long story short....8 years i've been experiencing this, about 4 times a year, always begin upon waking, early morning hours and come and go until noon, sensation comes over me, extreme nausea, deja vu is the weirdest part, it was overwhelming and sickening feeling, rushing thoughts came flooding at once, almost outer body feeling, rapid heartbeat and sweating~then it's gone and i feel depressed and sad and out of sorts for about 3 days....this past new years morning it started, worse than ever, lasted on/off all day and night and into next day..i decided to do something about it. i've been blown off for years by doctors, was in the ER twice, this time the doctor sent me to a neurologist at my urging to pacify me....diagnosis was temporal lobe seizures..i was relieved b/c through my own research i diagnosed myself and was happy to know iam not crazy....over the past several years i have been depressed on/off, out of sorts, have no patience and can't stand chaos and commotion...this could all be related...neurologist put me on 200 mg. of tegretol and i am going for an MRI and sleep deprived EEG..i have done TONS of my own research in the last few days and am going to go for a second opinion first prior to starting the meds...anyone have any insight to this, past experience or options, or surgery or anything...iam so relieved to know that all these years they were seizures and iam not nuts, but upset about the meds/side effects, i still want another child, i also ALWAYS had this right before my period and i too thought it was sugar related all this time....any thoughts??? thanks so much.....
34, Happily Married
Mom to a 5 yr. old son, and 2 yr. old daughter!
[This message has been edited by healthy2b (edited 01-26-2003).]
I have been diagnosed with temporal lobe epilepsy. I have experienced some of the same feelings as you and can definitely understand the frustrations you are feeling. I cannot stand any kind of busy situation. Christmas shopping and crowded stores absolutely freak me out. I also have "confusional spells" where I just zone out. I don't convulse as with most seizures, it's just like the light is on and nobody's home! I also have no short term memory at all. I am only 36 years old. A little too early for senility, but it is alot like that. I don't know if any of this is helping you, but I was kind of hoping some of this sounded familiar to you. I have been on Topamax for quite a while. I started taking it for migraine prevention, but after the diagnosis of the seizures, the dosage was increased. I have no advice one way or another regarding childbearing because I can't have children because of another issue which is for another message board!! I hope I was able to help in some way. If not, it felt good to get it off my chest anyway! I hope you are able to get the help you need. All my best...Karla
Hi - My 8 year old daughter has the same symptoms you list. She has TLE in the left temporal lobe. Went to 2 neurologists to start with. They said she could outgrow it. Went to epileptologist who took one look at same MRI and said she had a tumor. They are doing all necessary tests to see if she can have surgery to remove it. I will be sending records to Johns Hopkins for second opinion. They do feel surgery could cure her seizures. Her seizures run with the full moon and my cycle. Wonder if her hormones are getting ready for puberty? Her seizures come in clusters up to 30 per day. She is on Keppra - just upped her dosage as so far it has helped only to relieve some of the weird stuff that was going on in her tummy (rumbling), did not stop her seizures, neither did Ativan or diastat. Changing her diet helped more than anything. When you say you feel it is sugar related. Please explain. My daughter used to ear a LOT of fruit and drink a LOT of fruit juice and carrot juice. Also, she loved to have a little chocolate every day. When these items were eliminated, her seizures dropped from clusters once a week to once a month. Have her eating meat, low carb veggies and drinking only water, no choc, no caffeine and no chemicals. Before she was diagnosed, I thought she just had stomach problems. Her abdominal area hurt all the time. I started feeding her the above diet in very small portions once per hour. Gradually, the stomach pain diminished to almost no complaints. She has a very high threshold of pain, so don't really know if it still hurts at all. Hope this helps. Please let me know about your sugar thoughts. thanks, lazoo
Not to make light of it, but now that I am in the reply box I forget some of the questions...my short term memory stinks and too much at once cant be remembered!
Anyway, Karla~I never quite felt like that, it just was like a feeling and I would say to myself "no way" and just let it happen, first this intense incredible nausea would overwhelm me and at the same time my left arm goes numb and then these thoughts, recalled memories, deja vu feeling...at the same time I am totally aware of my surroundings, they have happened while driving and it's like two parts of me, one is having the "seizure" and the other is telling myself to stay calm and let it happen and then it lasts only about 1-2 minutes, several times and then usually by midday they would be gone..this time though it was 2 days..it only happened about 4-5 times a year.
Lazoo~I for awhile thought it was sugar related or smoking too much..I used to drink alot of soda and stay up late, smoking too many cigarettes, I used to love orange juice. Then I started realizing what I thought was a pattern and it was always around my period time and I thought it was sugar related. When I mentioned it to my doctor he was sending me for the 8 hour glucose test but I blew it off..not proud of that, but career, kids, life etc. I just thought I could ignore it. I still eat/drink plenty of sweets, just never at night before bed. I am afraid. I really dont know if there was a pattern or not, except for the period. Except one time I had an "episode" was in 2000 when I was pregnant and it happened while driving to work and I drove straight to the ER. They said it was nothing, or dizziness..it is so frustrating to try and explain the symptoms and they don't know what you are talking about. So, if I was pregnant, that is not period related. I am so confused about all of this but have promised my husband we will go to Jackson Memorial Hospital in Miami for a second opinion before I start the meds. Unfortunately in 1997 both his parents passed away from brain cancer and it was a horrible ordeal for us so the mere mention of tegretol or dilantin or anything related brings up a ton of emotions....it's hard. He is just worried and I am scared and don't like medicine. We will see, and I will see what the second opinion brings. What noone can really answer is, what happens if you do nothing. I still don't know if it can turn into a grand mal seizure? I am still doing research and trying to figure this all out! Thanks so much and I wish you both good luck too!
healthy2b - Thanks for your reply. Both of your husband's parents had brain cancer at the same time? That sounds incredibly unusual. Did they relate it to anything - cell phone usage, etc? My daughter also drank a lot of citrus juices. There is a theory called kindling effect. My daughter's seizures have gotten worse over time. She went 6 month's on no meds as she had a severe reaction to the first drug they tried and I was extremely fearful of the meds at that point and really angry that her first doc wouldn't listen to me and sent her home from the hospital when she could barely walk and was in severe pain even on pain killers. I have listened to many stories on here from people who have partials like yours and her's and they do seem to turn into complex partials after a few years so do feel there is some basis to this kindling effect, especially since my daughter's seizures have increased in number though they do not come as frequently as they used to. She was diagnosed when she went into status for 3+ hours. What scares me is that the seizures are always capable of spreading, so if you are having these driving you are putting yourself, your family and innocent bystanders at risk. Your children need their mommy. There was a woman who posted on here several months ago. Her husband was also having partials while driving. She posted again the next day to report that he was killed in a car accident - at least he didn't hit anyone else. Please take care of yourself. Keep me posted. lazoo
Thanks for your input. I am still trying to put all of the pieces of the puzzle together. It is so frustrating, but it does help to know that there are others out there that are in a similar boat to mine. Best of luck..Karla
Karla and Lazoo,
Thanks again for your replies...yes, my husbands parents both had brain cancer at the same time, but sorry I did leave out some details. They both had lung cancer with metastisis to the brain. So, we are all too familiar with the entire cancer process as well as brain cancer. Hey, I could really freak you out and tell you that my father, the love of my life and hero was diagnosed with skin cancer that metastisised to the liver and 26 days later HE died, right in the midst of my husbands parents traumas....but that's a story for another board! Iam not making light but if we didn't keep our sense of humor, our marriage never would have survived what we went through..
Anyway, my doctor said I can still drive? It's not full blown epilepsy. I have to see. I am going for a second opinion in Miami in Feb. Tomorrow is my EEG and MRI. So, I will be anxious to see what that brings. I had a few "episodes" today and for the life of me dont see any pattern of what could have brought them on, except once again, my period is due. That always happens. We shall see. I am sorry for what you go through Karla and for your daughter Lazoo. Hopefully if people keep talking on here and other formats, one days a better treatment will be found or something...GOOD LUCK!!!!!
I was so glad to read your messages! This past November, I was sent to a neurologist after having problems with my right arm and leg. After an MRI, the doctor saidI was so glad to read your messages! This past November, I was sent to a neurologist after having problems with my right arm and leg. After an MRI, the doctor said everything was fine, but he suspected I was having seizures in the left side of my brain and put me on dilantin - which has helped. After reading up on seizures (temporal lobe seizures in particular), I found I had several other possible symptoms...and some are similar to several you all have mentioned. Seven years ago, I had a fainting/sort of out of body episode. I have had several since. They happen maybe once or twice a year and only in the mornings. I become very lightheaded, cold-but sweating, see spots, and, if I don't lie down, I actually black out for a few seconds. During these, I feel strange, hard to explain, out of body-like? We have never figured out the cause of this - course, never told doctor either...didn't seem need to. I would be fine afterwards. Have you had any changes in smell? I read that temporal lobe seizures can effect your senses. Several times a year since high school (started about 24 years ago), my sense of smell seems to pick up only a certain odor. I can only smell this one smell for about 30 minutes. Some years it happened quite often, others not often at all. Can't describe the smell...just that it is the same every time. I know when I smell that odor, I won't be able to smell anything else until it is gone. I also have periods where I KNOW I've seen what is happening...de' javue...but I'm positive I've lived that scene before! Like living a memory. Should I tell any or all of this to my neurologist? Any of this sound familiar?
[This message has been edited by texangel (edited 03-15-2003).]
[This message has been edited by texangel (edited 03-16-2003).]
As far as having children, depending on medication this is still possible. Your seizures happening prior to your period is common with women due to the hormonal changes (estrogen, ADH (anti-diuretic hormone). There is Diamox (water pill) or Lorezpam that you could take in conjunction with your medication around your cycle - this is trial and error; you'll also have to play around and find out the proper timing. If you're on the pill, that may also enhance your seizures. Also, if you are on the pill please note that seizure medications may interfere with contraception.
As far as turning into a grand mal seizure, all I know is if you've been diagnosed with complex partial epilepsy then yes, then can start as a "absence mal" (??) seizure which could stem into a grand mal (today's jargon is "tonic clonic" seizure.
As far as the brain cancer with your inlaws, we can't predict what will or will not happen with any medication. But if you have epilepsy and are not taking any meds, you could be playing russian roulette with yourself and/or family members when driving the car. Be careful and goodluck.
[This message has been edited by giupset (edited 03-18-2003).]
I also have the same exact type of epilepsy. I feel the same way and I have some news that might help you before the seizures get anymore serious. First of all, you mentioned that the seizures are temporal lobe and second, you said that you have them usually around the time of your period. Most neurologists don't know this but there is a definite link between hormones and seizures. I am currently seeing a doctor who researches this at Harvard and he has given me information that none of the 10 other neurologist that I have seen knew anything about. A few days before your period starts, your progesterone levels will drop. Your brain has a sensitivity to this and that is what causes the seizures. I suggest that you start a natural progesterone therapy treatment. This will ensure that your body always has enough progesterone and you won't have anymore seizures. I have tried every anti seizure medication on the market and nothing works. For this type of epilepsy, you need Natural Progesterone. It apparently dissolves into the body better that the synthetic stuff and it may even normalize your cycle to ensure that you are ovulating each month. Good luck!
HelloKathy - Has your doctor at Harvard ever mentioned anything about the full moon? My daughter used to have her seizures with the full moon. Now that she has started Keppra, they seem to be the week before the full moon. But, then again, the moon may also have an impact on the timing of our female cycles. My daughter is only 8 (pre-puberty) and I have tried so hard to find some other connection as to why she has seizures only around that time of the month - which coincides with my monthly cycle. Since the med doesn't seem to completely eliminate her seizures I would love to find something that could rid her of these painful episodes she must bear. Thanks for any help.
Hi, I know your daughter is only 8 but she still has hormones. Have her hormone levels tested. I would recommend a good endocrinologist who can work closely with your neurologist. They can do the hormone tests-- usually they do a few tests on different days of the month to test whether the hormone levels have changed. If there is a dramatic change in hormone levels from one test to the next and this causes your daughter to have seizures then this could be the cause. It's worth looking into. Good luck!
HelloKathy - She's been diagnosed with a brain tumor -so I know that is the cause. However, since the seizures are triggered usually 2 days a month, back-to-back days, I do wonder if the hormones are doing it. Thanks for letting me know about getting her hormones tested. Wouldn't you think the epileptologists would think to do that??
I have a question about this. I probably have temporal lobe epilepsy, but I'm still in denial and I'm waiting for a second opinion. I'm wondering, is it possible to just have auras and not have epilepsy or migraines? Or is the aura itself a seizure? I've had what I believe are auras, including the foul smell that I can't describe, but I know I haven't blacked out, shaken, smacked my lips, spoken weird, or anything like that. Because you are all "in the know" and I have to wait another week before I see a doctor, I was wondering what your opinions are and what facts you know about this. Thanks.