It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Acne Message Board

  • Neurological side effects from accutane??

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 03-17-2006, 01:52 PM   #1
    labsci2's Avatar
    Join Date: Mar 2006
    Location: Milwaukee, Wisconsin
    Posts: 1
    labsci2 HB User
    Neurological side effects from accutane??

    Hi everyone, my name is Kathy. I'm 33 from Wisconsin. Here's a "brief" overview about me. I started taking accutane in 1994 after having tried EVERYTHING prior to that, both prescription and over the counter. I had awful acne, "pizza face" summs it up, with a face full of pimples, red marks, and painful cysts. I had the "usual" side effects while on accutane ("kool-aid" lips, dry eyes, back pain, etc). These went away after I stopped treatment. In the years that followed I had "weird" problems that I never related to the accutane. I had tailbone pain that the DR's couldn't find out the cause of. I blacked out at least 1-2x a year and also had 1-2 severe headaches. Anyways, in Sept. 2001, I dislocated my shoulder. I had an MRI with contrast (gadolidium). About 1 month later I blacked out at work and when I came to I had this awful6-7/10 headache and "drunk buzz" feeling. I couldn't shake it for the next few days, despite taking aspirin or Tylenol. It was at that point that I started my 4+ years of seeing DR's. I started out with the headaches and dizzies. Then it progressed to eye twitching and tremors when reaching for objects. Then my speech would garble so it would sound like I was drunk. My legs then got weak at first, then start to spasm to that I couldn't really stand or walk. My "episodes" noawdays consist of all of the above, lasting from 12-24 hrs up to 5 days or so. They can be triggeres by flashing strobe lights, movement, orgasms, gadolidium, bumping my head, or sometimes nothing at all. My questions are 1) has anyone ever had problems with or know about probs from gadolidium while on or after taking accutane? 2) are there any tests that can be done to "diagnose" problems from accutane? 3) does anyone know about this type of CNS involvement cause from taking accutane?


    Sponsors Lightbulb
    Old 07-06-2010, 11:37 PM   #2
    owenslife's Avatar
    Join Date: May 2007
    Location: marquette
    Posts: 1
    owenslife HB User
    Re: Neurological side effects from accutane??

    I've had symptoms you described. Even with the backing of the Cleveland Clinic, rheumatologists, pain management docs, internal meds, and psychiatrists I still don't have a complete answer. I'll tell you my story though and let you decide what you can take from it.

    It began about 2 years ago. My junior year in college, amidst Cross-Country season training I began a course of Accutane. The side effects were unpleasant for the first few months but it seemed to be working so I pressed on. Now before I go on with this story I want to say (as of so far) Accutane has cured my acne, I haven't had a major pimple since I went off of it so in that sense it was a success I suppose. Anyhow, 2 months in the joint pain started, I was under extreme physical duress training which only heightened it. Each weekly checkup the same story, take some Ibuprofen. Month 4 rolled around and I'd began missing classes due to the pain, and had to stop attending running practices let alone meets, Ibuprofen at all. I'd even sat down with my coach and discussed the possibility that I may not be able to return next year if this somehow continued, but I reassured him that it would only be a temporary absence from running.

    I went into the doctor on the 4 month checkup on the dot, and the same usual questions-
    "Any pain or discomfort?"
    "That’s normal, just take ibuprofen.”

    I knew very well that this was beyond ibuprofen, and decided this may not be worth it. 3 days later I called the physician to terminate treatment one month early due to pain, and a potpourri of other side effects.

    The pain didn't subside after several weeks, and cold weather seemed to intensify it. It was miserable. After a day of walking in the cold between classes I'd be up all night in pain for some reason so awful if felt as if a thousand tiny hammers were relentlessly hitting my knees. It wasn't until weeks after treatment too that I started connecting that there might possibly be a correlation between the Accutane and the random muscle jerks I'd been receiving. If I had to guess on a good day I'd get 3-4 an hour, on a bad day 10-15. They're painless, but enough to break your train of thought.

    I began seeing doctors at the Cleveland clinic almost exactly one year since discontinuing Accutane. In the summer the pain seemed more mild and manageable, however the muscle jerks remained about the same. I began where my dermatologist had recommended I go when I asked what I should do after I terminated treatment- pain management. In retrospect this was a bad move, but I didn't know any better. I'm sure now looking back on it describing the bizarre symptoms he thought I was drug seeking even with my mother there to give a more accurate account.

    The symptoms included
    -Joint pain in knees and ankles, which intensified throughout the day and in cold temperatures.
    - Joint pain in unusual places, such as the sternum during sneezing
    - Muscle spasms (which were noticeably visible that day and got their attention)
    - Burning dry eyes, and mouth, with decreased vision especially at night.
    - And numbness which surfaced later down the line
    - Insomnia due to pain at night, and sever sleep exhaustion as a result
    -Depression (pain maybe and loss of mobility, who knows)

    In any case he looked at me like a moron and sent me to a Rheumatologist name "Dr. Gota" for a follow up. Dr. Gota at Cleveland Clinic did treated me pretty curtly as well again my mom whom was present, and despite not meeting the criteria for a fibromyalgia diagnosis told me that's what she thought it was. I was given Cymalta, and Trazadone for sleep, along with Lyrica I believe by Saeed my pain management doctor who ran with her diagnosis for the subsequent months. To her credit she did run the bare bones Rhumatological labs, which all came back clean, and gave me a thorough exam. She was just an unpleasant woman, with a complete lack of bedside manner. I felt more humiliated in that appointment than any moment in my life I think. It was very disheartening.

    I saw this pain management doctor for about 6 months trying different tinkering. None of the fibromyalgia treatments I responded to however, and the Trazadone made me nauseous, and too sedated the next day to attend my 8am classes the following morning anyhow. In short nothing had improved. I remember on my 2nd or 3rd to last visit I ended up flat out asking him for an Ambien prescription to help me sleep, which I'd had success with when taking in high school for some sleep issue. This old school Indian doctor wasn't having any of that even though he couldn't provide me with any other viable alternative even when I asked. Getting Ambien to try was like pulling teeth. He acknowledged he couldn't offer a better treatment than narcotics could provide at this point, yet was unwilling to proceed to them. At this point I knew this "Dr. Saeed" couldn't provide me any relief and meanwhile I was failing my classes due to the above outlined issues.

    I knew I had to do something, so I terminated treatment with Saeed after he suggest another round of painful knee injections of cortisone, which had previously failed.

    At this point I referred back to my primary care doctor, who was "Dr. John Hickner" of Cleveland clinic who finally referred me to one of the top diagnosticians in the Cleveland clinic "Dr. Hayden"- whom also completed a comprehensive exam and questionnaire. But, after the labs for his hunches came back clean quickly dumped me as a patient, and refused to take any more appointments to see me despite assurances to find out what was wrong with me (no exaggerations here).

    At this point I read on up on Accutane and neurological and musculoskeletal side-effects on more extensively. After weeks of extensive research cases did begin to pop up. Typically they were cause/effect cases- as in patient took Accutane, then developed a rare neurological disorder (for example one is, Stiff-Persons Syndrome) but none really nailed the drug in documentation for causing neurological damage. However, a trend had unfolded. Many times Accutane patients (especially if under extreme physical duress) developed long term side effects according to my readings. I returned to "Dr. Hickner", and showed him some case studies I'd researched. I asked if he'd researched any of this, he replied "No I haven't Owen." I asked him after seeing me for at least 6 months with no prevail he'd learned about this, he had no response, and no answers. I burst into tears at this point, and said that he'd essentially wasted a year of my life. A harsh but true (to some extent) reality that a little research could have been pulled up by any of my previos physicians at Cleveland Clinic.

    From there I immediately terminated my medication (Cymbalta) which I was still taking with no relief, and causing impotence which didn't seem a priority to my pain management doctor. I figured I could do without it. I then read up on treating neurological pain which I clearly had. Medical options I hadn't tried were out there, but one radical answer I turned to was Medicinal use of Marijuana Without approval of the Cleveland Clinic . It wasn't great, but it was better than anything else I'd tried. At first it made the twitches worse, but then it began to ease them, and I could sleep again! I was amazed. I wanted a doctors blessing but at this point I'd found an answer. At the time I did this Marijuana was/is Illegal in Ohio, and I no way condone what I did. In my case- it was a matter of survival, and being out of options.

    I began to run again, as I had a modality of pain control finally. It was going great. But I began to notice numbness in my lower legs, which spread upward as I continued to run. One day I lost coordination however and they collapsed. They began to seize, and spasm like I was running in place. I had no choice but to go to the doctor. He had no real answer, however prescribed Gabapentin 600mg daily, along with Hydrocodone 5-500 every 6 hours for pain every. And told me to follow up with my primary care doctor, "Dr. Hickner." a week later. He had a bizarre term for the spasms in my legs which I can't remember, but he observed in his office.

    I did indeed follow up with doctor Hickner. Again, explained my symptoms and he said "Hmmm.", and asked basically if the medications had helped, which they had. He apologized about not doing his homework and showed me further articles he'd pulled up verifying what I'd found. He said "I'm glad you came back to see me, I'm sorry", I felt in a way vindicated for everything even without a diagnosis. I finally felt like I had someone who believed me, or that was searching for an answer like me. The rest of the appointment discussed exploring untapped treatment options. Mainly continuing the Gabapentin and vicodin, which we ended up increasing both of, and adding a low-dose of valium into the mix to minimize but not eliminate the muscle twitches. We also scheduled a Neurology appointment which I'm still waiting to get into. Exercise is still painful for me and challenging, but the numbness for the most part has dissipated and the twitches are much more infrequent. Most nights I can sleep normally as well.

    All in all this is the cocktail I ended up on and my final, yet informal diagnosis

    Diagnosis:Post Accutane Pain Sydrome

    • Gabapentin 900mg Daily
    • Hydrocodone 5-500 / 1-2 tablets twice daily as needed
    • Valium - 2mg daily as needed
    • .5mg xanax as needed for anxiety (rarley used)
    • Wellbutrin SR 2x150mg daily (for depression which developed throughout the course of this, which is now going away slowly I feel)

    I hope this gives you or anyone who may read this a jumping off point. Primarily read over and search Accutane side effects. Neurological side effects are listed on the warning label for a reason. Secondly don't give up, even at the best hospitals there are doctors who pass presumptions, but there are good ones there too if you give them a chance.

    Last edited by owenslife; 07-07-2010 at 12:23 AM.

    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Question for anyone who took Accutane as a teenager or child? derekm Acne 5 10-27-2011 02:01 PM
    What are the real side effects of accutane? unruhe Acne 46 09-10-2007 06:38 AM
    Accutane Side effects blue_eyes21 Acne 3 02-16-2006 07:28 AM
    Accutane side effects? Dalacined Acne 6 01-30-2006 05:43 PM
    Accutane side affects 1 girl Acne 4 01-06-2006 01:39 PM
    What Accutane Side effects have you had? deltoro Acne 6 05-16-2005 01:57 PM
    When do Accutane Side Effects Start? KarynLR Acne 1 02-21-2005 07:11 PM
    Long-term accutane side effects. LkK2507 Acne 1 12-08-2004 05:16 PM
    When i was on Accutane and played sports/side effects Meet Joe Black Acne 0 06-23-2003 10:15 AM

    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off

    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 11:21 AM.

    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!