one the other day.
Questions:
Many of my friends are asking me if adult onset seizures are common? I forgot to ask the Dr.
Will this be the last big one? Or more to come? If I have another one the 6 month driving starts over so did some of you not drive for a year?
I am depakote and they will raise it up to the right dose for me gradually. I am bit overweight anyway....I heard it makes you gain??
If my sleep study comes back saying I have sleep apnea which caused the seizure, won't a cpap machine help and I really don't have a seizure disorder??
Thanks for reading!

 

Comments

Re: New Here: First Seizure Questions: Adult onset?

Submitted by chahanpe on Thu, 2009-02-12 - 12:54
Hi Jason, I hope you are doing well.  From what I have read, getting a lot of exercise is really key to warding off seizures and minimizing their duration.  We, too, are looking to beat this without the meds--they are so, so bad!!  Check out the Mayo clinic website for some ideas about diet, stress and stuff to avoid (like caffiene, alcohol, aspartame in gum, etc).  I know that in some places doctors are using the Atkins diet, no kidding, to treat epilepsy in kids.  It keeps the blood sugar very low, and the body gets its energy from buring fats.  Not everyone can do it, because you have to eat a lot of proteins and fats and very few carbs, but the ketones that develop as your body burns fats for fuel see to alleviate or inhibit seizure activities.  ANyhow, do post if you find other useful therapies, as I know we all would love to know.  I will do likewise.  We are going to try accupuncture.  My husband is also taking liquid electrolytes twice a day, as they seem to normalize brain activity and stabilize brain patterns.  Also, he is taking a lot of B vitamins to help with the normal enzyme functions in the brain.  These are two cheap and easy to take supplements that have no side effects.  Your anxiety is probably linked to the seizures, so going after it would seem like a way to handle both...  I know my husband used to smoke pot a lot, mainly as a stress-reliever, and I think it could be part of the problem, but other people are using it to treat their seizures.  I wish some med clinic would do some better studies on it regarding seizures and seizure treatment, as it seems a better understanding of how it works both negatively and postivlely is important.   Anyhow, good luck with your anxiety and your seizures and finding a way to de-stress.  Let us know what works.

Re: New Here: First Seizure Questions: Adult onset?

Submitted by Tina Davis on Thu, 2009-05-21 - 14:59

Hi Jason... I have been on Depakote for the past 5.5yrs and for about 9mths now have been having severe side effects from it. I was on 1500mgs daily and have taken it back slowly to 750mgs. I find it totally smashes my thought processes and concentration, creates nausea and recently I've gotten the ringing in the ears. All of this creates extreme anxiety and stress which in turn leads back epilepsy. I have tried switching to Lamictal but that gave me even worse side effects. I have also tried Tegretol - yuk!

I'm currently not driving which is a problem as I have 2 small children but I don't trust my concentration at the moment.

I have recently started seeing a counsellor to discuss all of my issues relating to medication, anxiety and life in general (we recently moved to USA from Australia) and that is helping. She also suggested I get to a neuro who specializes in Epilepsy to help me transition to another medication safely. That might be something to consider.

There are mixed messages about smoking pot with epilepsy. Some people swear by it but it totally makes me anxious and paranoid and that is one of my triggers so I avoid it totally. You are totally right about keeping fit and healthy and it having a good effect on E. Good luck with your issues. You are doing a great service by becomming a fire fighter - hang in there!

 

Hi Jason... I have been on Depakote for the past 5.5yrs and for about 9mths now have been having severe side effects from it. I was on 1500mgs daily and have taken it back slowly to 750mgs. I find it totally smashes my thought processes and concentration, creates nausea and recently I've gotten the ringing in the ears. All of this creates extreme anxiety and stress which in turn leads back epilepsy. I have tried switching to Lamictal but that gave me even worse side effects. I have also tried Tegretol - yuk!

I'm currently not driving which is a problem as I have 2 small children but I don't trust my concentration at the moment.

I have recently started seeing a counsellor to discuss all of my issues relating to medication, anxiety and life in general (we recently moved to USA from Australia) and that is helping. She also suggested I get to a neuro who specializes in Epilepsy to help me transition to another medication safely. That might be something to consider.

There are mixed messages about smoking pot with epilepsy. Some people swear by it but it totally makes me anxious and paranoid and that is one of my triggers so I avoid it totally. You are totally right about keeping fit and healthy and it having a good effect on E. Good luck with your issues. You are doing a great service by becomming a fire fighter - hang in there!

 

Re: New Here: First Seizure Questions: Adult onset?

Submitted by chahanpe on Thu, 2009-02-12 - 12:42

Hi, I am writing because my husband had his first known seizure last October--back-to-back grand mal, lasting over 7 minutes.  Was disoriented, dizzy, imbalanced, and totally confused for several hours.  Then he had the second one, 5 minutes long, a couple of days ago, but came out of it better.  It was very horrible to witness, and I am really having trouble with the doctors in our town.  All they do is repeated CT scans, but on the AAN website I see that they recommended protocol for first time seizures is a EEG within the first 24 hours to pinpoint the part of the brain where they begin.  The doc here just wanted to write a prescription for dilantin and send us on our way.  I have researched all the drugs and my husband and I agree they are too seriously bad in their overall effects for him to take them unless there were absolutely NO other alternatives.  We have ad a heck of a time trying to find a good sleep specialist, a neurologist who is not a drug pusher, and someone who will take a look at my husband's total health situation.  Generally his is in good health, but he has an old back injury from getting hit by a car and it re-aggravates from time to time, including right before both of these seizures.  And although he has not been diagnosed with sleep apnea, he does snore, stop breathing, and breath in a really constricted way at night--enough so that I wake suddenly aware that he is not breathing and jostle him and he takes a big breath.  He also has recurring ear infections and is scheduled for a mastoidectomy next week, but the CT scan showed no spreading of the ear infection or erosion of the bones that would suggest any correlation to the seizures.  We have recently found that two of our close friends also had adult onset of grand mal seizures, and like my husband, only in their sleep.  One was diagnosed first with epilepsy, but then changed to sleep disorder.  I wonder if my husband has been having smaller seizures before this, in his sleep, but we do not know.   He used to be a regular pothead, and drank a lot, though he does not drink hardly at all for the last few years.  However, I have read that even one or two drinks can trigger a seizure in someone who has any history of heavy drinking, as the brain chemistry is all set on withdrawals, even if the person was not considered an alcoholic.  ANd as for pot--does anyone really know how it affects the neurotransmitters?  It seems that in a healthy person, long-term frequent use of pot makes them suspeptible to seizures and over time greatly increases the likelihood they will develop seizures as the neurological activity in the brain is altered and more unpredictable.  BUt in people who did not use it and who already started having seizures, it seems that medical marijuana might act as an anti-seizure med, perhaps in a homeopathic (like treats like) kind of way and by reducing stress.  Does anyone know more about this?  Our doctor won't even realy discuss it or do the research to give us any answers, but I feel strongly that it is important to know.  Oh, I forgot to mention, my husband's seizures started as partial complex seizures which then rapidly became secondary generalized tonic clonic (grand mal) seizures.

It seems, too, that there IS some residual effects of the seizures, in spite of the fact that the doc said they would not last, and the CT and blood work being normal.  He is more forgetful, started dong this thing with his lips (kind of like the lip-smacking he did while going into and comiing out of the seizures) and seems more aggitated than he used to be.  Have any of you experienced it?  How are all of you doing now?  Please keep writing on this blog if you can, as it is so helpful and supportive of everyone!!

Has anyone tried accupuncture for their seizures or had any luck with that or other therapies?  I would very much appreciate any feedback and discussion from the folks who read this blog.  Thank you all and I am gald this is a here for people to communicate about these matters.

Hi, I am writing because my husband had his first known seizure last October--back-to-back grand mal, lasting over 7 minutes.  Was disoriented, dizzy, imbalanced, and totally confused for several hours.  Then he had the second one, 5 minutes long, a couple of days ago, but came out of it better.  It was very horrible to witness, and I am really having trouble with the doctors in our town.  All they do is repeated CT scans, but on the AAN website I see that they recommended protocol for first time seizures is a EEG within the first 24 hours to pinpoint the part of the brain where they begin.  The doc here just wanted to write a prescription for dilantin and send us on our way.  I have researched all the drugs and my husband and I agree they are too seriously bad in their overall effects for him to take them unless there were absolutely NO other alternatives.  We have ad a heck of a time trying to find a good sleep specialist, a neurologist who is not a drug pusher, and someone who will take a look at my husband's total health situation.  Generally his is in good health, but he has an old back injury from getting hit by a car and it re-aggravates from time to time, including right before both of these seizures.  And although he has not been diagnosed with sleep apnea, he does snore, stop breathing, and breath in a really constricted way at night--enough so that I wake suddenly aware that he is not breathing and jostle him and he takes a big breath.  He also has recurring ear infections and is scheduled for a mastoidectomy next week, but the CT scan showed no spreading of the ear infection or erosion of the bones that would suggest any correlation to the seizures.  We have recently found that two of our close friends also had adult onset of grand mal seizures, and like my husband, only in their sleep.  One was diagnosed first with epilepsy, but then changed to sleep disorder.  I wonder if my husband has been having smaller seizures before this, in his sleep, but we do not know.   He used to be a regular pothead, and drank a lot, though he does not drink hardly at all for the last few years.  However, I have read that even one or two drinks can trigger a seizure in someone who has any history of heavy drinking, as the brain chemistry is all set on withdrawals, even if the person was not considered an alcoholic.  ANd as for pot--does anyone really know how it affects the neurotransmitters?  It seems that in a healthy person, long-term frequent use of pot makes them suspeptible to seizures and over time greatly increases the likelihood they will develop seizures as the neurological activity in the brain is altered and more unpredictable.  BUt in people who did not use it and who already started having seizures, it seems that medical marijuana might act as an anti-seizure med, perhaps in a homeopathic (like treats like) kind of way and by reducing stress.  Does anyone know more about this?  Our doctor won't even realy discuss it or do the research to give us any answers, but I feel strongly that it is important to know.  Oh, I forgot to mention, my husband's seizures started as partial complex seizures which then rapidly became secondary generalized tonic clonic (grand mal) seizures.

It seems, too, that there IS some residual effects of the seizures, in spite of the fact that the doc said they would not last, and the CT and blood work being normal.  He is more forgetful, started dong this thing with his lips (kind of like the lip-smacking he did while going into and comiing out of the seizures) and seems more aggitated than he used to be.  Have any of you experienced it?  How are all of you doing now?  Please keep writing on this blog if you can, as it is so helpful and supportive of everyone!!

Has anyone tried accupuncture for their seizures or had any luck with that or other therapies?  I would very much appreciate any feedback and discussion from the folks who read this blog.  Thank you all and I am gald this is a here for people to communicate about these matters.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.