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Undiagnosed seizures
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Undiagnosed seizures

Dear all,

Could someone please help me??
I´m here because I´m devastated about my child´s symptoms. I took her in almost all doctors in our city but none helped us until today. I am having a very bad time watching my daughter turner each day sicker, and I don´t know what to do anymore. I know you are not doctors to give my child a diagnosis, but I beg you for God´s sake to help us with the information you have.

Alicia´s story:
Let me tell you our story. My name is Terrye and I have a 22 year-old daughter named Alicia. She is an amazing inteligent and child, who grew up without any serious health problem. When she was 12, she started having heavy mood changes and insomnia. I took her to the doctor but I was told to only look for help if she started to have problems at school. Alicia was a brilliant child and never had low grades, only some kind of inability for making friends, but I guess it´s her shy personality. When she was 13/14, she started saying that many times a day she felt as if she was dreaming, as if her body was light and she felt creeps in her arms and legs. She said that during these episodes, she fixed her eye on a place or object and could not move her eyes off, even if she wanted. During these episodes, she could not move either. At this time, she started to feel very very tired during the morning and after lunch, but the insomnia continued (she used to sleep 3, 4 hours/ day). Again, when I took her to a doctor, I was told to not worry about. From 14 to 19, her symptoms continued and other bizarre ones came: She used to say that sometimes she felt as if her stomach was growling in her shoulder, or that she felt that her feet were moving when she moved her hands to write; She used to say that some days she could not see the right colors (she sees everything in a red color, or like a sepia picture); And she used to say that sometimes during classes, she felt as if she was in another place or in another year. During this symptom, she could not move or feel her body and could not return to pay attention on her school chores. Again we went to a doctor and again we were told that these symptoms were nothing but stress. Maybe she was stressed about the idea of being at High school or something. These symptoms continued but never caused any health or social problem: She graduated High School and was accept at Medical School in 2007.
In the spring of 2008, when she was a fresher at Medical School, she was hanging out with friends in her sisterhood when she suddenly felt her legs fade. She tried to straight them up, but she lost her consciousness. Her friends told me that she fell, turned very tough and warm and her lips turned blue. They were taking her to hospital when suddenly she started to shake. When the shaking stopped, she urinated and defecated. She was taken to hospital and doctors said that she had a seizure, she was medicated and sent home. On the following day she had 3 episodes like the one above, and the same was done. She did not tell me about these episodes at that time, and continued at college. On August 2008, she came home and told that she was feeling very tired and weak. Her sleep was not normal: She told that sometimes she missed classes because she slept 12/ 15 hours in a row. And sometimes she spent more than 30 hours without any sleep, but feeling tired. Her attention and memory were descreasing, her humor was changing rapidly, she started having illusions and hallucinations (talk to people that does not exists and could not realize it!) and the teenage symptoms returned stronger then before. On October 2008, while a visit to her father, she had a similar seizure and after that she told her dad that she was not seeing any color (she was almost 1 month without any color vision). I tried to help her at that time, but she denied and returned to university. I could see that she was socially isolated (included from her family), but she was avoiding any kind of help from her family. She told me recently that at that period she was on psychoterapy and going to a psychiatrist that diagnosed her Bipolar.
After the holidays, before returining to university, I took her to a doctor (before knowing that she was on therapy). He asked a CT and a MRI, these exames were normal, so I was told to take her to a psychiatrist. She denied. During 2009, she had no seizure, but was evidentially ill and depressed. She was missing many classes at university, was isolated from her sisterhood sisters and the symptoms above were stronger than ever. During summer 2009, she came home and told that she was on psycotherapy for almst one year and things only were getting worse. She told that she tried two diferent antidepressants and three different antipsychotics and nothing helped her. She was having bad grades, could not concentrate, could not leave home, could not eat, shower and do things on her own. She only felt tired, depressed and had that bizarre symptoms described before. She also started to do things without realizing it: Many times she said she lost her consciouness (as if she slept) started walking without direction and then "woke up" in an unknown area. From August 2009 to June 2010 I had a real journey to recover her, but her psysical, mental and emotional health only seems to get worse; During this period, I took her to two psychiatrists and I was told that she has Schizophrenia, Borderline Personality, Schizoaffective Disorder, Psychotic Depression and even Asperger Syndrome!! During this period she was on intense psychotherapy and ocupational therapy and tried 3 different antipsychotics and 2 different antidepressants. NOTHING CHANGED FOR BETTER, THINGS ONLY TURNED WORSE...
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Last July she had a seizure during a class, and since that day she started having at about 1 seizure/week. Some weeks she had 2 or 3 seizures/week. Her seizures are very strong: She starts to shake and have throes, she has tachycardia and starts to get very warm and red. Then her muscles contract, her body turns very tought, she screams and starts to shake and slobber. At the end of it, her blood pressure is very high, she is tired, confused, she urinates and defecates and her mouth is totally injured. Before having a seizure (some hours, minutes or even days), she says she sees flashs, listen to strange sounds and see the image altered. Since July she also started to feel muscle weakening in her hands and legs, she suddenly wets herself (she urinates or defecates suddenly, without being aware of it), she started to have some mouth and eye shaking and throes in her legs and belly.
Since July I took her to neurologists, she did new CTs and MRIs, EEGs and video-EEGs and EVERYTHING IS NORMAL. There´s no epilepsy. The only abnormality is her blood exam, in which her lymphocites are very high and her thyroid hormons (T4 and Thyroid-stimulating) are altered, but again, any doctors told that the blood exam is something to worry about. Everything shows she is OK, but I can´t live with my daughter fading each day. She is very pale, with very dark circles around her eyes (she does not sleep), gained 33 pounds in one year, can´t sleep but feels very tired, she left university because of her symptoms and seizures. Doctors suggested that her seizures and symptoms are psychological. Are non epileptic attacks like this????? Do people who suffer with this condition have Alicia´s symptoms???? Do people with NEAD have such symptoms since early years??? Is it necessary to have a kind of trauma to have NEAD??
Alicia did not have any trauma or trigger to have these symptoms. She says that her symptoms are organic, they dont come without any kind of situation, memory, etc. Alicia is still on psychotherapy (although her psychologist does not think it´s a psychological illness) and taking antidepressants and anticonvulsivants, but again, things only get worse. I don´t see any improve in her health and I am very afraid to lose my daughter to this condition or to suicide. I know she is thinking a lot about suicide recently and I feel lost for not helping her properly. I just want my baby back. Please, help me.

Terrye, mom of Alicia  
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Hi there.

     Sounds like you have your hands full.I can relait. From 2000 to 2008 I had many of the same symptom as your doughter, regarding the seizers.  I went through all the same test and everything looked normal. But my seizures continued.  I was on high does nurontin, valproic ascid, and a few others. Plus on three antiphyocotic, antidepressants and many more. I wqas finally referd to the head neuro. of St.Micheals hospital in Toronto, ontario.  He could not explain my problem but did state the around 83% of seizures, they do not know what is causing them.  I had doctors tell me that they were sphudo-seizures meaning mental illness. But when they did bllod work on me after a spell, there is a chemical that is released into your blood. I forget ehat it is called but if it high then you had a seizure. Plus they cought many of them on video when I was in Kingston Hospital in the ICU. I was unconssious for 17 days and on a ventilator for that hole time and the seizures still continued.  To this day they still have no idea what caused them.  I have been seizure free for 1.5 years now, but still have a host of medical problems. At this time I am going through gene testing for iron overload and high cortisal levels and really high ferritin levels. I am hoping they figure it out.
I suggest that your daughter continue with her phyco-therpoy but I would try to find a good internalist to have a look at her.  Also take a look at the food your daughter eats. I own and run a Organic veggiy farm so I eat really well, and I think this has helped in a great way.
I do have boarderlind personality disorder, PTSD, and depression. So we have that in common.  So try to find a good DR. who will look at you daughter as a hole and not just one symptom.  Good luck, if you want more info just send me a message I am will go through my medical file to see if therre is anything in there that may help....
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To Aliciasmom: I am sorry that your daughter is going through this. Reading her story, it breaks my heart and I just want to help. I can kind of relate, however I am no where near as severe as Alicia. Maybe you could talk to a Dr about POTS or NCS. That's what I've been diagnosed with and I have many of the same symptoms as Alicia.
You both are in my prayers for sure!
You too flemingetq! =)
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Hi my name is erica I am 26 years old i have been having sezires for the last four years almost eight to ten a week i am going to the bathroom in my pants when it happends i lose consienchness every time i do not wake up right a way and i am very out of it for a few minutes after i do wake up i have not found one doctor that has found them in any test i have them if I don't get sleep if I am stressed out or sick realy when ever they feel like coming I am so tired of going to doctor after doctor and no one ever knows why they always try to say that its me its mentale disorder but if that was the case why don't the meds work or help me in any way what so ever its almost so bad that I want to give up sometimes but I have a great husband and two great kids and one on the way I am now twenty foureeks pregnant and my ob doctor has done more for me in the last six monthes then any other doctor has in four years but it still has not fixed my problem it has slowed my seziers down to five to six a week but not much i spend most of my time in the hospital because i worry about my seziers herting the baby I hope one day they find out what is wrong with me and I hope they do it soon because it seems like the longer they don't know what it is the more things go wrong with me and I am afraid to leave my family behind I am still young and have a lot to do in life stll Thank you for listening
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There are other things that could be causing the seizures.  Diff poisonings, kidney failure, etc.  Also not sleeping will most likely make the seizures worse.  Other causes/triggers, aside from stress, could be from reading her text books, sounds, flashing lights.  The symptoms may be worse during her menstrual cycle as well.  Did the neuro attempt to induce a seizure during the mri?  Ive read that even magnetic fields can induce seizures.  In my opinion drugs should be avoided, particularly b/c her seizures seem to still be undiagnosed other than pyschological.  Many drugs can induce seizures, but there are also drugs used to treat seizures that can be very useful.  Ive had symptoms of seizures for 10-20 yrs now, but much milder.  Visual disturbances, hallucinations, hearing sounds like a tap on my head or music, etc.  I have had bad reactions to Cymbalta, Neurotin, Buspar, and NSAIDS.  The NSAIDS may have been simply an allergic reaction, its up for debate really.  The only things Ive found to help are Zanaflex and Klonopin.  Basically when I felt/saw the aura...I'd take the zanaflex and go straight to bed.  Once the episodes lessened in severity, I switched to 1/2mg of klonopin before bed everynight.  That in addition to a VERY GOOD chiropractic doctor and DO that specialized in soft tissue manipulation/trigger point therapy/and a little cox technique chiro adjustments.  I also have tried adderall (adderrall)...the only problem is when the med wears off Im more prone to the episodes...which is a daily thing, and even after discontinuing it, I have visual problems and other issues for atleast a week.  Plus adderall (adderrall) can cause seizures too I guess.  I would try to slowly take her off meds(if her health isnt threatened) and focus on chirpratic care/massage therapy, with a healthy diet, and a sleep aid if needed...benadryl works good for that if nothing else.  Hope this helps, HMM
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