Epilepsy symptoms and conditions

my 4 year old daughter suddenly went in a coma.she has one change in her life that was using singulair.MRI was normal but EEG was abnormal.İn our family history there is no epilepsy.we stop using it and now all the things are ok.Today we are going to have EEG again.I wonder how will be the results.Reading all this made me shock.We were nearly loosing our baby.

I am on 300mgs of topamax a day for epilepsy, and my side effects are the flat tasting carbonated beverages. But the worst side effects is the feeling in the bottoms of my feet. They feel as if my sox are all bunched up and stuffed between my toes, and knotted up under the balls of my feet. It is a miserable feeling. I get the tingling feelings as well. My wife and I love hiking and I a try to stay in shape by doing 4 miles a day on my treadmill. I am 60 years old. I have to really push myself mentally. I hate this feeling. I don't mind the flat tasted, as I can do without the carbonation anyway, but the feet stuff has got to go.

I have been on Lamictal now for 10 months, and I mostly love it.

But my IQ went down about 20 points. The first few months were very bad--I could hardly complete a sentence without forgetting one or two words. My short-term memory was scary bad--almost like blackouts where I wouldn't even remember events when reminded.

Those things have abated somewhat, but I am still having to adjust to a lower ability to think. I must make lists, I must repeat instructions and directions. Perhaps this is more about slowing down what was a hyperactive brain, but it is a side-effect that is hard to accept.

I am noticing a new side effect, though. I drop things all the time. I recently dropped a book I was reading--how does that happen?

Has anyone noticed this dropping, or any other clumsiness like this?

No, I am not a drug rep,I am simply just being honest.Not everyone has a terrible experience from this drug. I am sorry that so many of you have had so many bad reactions,just like any medication it may not be for everyone,but it does work for some.

Hi, my name is Hannah and I am a senior in college. At the age of 19, I was diagnosed with epilepsy. I was a sophmore in college at the time, had a job, and was a completely HEALTHY girl. I have been living with the disease for two year now, and my doctors still can't come up with the cause for my seizures. Recently my sister called me to ask if I had received the gardasil shot, because on CNN talk radio that people were starting to think that the garasil shot might be linked to paralysis,seizures, and even death. I immediately called my OBGYN to ask the dates in which I had received my shots. My first dose was given on Oct.17, 2006. I had my first set of seizures on Nov. 24, 2006. WOW...I was in shock. I feel like I now have an answer for the cause of my illness. I talked to my Neurologist about this and he said we will have to wait until more research is done. I am convinced that Gardasil was the reason for my epilepsy. I am so sad to think that other girls are going in to receive a vaccine that is suppose to help their lives, and instead they could have crippling side effects that never go away. I can no longer drive, I had to choose between school and a job, and now I have to plan my day around taking my medicine. All because a drug company wanted to make some money before their completely researched their product.

Our daughter is only 7 months old . She has idiopathic epilepsy local and generalized tonic clonic seizures her doctor has just changed her medication to trileptal. Does anyone else have an infant on this drug?

I have been on Paxil off and on now for about 5 years.... the current length of treatment for the past 1 1/2 years. I need to be on it ( or something for that matter ) for my panic disorder. I am a 36 year old nurse/ manager and some days was almost debilitated by panic attacks. Depression was part of it, but not nearly as much as panic. I must say, that I have been experiencing memory loss now for about a year.... I thought maybe it was due to overwork/ stress...which I do understand it COULD be. However, I find it interesting that I am seeing so many more people with memory loss than I imagined. Is it due to stress in this type of people's lives, or is it in fact, the drug Paxil?
Keep in mind this is an SSRI ( Serotonin Reuptake Inhibitor ) ~~ even though there is no solid evidence (YET!) this is a side effect of the drug, I would bet my license on the fact that that it is!
I have tried time and time again to wean myself off of Paxil.. ( with and without my Dr's advice )--- I did succeed for a few years to be without the medicine, however being on a slew of other meds in the interim did not help as much for the panic as does the Paxil. Paxil, honestly, scares the hell out of me!
Besides the "numb emotions", memory loss, sexual appetite decrease, yawning, lack of sleep, etc... the side effects of coming off of it are worse! As I read earlier, it IS addictive, indeed! The brain gets used to the drug being there ( as with any addiction ), and the "surges" of dizziness, sweats, and out-of-body-like experiences I experience coming off of the drug are excruciatingly harder to bare than the depression itself. Those above symptoms of withdrawal are just that....withdrawal!
Once your body is "allowed" to reuptake serotonin (as it is supposed to), this is when those symptoms raise their head...sometimes for weeks or months until they subside.
I would welcome anyone with help on this matter---is there another Drug out there that can help with anxiety/depression symptoms, and not cause the plethora of side effects we have all discussed here?
Diane

Hi I've been on topamax for 4 years . Had all the side effects...weight loss,tingling in hands and feet,no memory and speech problems! I was taking 600mgs a day! I take it for epilepsy! I was on the highest dose. my doc then weened me from top. to zonegran 600mgs. It's very similar to topamax. For me it is not helping me as much as the topamax. I think it's a great drug!!!! I did not loose hair, no constipation, no rapid heartbeat for me! I am going back on it . Yes sometimes I would get in a hostel mood and can't spell shit , but for me it's all GOOD !

Think long and hard BEFORE you take this medication. I was prescribed a psychotropic cocktail by an irresponsible doctor and was on 200 mg of Lamictal a day ... I am not bipolar ... was part of depression treatment. Like a fool, I continued to take it. It took away my ability to think, my motivation ... it robbed me of my life for nearly two years UNTIL I saw an article on the BBC website that literally saved my life. I am now medication free and happier than I've been in years!
There are NO long term studies out there for Lamictal yet ... you are playing with fire if you are taking it for anything other than epilepsy and even then it's sad, but has to be taken to control the seizures.

I had a few of ,what I now know, to be side effects of TOPAMAX. I asked the doctor for help in getting rid of them & he changed me from CARBAMEZAPINE (for my EPILEPSY) to LAMOTRIGINE. This was like pouring petrol onto a fire to try put it out (!!!) as one weakens TOPAMAX & the other STRENGTHENS it. I went from a few mild problems to being tired out, forgetting the name of a town I lived for 2 years, shaky hand, eczema, spots, sinusitis, throat infection, vivid dreams & before fits seeing bed buds crawling all over the bed & big lumps growing inside me. After fits ,whilst still in a daze, walking round falling everywhere!!

I got all those problems but the higher the dosage the more attacks i had.Another neurologist think that i just have pseudoseizures-paranoia attacks.Anyways the doctor screwed me up,he gave me 5 years ago something different and my seizures started daily than switched me to lamictal.I must say that sometimes i have or HAD electricity in my left hand all the time and once a women touched me and got stunned lol.anyways lamictal is bad,i didn't have any side effects like loosing hair but i did have A LOT of head hecks.I must share something with you,when i read epilepsy.com it seems that my seizures called myclonics in the end they are not but they similar in effects.Myclonics its seizures that happens only in the morning.Heres the catch for me,i figured out that if i won't close my eyes the first hour after i got up and went to the sun outside than i didn't have seizures.Its not a real solution so i decided to raise the lamictal from 175 which was ok for me to 200-250 like the good doctor said,just made me worse.Now i started dropping it by 25 mill each week and i must say i feel better only a little tired after 5 years that my body got used to it.Anyway if any of you have myclonics than don't close your eyes.BTW i have AURA-feeling before the seizure but luckily for me after a second if i open my eyes nothing will happen although i don't always take notice of it.In midway it would happen if i seat in front of computer and will lose attention if someone will call me or whatever but its a mill-sec seizure,barely noticible if at all and i never get "disconnected" from reality!!!
the ONLY thing which is bad for me is that except that im sick now my blood pressure is huge-140/82 and pulse 106 which is being like that for couple of days but i will get trough that.Since i lowered my dosage my midway seizures stopped,now im on 100.

P.S=Check yourself with the neurologist with a different one preheps.IF you can describe the whole seizure it means you don't dispatch from earth which mean it might be psydo seizures which are psychotic and not epileptic,the most important thing is that if someone takes lamictal or any anti apileptic drug even tho he doesn't have real seizures the medicine can do this.I got screwed and now i try to get over it,the doctor trowed me on woods with tablets after having a first seizure WHICH IS WRONG because you sepused to get tablets only after 3 attacks and after describing seizures and doing eeg tests to make sure that you DO have the problem.

Anyways remember what i said about the closing eyes in the morning part,if you close your eyes and feel weird keep them open at least those that have them after they wake up,that was a solution for me and it can help you to...MY doctor said everyone like me but i think he is laying,the other neurologist said my doctor was wrong probably about the seizures,i think i have both but i do know that believing and saying that you don't have anything WILL help you and lower your seizures,after speaking with the doctor i actually started to believe i don't have anything and walla i have almost NADA,today i had zero!!!! :D

OF course don't lower dosage without first consulting with someone expert,but since i know i can control basically every seizure i have and i know what to do to avoid it i let my self start dropping dozes!!!

GOOD LUCK my friends believe in yourself and if you want some personal info leave your msn i will add you and try to answer you the best i could,i was researching my self trying to figure out the core of the problem for 5 years but after 6 months knocking my head in the pipe when i washed my face i learned what i should avoid to minimize the chance!!!Try that

I have had so many shots of
Corticosteroids/NSAIDS/Steroids:

Triamcinolone Acetonide, Kenalog, Depo-Mardol, Lidocaine, Marvaine, Toradol, Epinephrine, Bextra, Xylocaine, Isovue.......on and on and now I do not walk hardly anymore.

I am married, no sex whatsoever! I stayed away from my husband for 3 years almost, living at my apartment. I just moved out by Eviction March 2, 2008. I did not pay rent for one year. I applied for disability since 1995. Won ALJ decision September 2006. I appealed the case being opened back to 1995. I wanted it go go back futher. Just appealed it again in 2008.

Okay, I am a simpleton out here needing a HERO to Take A Stand and Advocate for me.

I do not live with my husband. I live at his mother's home so that he comes and takes cares of us at the same time. She is 90 now. Can you imagine this? I have been reduced to a cripple.

I am a prisoner laid to rest by the BIG DRUG COMPANIES MISLEADING ME, IN NOT KNOWING ABOUT THE DISEASES THAT WOULD ATTACK ME IN THE ONLY LIFE THAT I HAVE.

I wonder if my hip bones have collasped. I have terrible bone pain.

I waddle like a duck, side to side with extreme pain until I freeze up and fall, but mostly, I live with a cane at my side when going out and about.

I now need a wheelchair.

From 1980's, 1990's and now all the way to 2008. I have all medicals.

It was not until 2003-2004 that my life took a turn for the worse.

Hips pain, arms pain, shoulders pain, pain in the Thorasic area to the tail bone area, right groin pain/pubic area pain/gentials, stomach sores/cut out, pain on the scalp, calves feel hard in side/stiff at all times, hamstrings are short,open sores have been on my face, arms and neck lasting for 4-6 mths, low back pain....all of me has been injected with the above crap.

I was doing quite well in life until 2004 when this Orthopedic doctor had shot my left shoulder 3 times.

After this June 2004 event above, and by September 2004 I had walking problems, blamed only on Fibromyalgia, DX 1989.

They took one blood test for Polyrheumatica.

I was fed 20 something meds in 2004.

By 2005 I was devestated in life, health and even wanting to be alive. For one full year I lived on the pot, using Lidocaine up the butt 3-4 times a day for the pain.

Now, looking back at this part, no wonder I had extreme skin blisters, hives, rashes, extreme sweating....this Lidocaine for rectum pain was harming me and no one took me off of it. I finally had my pharmacy tell me this was so wrong to be using 134.00 a month for over one year for pain. I stopped!!!! he seemed to say that I was being harmed.

Suddenly, at my clinic, all of my primary doctors began to do trigger point injections weekly, monthly and for 4 years for my Fibromyalgia comlaint. DX in 1989.

Many NSAIDS for one year, 2003-2004.

In 2003 I had a new denture and a few teeth extracted so that I smiled great when got married April 2003.

By August 2003 I was off the State HMO, had housing city of salem voucher for 5 years at my apartment and was planning to move out and be at my husband's home, but...by September 2003 I was already in some medical exams, new meds and was being normal to a point.

By late 2003 to mid-2004 I was feeling strange about my health. I felt as if I was being sucked dry of any fluids, weird to say, but it felt as if...hard to explain.

I was dizzy, vertigo, some balance problems and like itching, sweating and extreme fatigue. I felt like i was melting. My muscles felt like jello. I had no ability to stay upward on my spine.

I did complain to my dentist and doctors that I was feeling numb on my face and gums by may 2003.

After 2 years, leaving room for a possible lawsuit on the dentist/OS, I filed, had one deposition and my lawyer walked.

I had laughing gas for teeth extractions/numbing shots.

I thought that GAS/SHOTS was to be blamed, maybe the tools they used, or the water and I worked this case to the bitter end, sad to say, that a Lawyer Walked On Me.

By 2004 I did not know what hit me with my health issues..dentists/new meds/new marriage/new doctors involved.

I was in a drug stupor, taking almost 30 drugs from this clinic in 2004.

Prescribed and the samples of Vioxx, Mobic, Celebrex and Bextra.

I had so many Toradol shots to my spine and hips at this clinic and thought they had crippled me.

This doctor humiliated me.

Told me that I was a nut.

I now needed long term counseling with all of the body ailments they all told me. My primary doctor told me many times that NONE OF THE SPECIALIST NEEDED OR WANTED TO SEE ME FOR ANYTHING.

Nothing was hardly affecting me when I got married April 2003. I was a knock out!

The Gastro doctor had me on his 3 drugs also, including that daily Lidocaine up my butt. He did the endoscopy and colonscopy, bloodwork and he said I had Atrophic Mucosa.

He was in direct conflict with my Neurologist who did his own work and he claimed that I was Gluten sensitive, a Celiac now. He gave B12 shots and Folic Acid on top of all the other crap that I was taking.

The Hospital did a spinal tap and may tests.

The pain specialist did his epidurals 2 times.

I have had every NSAID they prescribed me.

I had sleeping pills.

I had anti-depressants.

I had Vicodin to Percacets and then they tried to get me on Methadone. One week on that crap was all.

I notice that Depo-Medrol, Marcaine, Lidocaine was mostly used thru out my life.

The pain specialist above that I used in 2006, also shot me with the epidurals 2 times before 2006, and the O.H.S.U. also shot me with all the above when they DX me with Fibromyalgia 1989.

Then many Toradol and Kenalog shots.

I live with daily diarrhea since 2005-2008.

My legs are always red every day with any walking, sleeping, sitting, balance is off, waddling gait.

My feet pain is as if I walk on glass or rocks....sharp pain now for 4 months.

Arachnoiditis fits me well. I have spoken with the doctor/expert that can test me.

I have been searching since early 2004.

I have no way to know who or what to blame.

I even thought that the MRI's Contrast Agents harmed me starting from the past to now.

I left the clinic that stole my life from me and now have a new doctor at Kaiser Permanente.

I am scared of all doctors now.

I have 4-5 meds right now.

Not one doctor or specialist will DX me. I have a thought below...

I fought the medical community WORLD WIDE back in 2002-2003 with the President Dr. Richard Willner, of Retired Association of Physcians and Surgeons. My two other sisters were in this heated debate.

I was told to expect danger at any time after this online 30 page cruel attack by the doctors on my wrongful death of my mother by her doctors/nursing home/hospital.

I proved this case.

The lawyer in Portland, Or. Judy Snyder told me I did extremely well proving this death was murder...but the Medical Consultant who did the summary of this death was hushed up!!! Later on, after another summary by Medical Consultant, she told me that we would be lucky to get $10,000 for a Nusiance Claim. I tried to get one Lawyer before the statues ran, but no luck. I heard that the Elder Abuse Statues ran for 7 years and to try for that. Oh well, I tried.

Joanie K.

I've been on Lamictal for 3 years, and it's started to fail. I was on a generally small dose for epilepsy, 100mg twice a day. Well, I started having these twitches that caused a car incident, so I had to go to the doctor to get the dosage increased. Well, I did that, slowly, and I was twitch free. I thought that this was great, I can finally rest easy. Also, for some reason after I increased the dose I was oversleeping. No severe side effects though. But then, just yesterday, I had what we believe to be a full fledged seizure during a shower. I missed my dose by 2 hours the night before, and luckily I was having trouble falling asleep (or perhaps unlucky), and I probably got 5-6 hours that night, which lack of sleep is always a bad thing with epilepsy. So, during my shower I started twitching, bad. I turn the shower off. Then the next thing I'm on the shower floor, and I see blood on the wall, though too dazed to make anything of it. My family hears the bang and comes down and tells me to open the door, but I yell out to wait until I'm dressed. Then I felt horrible. So obviously the dose increase didn't help, and the Emergency room doctor put me on Depakote plus the lamictal until I see a neurologist next week.

I have been on Keppra for over a year now due to high risk of seizures and just a general case of epilepsy and since i've been on it I don't have energy to do much of anything anymore. I'm always tired and sleeping. I used to stay up until midnight or so to go to sleep at night and now i'm going to sleep around 7. My doctor started me on 250mg twice a day and eventually had to increase my dosage up to 1000mg twice a day and I do have to admit, it has almost completely stopped my muscle spasms throughout the day and night and it has also made it where i can be around a strobe light for a while before it starts bothering me. But like always, all medicines work differently on different people.

My son has been on Singulair since the age of 6. He is now 13 years old. He developed seizures 3 weeks ago - temporal lobe aura epilepsy during which he was hearing voices. EEG abnormal, MRI normal. He hasn't started medication for the seizures but I have stopped his Singulair immediately! This was just a hunch - searching the net to see if there is any correlation. I have been to the Pediatrician AND the GP the past 3 weeks and no one said anything. I think a great number of children are on Singulair in SA. Does anyone know about the possibility of this danger?

I am approaching 8 mos on Topamax. I take it for Epilepsy vice Migraines so my situation is less discretionary. Caffine is a definate no-no on Topamax, it makes you feel confused and crappy immediately after you drink / ingest it. That is the first lesson I learned. Drink plenty of water, that helps your kidneys work through the medicine. I take 75 mg in the morning around 7:30 and my heavy med time is around 11:30 (lunchtime) and then 50 mg at night so I am asleep during my evening heavy med time. Topamax is a miracle and has kept me seizure free for 8 mos. Side effects are light, I just plan accordingly. I would never take Topamax if I did not have to. I just take plenty of notes to overcome my high med times / confusion and seem to be doing pretty well. The big one is CUT OUT CAFFINE. Man, caffine will make you feel really bad.

My nephew is 7 and has been on Singulair for probably 4 years. His symptoms developed over time but recently have exploded. He has epilepsy so most of the things that he has experienced has been blamed on that. However, today his doctor took him off singulair and said he believes his symptoms are caused from the drug. He started having head drop seizures, fell out of his desk and cut his face one day. He has also been depressed, had severe anxiety attacks for the past 8 months. Several months ago, he started having such severe nightmares that it is almost impossible to get him to go to bed and go to sleep. Recently he began "seeing dead people" and "monsters" that we trying to kill him even when he was awake. He has also cried many nights with leg cramps and severe stomach pain. I will update this page in two - three weeks to let you know if these problems go away now that we have stopped the singulair.

Hi. I am so sorry to read your story. My 17 year old daughter’s story is similar. She had her second Gardasil vaccination during the end of January 2008. During the month of February and March, she had abdominal problems. Beginning on March 30th, she had seizures. She had a CT of the head, MRI of the brain, EEG, 24 hour EEG and as I type this note, she are in the epilepsy center at Jefferson Hospital in Philadelphia and the doctor just came in to tell me that every test is coming back normal and that my daughter is having “stress” seizures. My daughter has no more stress than any other 17 year old girl does.

I related to the doctor my thoughts pertaining to Gardasil and I feel as though he has dismissed my idea.

I have found some many stories similar to yours and my daughter’s but I believe because Gardasil is so new, nothing is coming out yet about it.

If anyone has any other information, please advise!! We are desperate here in Philadelphia.

Jodi
***

I had severe stomach pains for 2 weeks when I switched to ER. However, I was able to regain control of the epilepsy when the depakote stopped working so well after 15 years.???
I have gained 80 pounds on depakote and ER over the past 20 years but I cannot fairly blame the drug for that. I have also had bouts with depression-like symptoms (never sought help) but again, who is to say that can be blamed on the drug? While I have lost hair, I still have more than many 40-year old men.
When first going on Depakote 20 years ago I slept for days it seemed. I have never felt as though I had the same energy level as before starting the medication but it has been so long and I am so thankful that I can lead a normal life without seizures by using the med.

lamictal controls seizures if you take it at the right time. i am on 200 at night and 200 in the morning plus epilim. sometimes i just sit and cry wen im trying to concentrate on reading books i have to study or trying to remember work i learnt at school which has left my brain. im failing school not matter how hard i try, i study all the time then the next day i have forgotten it. im so young and i havnt even started my future yet and i may have screwed it already. failing exams because i forgot wat i learnt the night before hurts so bad. its hard to say "hey everyone the reason i failed is because lamictal screws my memory" i know thats what it is. i was extremely intelligent before i started taking it, but now im a failure. i guess deep inside i know really im not a failure, but lamictal makes me one. : ( p.s add a constant hand tremor and sudden jerking movements every now and then.

Repeating my post from way down below - IN CASE someone's child with these head drops is looking for someone with similar symptoms.

WELL - Thank God! It is so about time! My son, age 6 now was given a very grim outcome/future by two top pediatric neurologists 2 years ago when he started having not the typical seizures we associate with epilepsy (no epilepsy in our family) - his head would drop forward - like his muscle tone in his neck would collapse for a few seconds and he would literally bang his head on tables (this was when he was 3.5 yrs old) - my husband and I always knew in our heart of hearts it WAS THE SINGULAIR he had been taking for 1 year after he had a bad coughing spell the year before - not formally diagnosed with asthma - but the pediatricians insisted it would only benefit him to continue to take it. When we noticed these head drops and his eyes would at times roll back in a matter of just a second or two and he was the most loving, caring and affectionate child and turned into an aggressive and obsessive compulsive child, who also began to have HALLUCINATIONS at night - he would sit up in bed and be seeing things and scream and cry, WE JUST KNEW IT WAS THE SINGULAIR and we stopped it COLD TURKEY on Oct. 31st 2005 - against the advice of the pediatrician. We took him to a neurologist and we told him about our suspicions about the Singulair he, just like the pediatrician brushed it off, but he had an MRI and an EEG - the MRI came back normal, but the EEG was devastating!!! We were told to get ready and pray a lot - that our little boy would become a vegetable and would require assisted living for the rest of his life. That he had a rare form of seizure disorder for which there was no cure.
We took him then to Duke University Hospital and had him checked by the top pediatric neurologist for a second opinion - he gave him another EEG and the diagnosis from this dr. was even worst - he would probably die an early age due to the severity of his condition and that he would lose all his motor skills and regress to a vegetable. Those were the worst days of our lives. We went back home and put him on anti-seizure medication and prayed A LOT - even strangers added him to their prayer list. Well, the seizures stopped in late January 2006 and just last March of 2007 he had another EEG and it was NORMAL - he was weaned off the anti-seizure medication and is thriving and his a great kindergarten student.
Doctors cannot explain how he was cured - there is just no explanation.
Aside from the faith we have in God's hand in this cure, we just KNOW THAT STOPPING THE SINGULAIR saved him from further damage and probably loss of life.

He is the most affectionate and caring little boy you can imagine and I do want to point out that his speech was affected in our hearts, we know it was the Singulair but in the last year his speech has improved dramatically and he is doing just fine.

My husband and I have been struggling to get awareness about the dangers of Singulair and children but the doctors do not believe us. At our last appointment with the pediatric neurologist, I told him, "one day, you will see that we were right about our suspicion regarding Singulair".

I do want to add that it was just too much coincidence that when he went for his first EEG in Dec. of 2005, there was another little boy in the room next door that his parents suspected Singulair as the culprit too.

If anyone wants to email me and if there is anything I can do to help with my own personal testimony - please email me ****** - I will be glad to share any other information.

LET'S RAISE AWARENESS TOGETHER and stop more damage from occurring. Remember, my son (post is far down) almost became a vegetable and was given a grim prognosis by 2 pediatric neurologists including the top one at Duke. No cure we were told. But we always knew it was Singulair. He was cured and there is no medical explanation. Had he continued to take it he would be the vegetable they had predicted he'd become.

Okay, I just emailed DATELINE NBC - please be sure to submit your children's adverse reactions story to them - here is the email address:
*******

I also tried emailing ABC for PrimeTime and 20/20 but they use regular snail mail for story suggestions - please do your part and mail out your story to them at:

To submit a story idea to one of the ABC News shows listed below, write a single page letter including your name, phone number, and address. Include photocopies of backup information. On the outside of the envelope, write "Story Idea." If a producer is interested in your story, he/she will contact you. Here are the show addresses:

20/20
147 Columbus Avenue
New York, NY 10023

Primetime
147 Columbus Avenue
New York, NY 10023

Together we will do something to help avoid more tragedies

I went ahead and reported our experience online to the FDA:
https://www.accessdata.fda.gov/scripts/medwatch/medwatch_online.cfm

FILE YOUR REPORT - TOO.

My six year old daughter was given this medication for idiopathic generalized epilepsy. As soon as she started on this drug we noticed a complete personality change. She was a completely different person. She seemed to be possessed while on this medication. My daughter is a sweet little girl, and is very good for the most part, but when she started this medication it turned her into a monster. She was on this medication for about 2 months, and was taken off it when we got a second opinion. She has not been on any medications while we explore additional opinions for her condition (which is very unusual - she does not have seizures like most people do). I would not recommend this medication to anyone.

WELL - Thank God! It is so about time! My son, age 6 now was given a very grim outcome/future by two top pediatric neurologists 2 years ago when he started having not the typical seizures we associate with epilepsy (no epilepsy in our family) - his head would drop forward - like his muscle tone in his neck would collapse for a few seconds and he would literally bang his head on tables (this was when he was 3.5 yrs old) - my husband and I always knew in our heart of hearts it WAS THE SINGULAIR he had been taking for 1 year after he had a bad coughing spell the year before - not formally diagnosed with asthma - but the pediatricians insisted it would only benefit him to continue to take it. When we noticed these head drops and his eyes would at times roll back in a matter of just a second or two and he was the most loving, caring and affectionate child and turned into an aggressive and obsessive compulsive child, who also began to have HALLUCINATIONS at night - he would sit up in bed and be seeing things and scream and cry, WE JUST KNEW IT WAS THE SINGULAIR and we stopped it COLD TURKEY on Oct. 31st 2005 - against the advice of the pediatrician. We took him to a neurologist and we told him about our suspicions about the Singulair he, just like the pediatrician brushed it off, but he had an MRI and an EEG - the MRI came back normal, but the EEG was devastating!!! We were told to get ready and pray a lot - that our little boy would become a vegetable and would require assisted living for the rest of his life. That he had a rare form of seizure disorder for which there was no cure.
We took him then to Duke University Hospital and had him checked by the top pediatric neurologist for a second opinion - he gave him another EEG and the diagnosis from this dr. was even worst - he would probably die an early age due to the severity of his condition and that he would lose all his motor skills and regress to a vegetable. Those were the worst days of our lives. We went back home and put him on anti-seizure medication and prayed A LOT - even strangers added him to their prayer list. Well, the seizures stopped in late January 2006 and just last March of 2007 he had another EEG and it was NORMAL - he was weaned off the anti-seizure medication and is thriving and his a great kindergarten student.
Doctors cannot explain how he was cured - there is just no explanation.
Aside from the faith we have in God's hand in this cure, we just KNOW THAT STOPPING THE SINGULAIR saved him from further damage and probably loss of life.

He is the most affectionate and caring little boy you can imagine and I do want to point out that his speech was affected in our hearts, we know it was the Singulair but in the last year his speech has improved dramatically and he is doing just fine.

My husband and I have been struggling to get awareness about the dangers of Singulair and children but the doctors do not believe us. At our last appointment with the pediatric neurologist, I told him, "one day, you will see that we were right about our suspicion regarding Singulair".

I do want to add that it was just too much coincidence that when he went for his first EEG in Dec. of 2005, there was another little boy in the room next door that his parents suspected Singulair as the culprit too.

If anyone wants to email me and if there is anything I can do to help with my own personal testimony - please email me ****** - I will be glad to share any other information.

I have had temporal lobe epilepsy/ partial seizure disorder since I was thirteen. I was put on Lamictal, serzone, inderal, tegretol and a host of other things for atypical migraine disorder (which we thought I had until I was diagnosed as having partial seizure) and NOTHING got rid of my seizures until I tried KEPPRA. I call it my miracle pill. I take 500mgs 2x day and the only thing I experience is lethargy. I take small naps here and there but nothing that really is debilitating. I may have a lower libido and be slightly dry eyed but compared to the benefits for me it's worth it.

I am sitting here in absolute shock. I cannot believe all that i have heard from the wonderful people posting on here.
My son has been talking singular for 2 yrs now. I did take him off in the summer months. He was given this medicine for allergies and bronchial problems he seem to have in the winter. He is 5 and was also diagnosed with epilepsy. He has "absent seizures" and has had a difficult time finding a good combo of meds to treat the seizures. Last summer he seemed to be very good, had no seizures for months and i thought that Sick Kids had found a fix. When winter came around I put him back on singular. I am guessing about a month after i was back on the phone with the doctors telling them that again this epilepsy meds were causing sleeping and anxiety problems. HE has been on 3 diff meds since and still having sleeping, pains, headaches and contently scared of everything. We signed him up for skating lessons, and had to cancel do to the music would cause him to have an all out panic attack. TV commercials that have any type of Bass cause him to walk backwards around the TV so he will not see it. I have been blaming the epilepsy meds all along. I am sooo frustrated, if this is the cause of all our problems i will be so hurt and angry. This medication that we were told is a simple product that a lot of people are on has seemed to be a worse nightmare. I will calling my doctor tomorrow and discussing this.