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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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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25

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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21

Truth is that 1 in 26 will be diagnosed with epilepsy at some point in their lifetime while another 1 in 10 will have only one seizure during their lifetime. But again, all of these cases are similar: seizures after taking accutane.

I took accutane twice as a teen (1996-1998), and was then diagnosed with epilepsy in 2004. The fact that there was such a long gap in between taking accutane and having my first noticeable seizure, I never thought there was a connection. But now I see so many people have also experienced seizures after taking accutane, either shortly after the drug regimen was completed or several years later.

I once brought this up to a dermatologist. She, too, simply waived it off. But if there are so many cases of seizures and accutane, why isn't there a warning. Even Keppra has the warning of anger issues; maybe accutane should have a warning label too.

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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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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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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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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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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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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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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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13

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

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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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