Accutane And Seizures

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I took roaccutane in 1996 and again in 1997. Each time was for around 6 months. I had a 6 minute tonic clonic seizure in August 2011 and another one in January 2012. I'm wondering whether this is related, although it is a big gap. Has anyone else developed seizures 15 years or so after finishing roaccutane?

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YES....I Hate to Even Admit it..But..I have had several Seizures....Some lasting 15 minutes...It is Like being trapped inside a body that will not work..or even perform the simplest tasks....I could see...and realize..I was drueling...but my right arm was contorted..and my left arm was basically rigid....I believe it is About time..We all find a way to form a network...of people...that can compare notes.....More aptly...than on here..Please contact Me.

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2

I can't say whether or not it caused your seizures, but if you do some searching online on the adverse effects of Accutane and the reports from others that have used it, seizures have been reported by many people and it has been suspected of causing them.

https:/­/­www.medschat.com/­wiki/­Accutane/­

Has your doctor found any cause?

Are you on current treatment for them?

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3

I got my first seizure aprox. 1-2 years after accutane. i have had about 6 seizures in total within the next six years... i am now firmly on depekote, and it seems to keep me seizure free... i am on depekote because after my first seizure they pumped me full of dilantin and i was almost killed due to an unknown allergic reaction.

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4

I finished accutane on Monday and on Friday night I had my first ever tonic-clonic seizure. It was terrifying, and although I told the doctor at the hospital that I had just finished accutane, he dismissed it.

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5

I was on Accutane known as Roaccutane here in Australia for about 12 months when I was 16. I had my first tonic clinic seizure at 21. The major effect for me was hair loss, but after finding this thread it now makes me think that the seizures that I have had since 21 can be attributed to Accutane. The seizures have had a huge impact on my life. I have always wondered why I started having seizures and I think I may have just found the answer.

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6

My son was on roaccutane in 2005 when he was 18. He had his first grand mal this year at 26 and has had another a few months ago when trying to reduce medication (keppra). The seizures were out of the blue and there is no family history - he is a slim, healthy young man. Last night it came to me like a bolt of lightening that perhaps there is a link between the roaccutane and his seizures. The doctors can find no reason for his seizures. He's had lots of MRIs, EEGs, tests and the easy solution is to whack him on medication.

This is the most positive link and plausible explanation I've found so far. Is there research being done or further information that we can obtain?

Is there another way to manage these seizures without medication?

Thanks.

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7

I was on accutane in 1998-1999 for roughly 6-8 months when I was 17-18 yrs old. I had minimal side effects besides some back muscle pain/cramps and a horrible sunburn from a day at the beach with no sunblock, stupid teenager! Acne got better, but of course came back. So... in 2003-2004 during college, I went on the generic version amnesteem. Dosing was shotty as I had concerns about my college style drinking and taking such a harsh drug. Nevertheless, I was taking it off and on for 5-6 months.

Close to the end of my treatment I suffered a blackout/possible seizure? after a long weekend of drinking at a three day music festival. Chaulked it up to excessive everything and recovered a few days after. Never went to the hospital. Now 10 years later post isotretnoin use, I have suffered another unexplained blackout. This time I went to the ER, where the doctor could not conclude what had happened, but could not rule out possible seizure or arrythmia. Seems unlikely but I too am now beginning to question what could be the cause. Also finding alot on links between low vitamin D and the use of these drugs, which I am deficient. Going through series of diagnostics now to determine the nature of my blackout. I will update as Iearn more.

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8

Hi i was wonderin can u go on accutane while bein on elpilespy tablets

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9

I was on Accutane for one month in February 2009, I began to have side effects of hearing loss and pressure in the front of my head so I stopped taking the medication. Seven months later I had my first Grand-mal seizure where I completely lost consciousness, began tensing and seizing up, and was drooling at the mouth. I woke up in the hospital where they told me I had a seizure. I had no family or past history of seizures. When you sign the Accutane waiver to take the medication it mentions that seizures are a possible side effect of taking the medication. I've tried taking the matter to court but because of the waiver it releases the company from being liable from giving any patients who take it a seizure disorder. After 6 years I'm still having trouble with seizures and it's going to effect me for the rest of my life and there's absolutely nothing I can do about it, and no way that I can be compensated for it. Since 2009 I've had 7 Grand-mal seizures and have been switched from Keppra to Topiramate. One acne drug has ruined so many lives.

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10

My 17 year old son was on claravis (generic accutane)for 4 months. Into his last month he had a gran mal seizure and was diagnosed with jme. I know accutane caused this but all the docs dismissed it. This seizure disorder doesn't run on either side of our family. Wish I could go back in time and I would have never put him on this medication. I'll go to my grave knowing accutane played a role in this diagnosis out of the Blue!

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11

SORRY ABOUT MY ENGLISH THIS DRUG IS VERY DANGEROUS ,I USE THAT WITH SUCCESS BEFORE LONG TIME ,AND SIDE EFFECTS FOLLOW FOR EVER ,I SPEND MANY YEARS TO FOUND HOW TO RECOVER MY BODY AFTER THAT
I HOPE CAN HELP YOU

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12

I was on Accutane in 2008-2015 multiple times (high dose in the beginning, but only in very low dose in the last years). I was 19 yrs old at the beginning and had some of the common side effects.

My first grand mal seizure came in summer 2012 out of the blue, followed by two more grand mal seizures within few weeks. So the neurologists diagnosed epilepsy, without a known cause. I had to do MRIs, EEGs and the neurologist put me on Keppra (anticonvulsant). Up to now, one more grand mal seizure followed at the end of 2014. I still take Keppra twice a day.

I had no family or past history of seizures. Also there were no other nameable diseases (besides the acne).

I don't (and probably won't ever) know if Accutane is the cause of my epilepsy. But it's known that isotretinoin can cause convulsions [1] and isotretinoin treatment is associated with changes in brain functioning [2].

[1] en.wikipedia.org/wiki/Isotretinoin
[2] Bremer et al., Functional Brain Imaging Alterations in Acne Patients Treated With Isotretinoin, swissroaccutaneaction.ch/lang1/files/bremner.pdf

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13

the most important is to eliminate from your diet vitamin a ,you must check your liver for sgt

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14

my son is 16 - used reaccutane last year, was prescribed a higher dosage 2months ago, suddenly developed tonic-clonic (grand mal) seizures out of the blue. now using epilim 2x day. why is this not being investigated properly??

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15

My son developed full tonic-clonic seizures while on accutane. I am now convinced it was this drug. Also severe abdominal pain.

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16

My son took accutane when he was 14. After a month on this horrid drug, he became sick, with encephilitis type symptoms, took a few seizures, ended up in a coma for 3 months. In 4 hospitals before CHOP saved his life. He has been living with epilepsy caused by this for 11 years now. No doctors would back us up about accutane being the culprit. I guess they were afraid of the drug company or getting caught up in a controversial legal case, even though we had several doctors agree that accutane could have been the cause. Everyday I suffer the regret and guilt of allowing my son to go on this drug. Other kids were just so evil and mean about my son having acne. We tried everything and expressed our concerns about accutane only to have his dermatologist "poo poo" them, convincing us that accutane was a "wonder drug" and "completely safe". It breaks my heart every time my son says, "I wish I could go back in time and fix this." He just had a recent PET scan and MRI and when the neurologists said with the newer technology they are now able to see the activity in his hippocampus. I almost fell off the chair because I remembered everything I read back then about accutane started with "accutane works in the hippocampus of the brain". Accutane ruined my son's life and I will never forgive myself for allowing some i**** dermatologist to talk us into using it!

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17

Your story sounds just like my husband's...have you found that there are many others with grand mal seizures after accutane? Even the ages are identical...

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18

I started accutane about 3 weeks ago at 20mg! On the 16th day (the day I collect my GCSE results) I had a tonic clonic seizure and my face drooped on one side. Apparently I was unconscious for about 10 minutes. Consequently I was taken to hospital by ambulance and told to stop taking accutane. Prior to the seizure for days I was having the most horrendous headaches and apparently the meds caused pressure on my brain. I am quite traumatised by the whole experience and fear that I will have another one again! I now have a ton more hospital appointments...yay

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19

I am a 26 year old male. I took Sotret which I understood to be in the same family as Accutane for about a year between the ages of 16-17. This was a last resort treatment option for horrible nodular acne. Last year I experienced two (witnessed) grand mal seizures. No prior history of seizures, no prior diagnosis of epilepsy, no familial history of seizures or epilepsy. CT scans, MRI and both EEG's were all normal. My neurologist has not been able to pinpoint a source for these seizures. I am currently taking a full dosage of Keppra (3000 mg) daily to prevent them from occurring again. I have had GI related issues for years now as a lingering side effect of taking Sotret and while I agree that it has been quite an extended period of time since I stopped taking Sotret, it's the only thing that I can think of now that could have been a contributing factor to my recent onset of seizures.

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20

I took accutane in 2000 for acne. In 2007 I began to have seizures. I had no prior history of seizures or family history. CT scans, MRI and EEG's all show clear to this day and I still experience partial seizures and take keppra 1000mg twice daily and lamictal 300mg twice daily

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Re: Sue (# 6) Expand Referenced Message

Almost 10 years later my son is still having focal seizures and the occasional grand mal despite being fully medicated with anti convulsants. Recently he found that going for a run brings on a tonic clonic.
I had hoped that over time his brain would heal itself but the damage seems permanent. I struggle with the fact that we suggested that this horrible drug could be used to treat his Acne. I had reservations at the time but I didn't listen to my gut. Now I feel guilty that I've caused this dreadful outcome that he has to live with for the rest of his life. It's so unfair.

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Re: Robert (# 1) Expand Referenced Message

My son had a seizure around 9 years after finishing a course of accutane. He is now an epileptic and has to take drugs to prevent further seizures. He was 17 when he took the drug. He was perfectly healthy before taking it.
The drug has ruined his life. This drug should be banned.

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Re: nanna shell (# 24) Expand Referenced Message

Hello. Can you tell me how your grandaughter is now. Does she still have to take anti-seizure meds? I woild love to know. Thank you.

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Re: nanna shell (# 24) Expand Referenced Message

How is your granddaughter now? I would love to know.

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Re: lauren (# 18) Expand Referenced Message

Hello. Your story is the same like my son. How are you now? I have a question. Can you write back?

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26

I went through 2 courses of Acutane when I was in my late 20s and early 30s. I had cystic acne from my teens and had gone through all the treatments without any improvement. I was prescribed Acutane very soon after FDA approval for acne. I had my first seizure at 60 years old. I am now 65 and claiming my MEDICARE benefits. As I was considering my medical history, it occurred to me that there might be a connection between my Acutane treatment and my later seizures.

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Re: lauren (# 18) Expand Referenced Message

Have you had anymore seizures? This just happened to my son on Christmas after being on 30 mg for 23 days.

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24

my granddaughter was on accutane for 2 1/2 months and is now suffering muscle twitches and fell (he legs just gave out) she got up and sat in a chair but the twitches remain. They are testing her for Juvenal myoclinic epilespy, is there anyway that this could just go away? How long dies this drug take to get out of your system. She is a very active 17 year old, I pray that this don't effect her life much. she is so smart got 2 years free college, this breaks my heart!! She didn't understand all the consequences of this terrible drug. It needs to be taken off the market!!!

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23

My husband also suffers seizures and took Accutane in his teens
He also tied the two together
I didn't till I found this thread

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22

Same here - I took Accutane in the year 2000. I was in high school. No way I could've been aware enough to think about long term consequences. I had depression, cracked lips, burnt skin and all the other common side effects. Last year, in 2016 I had a grand mal seizure out of nowhere. 12 minutes long and 3 days in the ER. Every diagnostic came back normal. 1 month later I had my second grand mal seizure. Turns out, what I thought was a speech problem from 2013-2016 were small seizures that caused a few seconds of slurred speech. I have no family history and no diagnostic that has come back abnormal. Does anyone know if there are evaluations being done to find out if there is a link between this drug and epilepsy?

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