I stopped Depakote – See Going on Depakote.
This was a nightmare to cold turkey off. I felt crazy, like my brain was going to explode and was on fire. I kept an ice pack on my head for days and listened to meditation tapes. I am not sure how I managed to survive let alone work. The psychiatrist of course thought I needed to absolutely be on a mood stabilizer. I told him NO to antipsychotics and Lamictal because I was terrified of Steven’s Johnsons syndrome especially with Depakote in my system and I didn’t want to sign up for akathisia or TD.
I said I’d try Trileptal which he said was similar to Carbamazepine with less side effects. So I figured I was on that before without terrible problems before the Depakote and I gave it a whirl. After all I’d go mad without a drug – right?
The Trileptal he started at a usual starting dose then brought it up rather quickly. I can’t remember the exact dose. Within two weeks, I was having swallowing difficulty, dysphagia and developed drug induced SIADH (I diagnosed myself again because by this time I was reading FDA package inserts in entirety) which landed me in the ER 2 times and then the ICU with a Na of 123, severe HA and paresthesias. I had a GI workup. All of these side effects were med induced. Time to change psychiatrist
Back on Depakote
My new psychiatrist, at least appreciated my circumstances and recent SE with these meds. The dysphagia was awful and lasted for months. My brain was in shock. I’ll admit I did feel a bit nuts at this time. Who wouldn’t? My new doctor stopped the Trileptal and tried Lithium for about two weeks which didn’t work again it just made me nauseated (not surprising).
We decided to go back on the Depakote after a washout period at a lower dose. We check LFTs, Na, ammonia levels and everything seemed ok but I kept not feeling great although nowhere as bad as I had been. My brain chilled back out.
Flash forward one year, my foot healed, I was racing my mountain bike and hit a root and landed on my right shoulder and fractured it in three places but the bones stayed in place, so a bad fracture but I didn’t need surgery. I forewent the Advil having my prior experience and toughed it out with a sling, grit and ice packs worked with a broken shoulder (only took two shifts off) and now I am back a year and a half later racing my bike and trail running again. I mention this because both of my fractures, I’m not certain would have been as bad without me being on the Depakote. I think it may have weakened my bones, but I am too afraid to get a Dexa Scan.
I also mention this because a CT scan was done at the time of my shoulder fracture and this showed a 6 mm nodule in my lung. I went to a pulmonolgist and they did a more precise scan and determined this to be most consistent with intraparenchymal lymph node. Also of note, is a note in the FDA package insert that rats “a dose related trend for benign pumonary adenomas”. This was particularly weird and frightening.
Tapering This Time
With my current psychiatrist’s support over the period of the last year and a half I have successfully tapered the Depakote. I made this decision because I physically cannot tolerate it any longer. It is making me sick. It’s almost as if my body is rejecting it. While tapering however I began having new symptoms and some of these have resolved, some have not. I have a fullness in my throat at times, restless legs more pervasive since tapering, parasthesias in my feet and asthenia. I also get this cold dysthesia, mostly on the right side of my face and have had some pupil autonomic dysregulation specifically to light upon waking – they don’t accommodate right away.
The newest is my Hga1C was 5.9 a month ago. I’m 5’5″ an athlete and 128 pounds. Not your typical picture of someone with impending diabetes. So I’ll get it rechecked in a bit when my system levels out.
Four months ago I was on 500 mg Depakote daily. I still was having ill effects from the drug – usual Depakote SEs so I weaned down to 250mg. I weaned to the 500 from 1000 over the course of six months. That was the easy taper. It was after 500mg the withdrawal symptoms started.
Oh boy! Crazy stuff. At the time when I did this in May I was running a 25k trail race called the Dirty German and after the race I felt like I just couldn’t recover like normal. I had severe muscle fatigue and lack of power in my legs no matter what I did. Taking time off did not help me recover to my surprise. Then the dysthesia started. Cold on the right side of my face tingling in my scalp burning sensations. Visual disturbance specifically with my pupils and lack of ability to accommodate to light. I had this happen a few times at work in the fluorescent lighting and upon waking up from a nap in bright sunlight. After it happened a few times, I checked my eyes in the mirror and sure enough either one or both pupils were huge and not reacting as they should. It is transient and resolves within about 4 mins but when it first happened I thought I was having a stroke.
These were the major symptoms. They come and go throughout most days. I thought I had MS or some other weird neurological thing going on. So I went to my primary who listened but was unhelpful, then went to a neurologist who confirmed I didn’t have any crazy neurological disease and asked if I really needed the Depakote. He said since you are only taking 125 mg, why don’t you just stop?
I tapered to half for a week and stopped. Things were relatively ok but the symptoms I got before intensified and then I had increased anxiety after about 7-10 days off completely. This was not normal anxiety. It was purely physiologic like my body just was in overload as a result of withdrawal to normal stressors. I knew That it was withdrawal and so was able to focus on my work and continued taking care of my patients. The worst withdrawal effect however is the buzzing in my brain. It’s worse at night when I’m not distracted and comes and goes. The best way I can described it is like a tinnitus but like a buzzing in the brain. It creates sleeplessness.
I’ve been pretty lucky and have had only minor distractions in my sleep but two nights ago had this buzzing and anxiety and could not sleep. I got about two 1/2 hours maybe. I felt like crap the next day. I was signed up for this year’s first Cyclocross race the day after this and was so excited to race and then this happened. I was so angry that I said the hell with it, I’ll race on no sleep. I did and although I could have raced better without going through drug withdrawal and some more sleep, I raced well and the exercise helps my brain level out soooo much.
That night I broke down and took a smidge of Depakote – emptied the 125 capsule to about less than a quarter and took it to try and quiet my head. I definitely had less withdrawal symptoms the following day. Interestingly coffee interacts with Depakote and intensifies my withdrawal symptoms. I never knew why I always felt so different after drinking coffee and pretty darned awful all these years. It’s the Depakote. I’m certain. And I have the documented scientific data to support my experience.
This is where I am now. Back to the drawing board with a slower taper. Unfortunately my doctors – pcp psychiatrist are not really much help. Not unexpected. I was happy to see the ISMP in their 2017 report noting these withdrawal effects are real for many of these drugs. That’s a start.
Overall these symptoms are improving and getting fewer and far in between but I am not sure what permanent damage has been done and what may resolve with time. The asthenia is improved and my exercise tolerance is amazingly better. With each dose drop, emotions, feeling experience is more crisp, less blunted and life affirming. I had to talk myself through each dose drop and realize it’s just withdrawal of the drug and I am not going to go crazy or get manic. I had to remind myself, that I never was actually manic.
I’m saddened by my experience because of the years of suffering I have had to endure when I feel like if I was told long ago a drug free life without going mad was possible, I may have attempted it long ago with support. Also of note, I have no more Raynaud’s, temperature regulation normal now, as is thyroid function, no more butterfly rash, or hair loss. The nausea is gone and my stool is a normal color and urine has never been more yellow. How many other people are out there like me? This is the thought that scares me. To me the key to figuring out mental illness whatever that exactly means, requires looking at a person in entirety which is seldom done these days at least from my personal and professional experience.
Things I’ve found helpful are eating healthy, avoiding or at least consuming minimal amount of other things like coffee herbs whatever that can also affect your brain function. Alcohol is a no no for obvious reasons. My work keeps me very focused and I thoroughly enjoy taking care of patients and practicing pharmacovigilently. It’s quite interesting to see the response of different docs pharmacists patient etc when I get preaching about ADRs SEs less is more etc. I’m careful to cite research always and back it up with pharmacy support. Sometimes it’s positive, sometimes mostly by the psych people interestingly not acknowledged. I see ADRs mostly from drug to drug interactions more rarely as strict ADRs. Every day I see the effects – good and bad of medicines and I feel like I do add value in an effort to change the mainstream mindset of prescribing to one that is more discriminating and critical. Mostly I feel medicines do more harm than good.
The process I believe is akin to healing a broken bone. Stress and remodeling. The system is plastic I think in most cases – it’s just determining how slow to peel things back. It’s an individual process but there are commonalities. I’m almost inclined to think stressing the system and then pulling it back (giving smidge more drug) actually may help.
While my broken foot was healing nearly three years ago, I started to notice a pattern. Each night like clock work at around 7-8 0’clock my foot would get hot, swollen and I would get worse pain. I found a press release by Penn Medicine a few years back talking about research in healing which found that a certain gene expression of messenger RNA (Mtor?) was tied to circadian clock and would turn on/off healing. That was exactly the process I was experiencing. My point is the cycle and the idea of a bone healing as a model for neurotransmitter healing. Stress in bits and pieces are good but the right support needs to occur to if you will and time is key.
Overall, reduced stress, exercise, sleep, dense nutrition with important micronutrients (things like nuts- almonds, walnuts for magnesium selenium etc) greens, liver etc. I’d go so far as to say sleep is monumentally important and if severely disturbed in someone, needs to be supported in some way, even pharmacologically. Exercise also essential. We can’t pharmacologically create what both sleep and exercise do. There’s got to be bench research out there about neuroplasticity specifically in TBI injury cord injury that can be applicable to neurotransmitter brain trauma and healing.
Lastly but so important is the underlying stability of the person being healed. We in most cases are fragile people who have experienced trauma in many ways and psychological preparedness for the stress of this needs to be established before trying to taper. It’s monumentally hard. Internal and external resources are so important in the way of supportive family, friends, work, professionally – psychiatrist, psychologists, therapists.
The good and bad news is no drug fixes this.