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malinablue: writing on behalf of 13-year-old son


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Hello.  I'm desperate for help with my 13-year-old son, Rowan, who is in absolute hell right now with symptoms I believe might be related to withdrawal from Lexapro and lamotrogine or maybe to taking the drugs in the first place.


He's having constant brain sensations and pain that he has difficulty describing - we're not sure if they are brain zaps. (I think they are,  he doesn't.) He says it's like a non-stop twitching in his brain, mostly in the forehead area, and sometimes more to the left side. But they move around. Kind of like a jumping  or "blinking" sensation, but constant. Sometimes they cause sharp pains, other times can be less painful and more annoying. At times, he feels they are connected to eye movement or even to his thinking, like he can make them happen. He feels like any kind of thinking or focusing at all makes them more intense. He can't read without pain or look at the computer without pain. Only when he's doing something mindless - like running - do they lessen in intensity. He feels like he can't think at all and is having short-term memory issues. We had to put him into an online program for school and I have to read to him, but he often can't even focus on what I'm saying. (This is not like him.)


Unlike what we've seen some others describe, he doesn't feel like they're electrical and they're not something that comes and goes. They are continuous, but get more intense at night. He's unable to sleep at all, or even lie down and close his eyes, until his body is so exhausted he can't not sleep. When he wakes up, he's still exhausted and the sensations are still there. The inability to sleep is so bad that I sometimes hear him scream at night in frustration and exhaustion. He's moody and angry when he can't sleep and more and more depressed every day as he believes these will never go away.


He also has photophobia, eye pain, occasional body twitches, neck pain, tinnitus (though he's had this for awhile). His ears pop whenever he opens his mouth wide or yawns. He feels like he can hear sounds in his body louder. For instance, when he turns his neck, he feels he hears it inside his head. 


He had a CT scan - which also looked at his orbital (eye) area - and it was normal. A neurologist told him it was a migraine and prescribed Topamax, which he has started taking at a low dose for about 3 weeks. We don't believe it is a migraine, as it's lasted - non-stop - for nearly 6 weeks now and we can find no description of any type of migraine like this.


He saw an eye doctor to rule out eye issues, and except for dry eyes, his eyes are normal. Though he has a strange symptom there, too, which has gone on for years. No one can explain it. He feels like he can't keep his eyes closed when he tries to sleep. They twitch and jerk open again. It's not that they CAN'T stay closed, tho. Once he does fall asleep, and I check on him, his eyes are closed just fine. But they want to twitch open when he tries to sleep and he literally holds them closed. He tried a mask and the mask didn't work - he still got that twitching because his eyes wanted to open. Only by holding them closed with pressure can he sleep.


He was also having intense back pain and I took him to a chiropractor since I felt it was posture-related - he's grown about 6 inches in just 6 months and he's not adjusted to his new height (he's literally 6' now). 


He was taking 150mg of lamotrogine twice daily and 10mg of Lexapro. He began taking these drugs about 2 years ago. Here's the thing, tho, I could not get him to take them regularly. I would have to remind him every morning and night to take them. I did my best to keep him regular for a long time, but because of other stresses right now, I grew lax in my checking. He'd often miss a dose, sometimes several doses, and then he'd take half a pill of lamotrogine because we were always so afraid of the fatal rash if he missed several days and then took a full dose. Then I realized he'd stopped taking the lexapro for weeks and I told him to take it again and I fear that might have been the start of this.


When this first started, we did not connect it to his medication at all. We feared a brain tumor. I wondered if his constant video-game playing could be at fault or his new gaming monitor. After the CT scan was normal, we wondered (and this is still a possibility) if it could be neurological effects of Lyme Disease. Four years ago, when he was 9, he had a lot of strange symptoms, mostly muscle and joint-related, and we had multiple tests run. His Lyme test came back positive, but for a late infection. We'd never seen the rash and didn't catch it early. He went through two full months of antibiotic treatment and still had symptoms. We were referred to the Johns Hopkins infectious disease center, where they looked at the exact same lab results, and said they didn't think it was Lyme and sent us home with no help (this is why I hate doctors lately). I have an appointment with a Lyme clinic next month for him, but we don't know if that's causing his symptoms yet. He's been prescribed another round of antibiotics in case it is.


But then I went nuts on Google to find help and learned about brain zaps and SSRI discontinuation syndrome. When this started, he was taking the medications, but irregularly. He'd kind of stopped Lexapro for weeks, until I made him start taking it again, and I feel like re-starting it might have kick-started this. His psychiatrist, who really helped my daughter so I trusted him, also believes this is migraine and has no connection to the drugs. He said if the brain zaps were withdrawal-related, then taking Lexapro again would have stopped them immediately. He also said lamotrogine couldn't cause it. Google says otherwise.


I decided we should continue the medications until we figured this out, but my son stopped taking both drugs. He felt the drugs were the cause of this and just stopped. This was before we knew about tapering. I made him go back on both drugs, the lamotrogine at a half-dose for safety, but he rebelled and quit again. He broke down crying, telling me he feels the drugs are killing him. I begin to believe him and I begin to wonder why we ever made him go on them. I feel like his psychiatrist, who previously seemed quite competent, is failing us. He said Rowan's anger is from going off the drugs, and implied we'd need to keep him on these drugs for life. I never realized that was the plan. These drugs are powerful and I even question the diagnosis. He assumed Rowan's depression was bipolar because his father is bipolar, but I've never seen Rowan manic ever, and this anger is new and related to the pain and sleeplessness. I also worry that he discounted Rowan's reporting of itching while on the drugs. Rowan always said they made him itch - and that's a precursor to that potentially-fatal rash - but his doctor said it was unrelated. Now that he really did stop, the itching has stopped. But the real hell has begun.


I don't know what to do at this point. Should we reinstate the Lexapro? We can't reinstate the lamotrogine without tapering up slowly and we're scared to start it again. Should we even be taking the Topamax when we're pretty certain this isn't a migraine and that's a scary drug, too? Rowan is beyond miserable - he's in hell right now - and I'm so stressed by his pain and anger and frustration that I'm in hell, too. Where do we start? His psychiatrist wants to start him on Rispedel instead, but I am scared to death of all these drugs right now, and yet I don't know if Rowan's unusual anger and irritability is from the hell he's experiencing, the withdrawal, or if he really is bipolar. Psychiatrist says this is hyper-mania, but he never was this angry prior to the drugs. He was only depressed and anxious.


On the advice of others with brain zaps, he's taking fish oil, melatonin, vitamin B, and magnesium. Nothing seems to have helped.


Help us if you can!





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  • ChessieCat changed the title to malinablue: writing on behalf of 13-year-old son
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Welcome, malina.


What drugs are Rowan taking now, at what times of day, and what dosages? Does Rowan have these odd sensations in any other part of his body? Are they worse when he moves his eyes?


You said the drugs always made him itch? Which combination of drugs caused this, do you remember? Did he ever take lamotrigine alone?


It is unethical to diagnose and treat a child as bipolar merely on the basis of a (possibly erroneous) diagnosis of a parent. No good psychiatrist would ignore adverse effects such as itching. If I were you, I would find another doctor and tell that psychiatrist you don't like the care your son has been getting.


Any doctor can write prescriptions for these drugs, it doesn't have to be a psychiatrist.


A very low dose, even 0.5mg, of lamotrigine might calm Rowan's system. If this makes him itch, we will know he is allergic to the drug and he can stop it immediately. The easiest way to take this is in liquid form; any doctor can write a prescription for compounded lamotrigine liquid. (Check the price with your pharmacy.)


If the cost of the compounded liquid is prohibitive, lamotrigine is also available by prescription in a 2mg or 5mg pediatric dose, or the 25mg tablet. You can make a homemade liquid with water from that.




Lamictal (lamotrigine) to calm post-discontinuation withdrawal symptoms


Tips for tapering off Lamictal (lamotrigine)




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  • 2 weeks later...

Hi, Malinablue,


I saw your post and just wanted to offer my support - I am another mother trying to help her teenage son wean off psychotropic medication.  I am sending you my virtual support as I have been in a similar situation in the past with my son where he was horribly affected by medication and he was unable to go to school.  In fact, the last decade has been a roller coaster of medical diagnoses mixed in with psychotropic medication (which, like you, I now think was probably not the best treatment for his issues).  Do you have an educational advocate for your son?   


A few things in your post stood out to me. 


You mentioned Topamax.  About 4 years ago my son was prescribed Topamax for headaches by a neurologist at one of this country's leading children's hospitals.  The neurologist assured me that this was a super safe drug with hardly any side effects.  WRONG.  It was an absolute nightmare for my son.  He got pretty much every side effect I've seen documented (which the neurologist brushed aside).  Withdrawal was even worse.  He ended up missing A LOT of school, had episodes of severe irritability and anger, and was put on Buspirone to try and deal with terrible anxiety (another medication move I now regret).  Reading some of the other stories on here, I am now thinking that issues he had a year after coming off the Topamax might have been related to him still suffering withdrawal .


You also mentioned Risperdal.  My son was also on this drug for years.  There are numerous side-effects from this drug and it is another one that can be very difficult to get off of.


I wonder if your son's initial mood issues were caused by Lyme?  I believe my son has dealt with PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) for years.  I believe some of the Lyme late effects are similar to issues seen with PANS. My son is complicated because he also had cancer (and as part of his treatment had chemo and radiation to the brain at a young age) and has been diagnosed with narcolepsy.   That said, despite years of psychotropic meds and the health issues, my son is in a pretty good place right now and I have begun to taper him off Celexa.  He has been completely off Risperdal for 6 months.  He is in a therapeutic high school which helps tremendously.  Things can and will get better for your son and your family (because these issues take a huge toll on the entire family).   

I am a mom trying to help my now 17 year old son taper off his current medications.  June 2017 to April 2018 successfully tapered off 1mg of Risperidone.  Currently DUEL tapering Citalopram and Buspirone.

Current medications: (supplements: omega 3 and magnesium)

citalopram: (starting dose 30 mg) 10/6/18: 27.5 mg 11/3/18: 24.4 mg 11/30/18: 22 mg 12/28/18: 20 mg 1/25/19: 18 mg 2/22/19 16.2 mg 3/22/19 14.6 mg 4/18/19 13.2 mg 5/17/19 12 mg 6/14/19 10.8 mg 7/13/19 9.8 mg 8/9/19 8.8 mg 9/6/19 8 mg 10/4/19 7.2 mg 11/1/19 6.4.mg 11/29/19 5.8 mg 12/27/19 5.2 mg 1/24/20 4.7 mg

buspirone: (starting dose 20 mg - 10 mg am and pm) 2/22/19 18 mg 3/22/19 16.2 mg 4/18/19 14.6 mg 5/17/19 13.2 mg 6/14/19 11.8 mg 7/13/19 10.6 mg 8/9/19 9.6 mg 9/6/19 8.6 mg 10/4/19 7.8 mg 11/1/19 7 mg 11/29/19 6.4. mg  1/27/19 5.8. mg 1/24/20 5.2 mg

Brief rundown of his medication history:

2007 to 2009: citalopram for mood issues from medications for cancer (note: as part of the cancer treatment protocol also sporadicallly received Ativan, morphine, oxycodone, dexamethasone, prednisone and other mood altering medications) /

2010: started back on citalopram for mood issues (in retrospect, suspect PANS, Pediatric Acute-Onset Neuropsychiatric Syndrome) / 2010 to April 2018: 1 mg risperidone added June 2014: attempted fast (Dr. recommended) taper of risperidone (3 week long)  / summer 2014: tried my son on a variety of medications for 1 to 2 day trials - this caused nothing but increased mood issues /  August 2014: reinstated risperidone  August 2014 to November 2014: prescribed Topamax for headaches, maxed at 150 mg I think.  Dr. instructed FAST taper after EVERY documented side effect.  Severe life-altering withdrawal that took months (years?) to resolve. /

January 2015 to present: prescribed buspirone for severe anxiety after rapidly tapering off Topamax  /June 2017 to April 2018: slow 10% reduction taper off 1mg of risperidone (note: decreased interval length toward the end per son's wishes)

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