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Horrible Experience on Accutane - Still Having Side Effects - San Francisco, CA

I started taking Accutane last September to deal...

I started taking Accutane last September to deal with my back acne. Two days into treatment I thought I had a bout of severe food poisoning. I was throwing up every hour all night. I stopped taking Accutane for a week to get better from my “food poisoning” which I no longer believe was food poisoning just my system rejecting the drug.

Anyways I went back on Accutane for the next few months having really dry lips, dry skin, dry hair (no hair loss), and mild headaches (these are the only symptoms I was warned of and they seemed pretty reasonable and normal). I suffered from constipation to the point where I saw some blood after going to the bathroom (was not warned of this by my dermatologist and when I told her about it she didn’t think it could be related). I also had really dry eyes with a sharp pain developing in my left eye. In December my dosage got increased.

A week or two after the dosage increase I started having very vivid dreams and nightmares and waking up drenched in sweat. I started feeling sinus and head pressure similar to a bad sinus infection but I did not have a sinus infection (I was checked by a doctor). I started having darker urine that had a smell it never had before and in January I was rushed to the ER because my heart was pounding, I couldn’t breathe, I had difficulty swallowing, and I couldn’t stop shaking. At the ER I was diagnosed with a panic attack (something I have never had before in my life) and sent home. I had made mention that I was on Accutane but the doctor didn’t say anything about it or that it could be the cause (the doctor didn’t really seem to know what Accutane was).

While at home the body spasms and shaking, nausea, head pressure, and fatigue wouldn’t go away and I assumed it was a bad virus. I stayed home from work all week in bed (not having any energy to get out of bed or appetite to eat). During this week I stopped taking Accutane to let my body recover from this “virus” and it did, well almost (At this point I still didn’t even think Accutane could be the cause of all this, it sounds stupid reading all these symptoms back but I really didn’t). I wasn’t completely better but at least I had some of my strength back and could manage driving to work again. I was feeling better so I went back on the Accutane.

This is where I finally made the connection. Shortly after starting the treatment again I was feeling exactly the same way as I did when I was rushed to the ER in January. I called my dermatologist immediately and she said I should get off Accutane completely (but did not offer any advise of how to treat the symptoms or who to see). I stopped the Accutane treatment immediately.

That was almost six weeks ago. Most of the symptoms have lessened since I stopped the treatment but I am not ok. In the weeks following, I continued to have daily panic attacks, horrible vivid nightmares, fatigue, weakness, and emotional instability. My body has not been able to relax since this all started. I am always in a state of panic where my body is locked up and everything feels tight or I feel weakness and faint. I have to take tranquilizers everywhere I go still because I’m scarred that I will have an attack. Although I’m still having side effects from the Accutane ,the sinus pressure, constipation, dark urine, dry eyes and pain, dry lips have all returned to normal since I’ve stopped taking the Accutane.

I also think it’s important to note that I was diagnosed as having migraines with aura (seeing flashes of light or a blind spot in your line of vision before the pain starts) before I started taking Accutane and the occurrence of auras has increased dramatically (my head doesn’t hurt but I see small flashes of light for about 3-4 seconds once or twice a week). I’m really hoping that these symptoms won’t be permanent.

The worst part is the lack of support to treat these symptoms. My family doctor didn’t know anything about Accutane until I suggested that maybe all these symptoms are from the drug. She said maybe and went on to do a Google search about the drug. My dermatologist was also fairly useless and besides telling me to stop taking the Accutane, has not suggested anything I should do or anyone I should see to help treat these symptoms or find out what happened to me. Sorry for the long post but I hope that anyone considering taking Accutane are aware of the side effects and that they are not as rare as you think.

I’m not against Accutane. I think it could do wonders for people with severe acne but it should not be a drug that’s taken lightly. People need to realize that some of the more severe effects occur more frequently than you think and happen to people that are generally healthy. Personally if I knew all this was going to happen to me I could have lived with the acne. I wish I could just go back to normal and have my life and body back.

Tyler, Thanks for all your suggestions....

Tyler,

Thanks for all your suggestions. I've been doing a lot of research and have been doing actually exactly what you suggested. I started drinking anti oxidant shakes every morning and fasted for 2 days with just the shakes. I'm feeling MUCH better than when I first posted. On days where I don't drink at least 8 glasses of water my body goes into anxiety mode and if I drink ANY alcohol (even if it's a half of glass of beer) I always have an anxiety attack the next day. I've gone to my doctor several times and have had numerous blood samples taken to check for various things and even went to a cardiologist to make sure there is nothing wrong with my heart. Apparently according to all the test results I am perfectly healthy. It seems that the Accutane just gave me some sort of anxiety disorder. I have always been an anxious person (it runs in my family) but I’ve never seen anxiety as an issue in my life before this, since it actually usually motivates me to accomplish things. The anxiety attacks that I get now are crippling and make it hard to do things; I’m also having trouble sleeping which isn’t helping matters.

It has now become predictable as to when I will get the symptoms (usually an hour or so after I eat) and sometimes it's worse than other times. I've tried the elimination diet just to see if it’s food related. So far I think alcohol, dairy, and caffeine make everything worse for me and eating everything else doesn’t seem to affect the outcome much. I’m going to discuss going on an anti anxiety medication for a few weeks to help deal with these symptoms and hopefully I will stabilize back to anxiety levels I was at previously. It’s very frustrating to get these attacks and know it’s an anxiety attack and there’s nothing you can really do. My mind is completely calm when they usually come on and I don’t freak out anymore at the symptoms which makes the attack a lot shorter. Stretching or going for a walk also seems to help (mainly because it takes my mind off how my body is reacting). The anxiety attack symptoms are always the same: starting to feel cold/ chills (but temperature is normal, I’ve check this numerous times), then ringing in the ears starts, then I starting to feel generally ill like I have the flu, weak and dizzy, and then I can feel my heart pounding in my chest. If I can I lie down for an hour and it passes. It’s much worse when I’m at work or out with friends and I can’t lie down anywhere and have to explain to people what’s happening to me. I take Ativan when I can’t deal with the attack any longer and it alleviates the symptoms in about a half hour. Hopefully someone else who is having these symptoms reads this and know that this is also happening to another person and it is just anxiety not some sort of disease.

The worst part is that I was never warned of this by either my doctor or the inside pamphlet. Doctors and most things related to Accutane discuss a history of depression and how it can make you more depressed, but it hardly mentions anxiety or anxiety attacks at all. It’s only after I’ve done the research that I’ve realized that anxiety and depression are both closely related and really anyone taking the drug that is prone to anxiety should be given more of a warning. I’ve never had an issue with depression that lasted for some time or wasn’t related to something happening in my life so when my doctor asked about history with depression I didn’t think to mention anxiety (not that I think the doctor would have been able to make the connection anyways…). If anyone reading this knows any doctors in the Bay Area dealing with anxiety attacks related to Accutane PLEASE let me know. None of my doctors seem to know anything about Accutane or its side effects (Literally they do the same Google search I did at home in front of me in their office…).

Berman skin institute

The main reason I wouldn't recommend this facility is because they have not provided me with any support or advise on how to deal with the longer term Accutane symptoms. After I stopped taking the Accutane I no longer seemed important and at my last visit the doctor was asking me questions that were already in my file. It seemed very impersonal. I feel like I have nowhere to turn to help me deal with the symptoms I am experiencing.

2 out of 5 stars Overall rating
5 out of 5 stars Doctor's bedside manner
4 out of 5 stars Answered my questions
1 out of 5 stars After care follow-up
2 out of 5 stars Time spent with me
4 out of 5 stars Phone or email responsiveness
5 out of 5 stars Staff professionalism & courtesy
5 out of 5 stars Payment process
5 out of 5 stars Wait times
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Hi all, I really feel your pain guys. I used isotretion for over two years. The last year I only used it for the first week of the month. I should have noticed something ealier. Suddenly I was really fragile for winter and the "darkness". I've never had problems with it before. Then, me and my bf broke up in November last year, and I was doing ok until I started on the drugs in the beginning of December. After three days I started trembling on the inside and everything hurt. Basically my entire nervous system broke down. I don't remember much from these days, I should have been admitted. I lost 10 kg in 14 days, and I just sat on my couch staring into the air. Even taking a shower was like climbing a mountain. I woke up the next 4 months with over 120 in pulse, and I didn't get much sleep. When the depression lifted I had terrible anxiety. Also, the pain in my body was brutal at times. When I came home to my parents house at Christmas, still apathic, I just cried and cried because the pain was horrible. It felt like an elephant sitting on my chest at times.

Before you judge me and think that I am some scared little girl, I would like to tell you that I'm an officer, I've served in Afghanistan, I've travelled the world, I've sky dived and I've dived in several oceans.

I've always been unafraid, and now, afraid is the word I'm best described as. They should BAN this drug, because it does horrible horrible things to you.
My family was ready to have me admitted and I must say.. I was ready for it myself..
Fear and death was all I could think about, every second of every minute of the day, and I was scared of my next thought. I could not stand to be alone, because I was so anxious, and my throuth would close in on me. I couldn't watch Homeland on tv, for instance, because I was scared that I would end up like the leading role, crazy and lose my security clearance. - that is probably one of my strongest reasons to not take any anti-depression drugs.

At the end of March (when I was about to give up) I've started taking magnesium with zink and D-vit along with omega-3. On the 1.st of April I suddenly stopped trembling. It was amazing. But I knew I had a long way to go (still have). I started doing kundalini yoga, and meditation. I could not meditate on my own (because my mind would go crazy) so I used entrainment sounds (not selling anything here now, but Lifeflow and Holosync are examples). It has probably saved my life. It's only the last few weeks, five months after starting the meditation that I've started to feel at ease with myself. Also, most of the physical sensations has started to disapear. My thoughts are less frequent and I've developed a more neutral mind to all the thoughts (they don't have as stronge effect on me anymore). It's hard work, but it has paid off. I meditate an hour every day, and do at least 15 min yoga every day. It's a routine now, like brushing my teeth.

My story isn't uniqe, but I'm begging, DO NOT USE THIS DRUG. It can f*** you up in ways that you never thought was possible. If I hadn't worked as hard to get over this as I have, I've would probably be on anti-depressives now. To those who have had similar experiences as me, KEEP ON FIGHTING. Best of luck to you all.

Love, Jizza
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I too have fallen victim to the horrible side effects of this drug. I'm in my late 20s and was on it for 1 month at a 60 mg per day dose. I should have noticed the terrible side effects sooner. After not but 1 week on it I knew something wasn't right with me. I started getting weird dizzy spells, headaches, blurry vision in my right eye, ringing in the ears, felt weak and tired, had difficulty concentrating and strange panic attacks almost daily. But stupid me I thought it would go away and wasn't anything to worry about.

Before I took it I felt perfectly healthy. I ate well, could think clearly, had lots of energy, and never had any anxiety. The doctor said the only real thing to worry about is dry skin and he's never had to take any one off the drug. WHAT A BUNCH OF BULL****!!

I've been off of it for over a month now and still I have all the same side effects only now I have terrible constipation and pain in my stomach. After doing research, I found this drug has been linked to major stomach and colon problems.THIS DRUG IS A F'N NIGHTMARE AND SHOULD BE BANNED!!

No amount of acne is worth the damage caused by this drug. I had to find out the hard way that doctors don't care about you only fattening their pockets and you can't trust anyone but yourself. I was a fool to ever go on this **** in the first place. Especially since my acne was never severe. I can only hope and pray that there's a chance I'll be healthy again.

Best of luck to all you suffering from the side effects:)
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60mg a day!!! you were started on that dose!? that's outrageous. i think at least half the problem here is uninformed medical professionals who aren't given this enough thought. this drug is only supposed to be used for the most severe cases where everything else (topical creams, antibiotics and the pill for women only) has failed so you shouldn't really have been given it. you can read all about the side affects in the leaflet that comes with the drug so it's your own responsibility to read that and make an informed choice.
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Jjbiz that's great that the drug is working for you and you don't have serious side effects. I agree that different people react very differently to different drugs. I do have reactions to many other medications I have taken in the past and my body seems to be sensitive. My issue with taking this drug is that doctor's (usually dermatologists or their assistants) who prescribe this medication do so on a whim (at least where I live) and do not know the full side effects that can occur to some people. Once I brought up Accutane with my regular doctor and she was able to do some research (since at first she knew nothing about it) she was horrified that I was even on it, especially since my acne was not severe. However, I agree that the majority of people do not have this type of reaction while on the drug from the research I have done. Also my severe symptoms did not start until a few months into taking Accutane so please monitor your symptoms to make sure that nothing out of the ordinary is happening to your body. Like I said in my first post:

"I’m not against Accutane. I think it could do wonders for people with severe acne but it should not be a drug that’s taken lightly. People need to realize that some of the more severe effects occur more frequently than you think and happen to people that are generally healthy."

I was never given any warning that anxiety and depression are actually closely linked and doctors frequently use the same medication to treat both. There are no warnings for Accutane about anxiety at all actually although I have read many posts about people experiencing severe anxiety while on the medication (panic attacks). Although I didn't have any issues with depression while on the drug my anxiety issues became completely overbearing and remained so for almost a year after I stopped taking the medication.

Obviously for every person that has a reaction and writes about it online there are tens or hundreds that do just fine and don't write anything, which is why you only generally hear about very positive or negative comments online.

Just as an update, I feel completely fine now. I don't ever have panic attacks any more and my hair has completely grown back. I feel like I'm back to the way I was before I started this medication. On a positive note my acne completely cleared up.

As for you going to the bathroom more at night I would assume this is due to you drinking more water during the day or before bed. If you don't have any other symptoms then that's great. If you notice that your pee is becoming very dark and you are drinking enough water during the day you need to talk to your doctor right away because this could be an indication of kidney damage.

Good luck and I truly hope you get rid of your acne forever :o)
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Ok I'm in England and it took over a year for me to get accutane prescribed to me. I had blood test after blood test, and then had to have a severe operation on my spine, so I had to wait for even longer. Anyway the doctors did not want to prescribe it to anyone because of the side effects and when I eventually got it prescribed to me the doctor went through all of the side effects, and a lot of the side effects are really common say 1 in 10 people. I think here in england they are a lot less likely to prescribe it unless you have severe acne.
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Hi, I've just read your post and I'm from the uk. I'm on roaccutane, I'm on 40 mg at the moment and I've been taking it for over a month. I was wondering if there is any difference between accutane and roaccutane? Also does this drug make you pee a lot more? It seems at night that i have to get up a lot more often! But I think what you said was a bit over the top, as I have said I've been taking it for well over a month and the worse side effect I have is dry lips. I believe that different people react differently to drugs, and you seemed to be really unlucky that your body reacted to it badly. And you said that nobody should take it because it will effect them, I think that is way to extreme! If it was that serious and all the people who took it experienced the serious side effects, doctors WOULD NOT prescribe it. I don't know what the doctors are like where you got them from are like, but here in the uk, the doctors would not even chance it. As I said I think you went a bit over the top, my acne has cleared up quite alot and I'm going onto 50mg in a few weeks. For the first time ever, a drug is actually reducing the acne and I think it is fantastic.
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It's exactly the same drug, Isotretinoin. It has the trade name Accutane in America and Roaccutane else where.
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Hi Tyler, just checking in. Since I last posted my life has drastically changed. I have been off accutane for 7 months, I have been battling with panic attacks. Worst thing is that depression kicked in, and have been battling thoughts of suicide. I left my job in Europe three months ago and have been living with family in the states. I have to go to therapy twice a week and am now taking another drug called celexa. I get frustrated all the time because accutane (only 2.5 months) of taking this, handicapped me. I can't sue because I was prescribed it in a country other than America. My panic attacks have gotten better, but not because I stopped taking accutane - because of therapy. I have been in this place for nine months and beg anyone out there. Do not take this drug. It will effect you. It caused me to go from a strong successful woman to be weak and fragile and unable to handle stress. The only thing that really got me through this time has been to lean on my heavenly father God, and have hope that all these horrible feelings and thoughts will go away.
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Hi Rhhan, I feel your pain, and can relate to all the things you are saying. I've written some in my post, but I would really recommend entrainment sounds. It has saved my life. I feel like I'm half way out of it now, but there is still some bumps to go. Give me a shout out if there is anything you are wondering about, or you could just read my post. -jizza
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Hello everyone.
I was on accutane when I was 16-17 years old ( now I am 26) i had two treatments if I remember correctly they were about a year apart, anyways typical sdide effects like dry lips, eyes bleeding nose once in a while. Just last year in November I had my first panic attack, and I ended up in ER. Since then I have tension headaches, sweat from forehead ( heat flashes) anxious. My doctor had me do all blood and urine tests whicha all came out OK. I have noticed that physical exercise helps me a lot apperently it increases level of soretonin. Also I see that If i drink alcohol I get panic attack next daY.

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I have been to a cardiologist, ENT specialist, my regular doctor, and my dermatologist since this has began. They all ran intensive and expensive tests and have yet to find something. Everyone says it's anxiety or allergies but they offer no cause. If your neurologist does find something PLEASE let me know what it is so I can be tested for the same thing since my doctors are stumped and really don't know what to look for.

The appetite is probably related to the anxiety and it's probably just a toxic shock symptom to the drug. I'm very happy to hear you are off the drug and I hope things will get better for you as they have for me over the last few months. Hang in there! Also a few months after getting off the drug I noticed my hair starting to shed like crazy but this has now slowed. I think it may be related to the anxiety. If this happens to you don't freak out since from everything I've read this is a fairly common symptom and should go away as the panic attacks and anxiety go away.
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As soon as I hear I will report back in hopes of helping you and others.
All my best wishes.
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Thanks so much for your comment back.
I had my second panic attack since my last post to you.
I called my dermatologist and she was cold, unhelpful but not surprised.
She told me to get off the drug and everything will be fine. She offered no help. I then visited my regular doctor who offered more help. She was upset I was taking this drug and wants to look more intensely at why I am having these terrible attacks. I was prescribed avitan and was advised only to take this if I had a serious feeling of panic. My doctor is also going to do extensive blood work and then will send me to a neurologist to see what is going on in my brain. I am a happy person, fearless, and have never expierened such a terrible thing in my life. I really hope no one else takes this drug. If you are sad with clear skin, it's not worth it. I have been off the drug for two days now and have no appetite. I am hoping all the side effects will pass. Best.
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I think it could definitely be the drug and you should get off of it. You should also discuss this with your doctor and dermatologist to see what they think. Some studies suggest that Accutane reduces your levels of serotonin in the brain which is why it has been linked to depression. Depression and anxiety though are closely linked but there's no warning on the Accutane pamphlet about this so some doctors don't even know this. For this reason many of the same drugs used to treat depression are also used to treat anxiety. Ever since I've gotten off the drug the panic attacks have been going away and I am generally feeling better.

Ask your doctor about Ativan or clonazepam, these have helped me tremendously to deal with the symptoms. Basically when you start feeling like you are getting a panic attack you take one of these and it relieves the symptoms within 10 min. If you are having these symptoms frequently then get off the Acuttane and see if the symptoms go away. If they do then you know it's the drug. For me it's taken over 6 months to not have a panic attack almost on a weekly or daily basis but as soon as I stopped taking Accutane I did noticed immediately that I was feeling better. You can also go on a daily anti-anxiety medication to prevent the panic attacks from happening. I haven't because I don't want to be on any more drugs but it's something my doctor recommended.

Also if your acne is not disfiguring you really should not be on this drug. In my research I've found out so many things that, had I known, would have never taken the drug. Did you know it's used for chemotherapy for some head and neck cancers? This is not a light drug. Dermatologist prescribe it way too frequently for non severe cases.

I feel horrible for you because I know what you are going through. I had several panic attacks at work and not only was it embarrassing but also one of the most terrifying experiences I've ever had. Some things that helped me in my recovery:
-drink plenty of water (like more than 8 cups a day)
-avoid foods that have vitamin A in it since Accutane is a vitamin A derivative (interestingly enough vitamin A is only effective at treating skin conditions at toxic levels and some people can handle this fine and others can't)
-hit the gym. Do a 20-30 min session of cardio 4-5 times a week to help your body deal with the anxiety (don't over do it though or push yourself too much because you don't want your body to freak out).
-I also tried to do colon cleanses and elimination diets but they pretty much did nothing.

As time has gone on since this first happened I've learned to recognize the signs that I am going to have a panic attack: feeling cold or shaky, my mind feels hazy like I'm in a fog and can't concentrate, there's a lump in my throat, I start to just feel like I have the flu, sometimes there's numbness or pressure on my face, then my heart starts racing, and I feel like I can't breath. Hopefully you'll start to recognize the symptoms and just tell yourself you are having a panic attack and nothing is really wrong with you. It's helped me to think about all the times this has happened before and nothing has happened to me. Not once did I faint or stop breathing. Just know this is your body over reacting.

Hope this helps...
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Hi there. I just had a very similar experience. I am 27 and was prescribed accutane to get rid of my acne. My job is stressful. A few days ago on my day off I was walking and out of no where, everything in my left side got numb and my chest started beating. I thought I was going to die. I was rushed to the er. I was tested extensively, blood and heart tests. I was okay. I was then diagnosed with "panic attack". Never in my stressful life have I ever had such a horrific thing happen to me. This is the second trip to the er for me since I have been on accutane and I keep getting told that my health is great. I only take 10mg a day for three months now. Could it really be the drug? What should I do? I was told accutane is a high dose of vitamin a. I am so baffled.
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HI Oakland,

All I can say is WOW, I can not even believe what you have gone through. Have you considered seeing an allergist or a naturopath? They might help in finding a way to get the Accutane out of your system. Also you might want to check out the answers to the question in our doctor Q&A, How can I prevent achy joints from Accutane, since achy joints was one of your symptoms. I'm so sorry you are dealing with such problems. Please keep us updated to how everything goes.

Thanks so much for the review and I hope you feel better soon.

-Britt

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