Vermilion: Years-long intermittent symptoms (notably brain zaps and sound sensitivity), and no explanation seems to fit. Psychiatrist and internal medicine specialist are stumped.

[Vermilion]

Introduction

 

Hey everybody!

 

For several years I have been dealing with intermittent symptoms that seem related to psychiatric medication in some way. These symptoms include brain zaps, auditory sensitivity, hyperarousal, tactile sensitivity, and temperature intolerance. However, these symptoms, which I have meticulously tracked along with other variables, are not easily explained by the pattern of dosing or any other obvious variable. My dosages have been somewhat chaotic over these years, however, with multiple medications entering in and out of usage and their dosages changed. My psychiatrist has been aware of these symptoms and is utterly perplexed. An internal medicine specialist at the hospital similarly does not know how to explain these symptoms. An MRI, CT scan, and extensive blood tests and urine analysis have also come back normal. I wonder if anyone here has experience with cases like mine - people who have had chaotic histories of dosages, and/or a nearly lifelong usage of an SSRI - who have intermittent symptoms like these, many of which are reminiscent of withdrawal symptoms.

 

Biographical information

 

Age: 30

Sex: Male

Diagnosed disorders (mental and non-mental): Asperger's syndrome (now part of autism spectrum disorder)

History of mental health issues: extensive history of anxiety and depression all throughout life, even as early as the first few years of life

Occupation: None for many years

Consumption of other potentially relevant substances:

• Caffeine: approximately 12oz coffee daily. Variations from 0-24oz make no difference in terms of the symptoms this post is concerned with, except for hyperarousal. Although, hyperarousal can occur even with no caffeine consumption.
• Alcohol: usually months without any consumption; occasionally a single day of consumption (1-5 drinks); very rarely several days straight of daily consumption (1-5 drinks daily); no correlation between alcohol consumption and symptoms. No correlation between the days after alcohol consumption and these symptoms.
• Other drugs and supplements: Only melatonin supplements (0.5mg taken daily before sleep, sometimes for many weeks straight.) No correlation between melatonin usage and these symptoms.

 

Psychiatric medication history

 

Long, complicated, varied, and extensive. No, seriously. I have been on sertraline nonstop since I was 8. I was on risperidone for a few years in early childhood. Starting in my late teens, I have been on: sertraline, aripiprazole, escitalopram, quetiapine, buproprion, venlafaxine, methylphenidate, duloxetine, and buspirone. Most of those lasted only a few weeks or months. I mention these only for completeness and precision. The last 5 years has consisted of only four psychiatric drugs (not counting the [literally] one day on buproprion): sertraline/Zoloft (nonstop), duloxetine/Cymbalta (2.5 years), escitalopram/Lexapro (2 months), buspirone/Buspar (11 months).

 

As if that wasn't complex enough, the dosages have been a bit of a roller coaster. I don't have dose data prior to 2016, but I have kept accurate dose data from then on. I will spare you the 75 row spreadsheet (unless someone wants it for some reason) and simply give the same information in graphical form, below. Note that whenever doses were decreased (especially for duloxetine), I tapered for about 2 weeks. I experienced acute withdrawal symptoms whenever decreasing the dose (again, especially with duloxetine), but it resolved within at most a month.

 

 

Symptoms

 

There are five symptoms. They do not always appear together, and not all of them are equally debilitating. I will list them in order of how debilitating they are, as well as a description:

 

• Brain zaps: Probably familiar to most people here, this is an unpleasant but painless sensation lasting perhaps 0.5 seconds that feels like a sudden electric surge in the brain. It feels as if the brain has "jumped". Nothing in particular triggers this symptom; it just happens when it happens. Moving my eyes rapidly to the sides can sometimes trigger this symptom, but not unless I'm otherwise experiencing it that day.
• Heightened auditory startle reflex and hyperacusis:
  • The heightened auditory startle reflex consists of an unpleasant startle reaction to even subtle sounds. For example, someone taking a tissue out of a tissue box nearby would trigger this symptom.
    • The symptom occurs whether or not I know beforehand that the sound is coming.
    • The sensation is similar to a brain zap, but I don't think it's quite exactly the same.
    • Periods when I experience brain zaps are always periods with a heightened auditory startle reflex as well. The reverse is not true, however: I can have periods of heightened auditory startle reflex without brain zaps (with the caveat that the sensation is sort of similar).
    • This symptom is NOT simply sound being perceived louder than it actually is.
    • Loud sounds are NOT necessarily annoying (indeed, loud sounds, especially if they are constant, are not unpleasant at all).
  • Sometimes (but not always) alongside the heightened auditory startle reflex, I experience hyperacusis: discomfort at any sound, loud or soft. Hyperacusis always comes with the heightened auditory startle reflex, but not necessarily the other way around.
• Hyperarousal: a feeling that my body is running on overdrive. It is very similar to if you've had too much caffeine. It consists of overheating, a noticeable heartbeat that can be felt in my chest and ears, sweating, difficulty sleeping.
  • I know what you're thinking: anxiety. NO. I've had anxiety all throughout my life. I know it when I feel it, to an absolute certainty. This is different. This symptom (and all the others, for that matter) have absolutely no correlation with whether I am feeling anxiety.
  • This is not caused by caffeine intake. This symptom occurs regardless of any caffeine intake, although caffeine definitely makes it worse.
  • Objectively, my measured heart rate and measured blood pressure are normal while feeling this symptom.
• Tactile sensitivity: wearing a shirt is intolerably annoying because I'm hypersensitive to the fabric touching my skin. I am not talking about tags on clothing. I either have to take off my shirt or at least stretch the fabric behind my back and lean back into my chair to create a tighter fit, lessening the air-gap between the fabric and my skin.
• Temperature intolerance: this symptom consists of feeling too hot or too cold, despite comfortable room temperature. Typically, the transition between hot and cold takes a few hours. I have a thermometer in my room, and there is no correlation whatsoever between my room's temperature and how hot or cold I feel (given that my room temperature is tightly controlled and never varies beyond about 1 degree Celsius.)

 

Important information about these symptoms:

 

• Episodes of these symptoms tend to cluster into a period of 1-8 weeks before going away entirely for weeks or months, only to come back again later.
• They are not necessarily simultaneous, although they tend to be. With the exception of brain zaps always being accompanied by auditory sensitivity, any of these five symptoms can appear with any others. Sometimes all at once, sometimes only one, but usually 2-4 out of the 5 during any particular episode.
• The temperature intolerance symptom was experienced while on duloxetine/Cymbalta even before these other symptoms became a problem.
• I occasionally experienced tactile sensitivity on various occasions earlier in life, but nothing regular. It's definitely not been normal or common before this suite of symptoms began. If I'm not mistaken, people like myself on the autism spectrum are known to experience this sensitivity.

 

Symptom history

 

Tracking these symptoms is necessarily a little fuzzier than medication dosages. The symptoms vary in severity, and I only became meticulous about tracking these symptoms in the past 12 months. I do have scattered notes of these symptoms going back to to early 2017, however they are reliable in only one direction (i.e., if I wrote down that I had symptoms, I definitely had them; if I didn't write it down, I may or may not have had them.) This is because, understandably, it took me a while to realize how long-term this problem was, and how important it was to start keeping careful track of everything.

 

Here's a graph showing the symptoms. It's the same medication history graph as above, except with my symptoms overlayed in grey. The darker the shade, the more severe and/or numerous the symptoms were in that timeframe. Note that I made sure to be very precise. The distance between dots are months, and symptoms are as precise as a week during the latter part of the graph. I didn't distinguish between types of symptoms in the graph because it would get way too visually busy if I tried to find a way to do that. But if anyone wants the raw data of which symptoms I had at various times, I'm happy to provide a big ugly Excel file for your viewing pleasure.

 

 

Possible explanations, and why nothing seems to fit (based on my intuitions and lay knowledge)

 

• "Dose is too high; these are side effects of the medication." / " Dose is too low; these are signs of inadequate dose."
  • This explanation does not make sense because I have experienced these symptoms on both high doses of sertraline (300mg), low doses (100mg), and doses in between. Furthermore, I have been on sertraline for 22 years without any problem until recently.
• "Protracted withdrawal syndrome" / "Withdrawal symptoms last a long time for you."
  • Then why do these symptoms go away for months at a time before coming back, despite no change in any dosage? Besides, I've had tons of medications and dosage changes come and go over the years, and I've never experienced withdrawal symptoms beyond a couple weeks. A third mystery: these symptoms get worse immediately following a dose increase.
• "It's something in your environment."
  • Please, speculate! I beg of you. I've tracked: caffeine, alcohol, exercise, diet, mood, medication taken with vs without food, medication taken at different times of day, and half-doses taken at two different times of the day. I've also had blood tests. Nothing I've tracked correlates with these symptoms.
  • Also, if it's something unrelated to my medication, I find it odd that the symptoms are the same symptoms that I've gotten in the past from acute withdrawal when lowering doses.

 

By the way, at some point you may have began wondering whether I'm a hypochondriac who's anxious about possible symptoms and starts feeling them when they aren't actually there. I'd wonder the same thing if I were in your position, dear reader. I assure you it not the case. My psychiatrist, who has known me for many years, very much trusts my reporting on this. He has even called the internal medicine specialists at the hospital to specifically assure them that I'm not deceiving myself and am accurate and objective in my self-assessment of symptoms. Furthermore, I have never shown a tendency to obsess over symptoms in any other aspect of my health. If someone in my position were mistaken about these symptoms in such a way, you would expect them to have quite a history of extensive and elaborately tracked "mysterious symptoms" that no one can figure out, or at least frequent doctor visits for every little thing that might indicate a health problem. I go years without seeing doctors (not counting my psychiatrist).

 

What to do from here, and concerns about possible paths

 

In terms of medication, there are logically only a few possibilities. Let's assess them:

 

• Possibility 1: Do nothing. Stay on 100mg and hope it resolves itself.
  • Justification: Perhaps recent years of chaotic changes in medications and dosages are confusing my brain and it's having trouble establishing homeostasis. Perhaps if I just leave it alone at 100mg sertraline for years, it'll gradually fix itself. Or something. I'm a layperson about pharmacology and neurology.
  • Downsides/doubts:
    • Just how long am I supposed to wait? It's been 5 months. What if this is still a problem 5 years from now? 10? What's the limiting principle? How long before I can declare that staying at this dosage clearly can't be the solution?
    • I have a lifelong history of anxiety and mood problems. It may be that 100mg is not enough to help with those. What then?
    • In case the problem is not prolonged withdrawal and the chaos of recent years, staying at 100mg prohibits me from doing additional testing for correlations between dose and symptoms.
• Possibility 2: Decrease dose further to, perhaps, 0mg.
  • Justification: The symptoms get worse immediately after increasing the dose, so perhaps the medication is the problem? Or, perhaps, full withdrawal is the only way out to return my brain to normal.
  • Downsides/doubts:
    • I've been on sertraline my whole life. If it was causing these problem, why only now?
    • It may cause anxiety and mood problems to manifest more severely. Who knows what horrors lay behind getting off this medication completely? I was 7 the last time I was without an SSRI!
    • It may worsen these symptoms even further, perhaps plunging me into years-longer withdrawal (if indeed prolonged withdrawal is the culprit) because I'm yet again changing my medication dose and my brain has to readjust.
• Possibility 3: Increase dose further.
  • Justification: I was on 200mg for years before these symptoms. Maybe my brain is so used to that dose that only that dose will solve these symptoms? Besides, maybe it'll help my anxiety and mood as a bonus.
  • Downsides/doubts:
    • I've been on sub-200mg doses before these symptoms occurred and never had these issues.
    • It may worsen these symptoms even further (and perhaps for longer) because I'm yet again changing my medication dose and my brain has to readjust.
• Possibility 4: Add another medication.
  • Justification: No idea, but it's technically a possibility.
  • Downsides/doubts:
    • Adding another variable to the puzzle probably makes teasing out the culprit more difficult.
    • I've been on 3 other medications throughout this multiyear ordeal and it never seemed to help before.
    • What is the proposed mechanism by which another medication would help?

 

Obviously I would consult with my psychiatrist before doing anything. But that need not stop us from speculating about what might be the best explanation and the best path forward. Thank you for reading this far! I'm desperate for any sort of nugget of a possibility of a solution for this, so please don't hesitate to speculate.

[Onmyway]

Hi Vermilion, 

welcome to SA.

What a well written intro with such clear illustrations and diligent record keeping! 

 

From looking at your graphs it is clear to me that your symptoms follow changes in your dosage either increase or decrease of either of the medications in a windows and waves pattern The Windows and Waves Pattern of Stabilization - Symptoms and self-care - Surviving Antidepressants. Recovery takes some time after those changes and withdrawal symptoms can be serious for a period of time (what we call a wave) and then remit for a while (a window). These alternate and repeat creating what we call "the windows and wave pattern." As time goes on the waves get shorter and not as severe and the windows get longer and you feel more and more normal. This can take months or years in some people. In your case a significant improvement is obvious from the graph though it seems like you are currently in a wave. There is also something known as kindling - that dosage changes sensitize your body to future changes - so while you may have been able to get away with it in early withdrawals, as you repeat various dosage changes/stopping of medications you may become more sensitive in subsequent ones. 

 

You have made quite a large drop in sertraline 5 months ago so your body needs time to adjust to that - I'd suggest that you don't make any changes for a while and slowly you will stabilize and get back to normal. That would mean no dosage changes and no new medications. 

 

After that you can decide to taper if you wish. What is is that sertraline is supposed to help you with right now? 

 

Reading your history I am surprised by the fact that you were prescribed psychiatric drugs so young - these are contraindicated in children in general. I am not even sure how one knows that a toddler has depression. I am not saying that you didn't feel distress, it can't be easy to live with ASD just curious how that decision was made. 

 

Is your psychiatrist familiar with the latest literature in withdrawal? You seem to have a good relationship with him so if he is not, he might be willing to read Tapering of SSRI treatment to mitigate withdrawal symptoms - The Lancet Psychiatry

If you decide to come off of this drug, be sure to taper very slowly. This explains why that is the case. 

Why taper? SERT transporter occupancy studies show importance of gradual change in plasma concentration - Tapering - Surviving Antidepressants

 

Hope this helps and pls take care of yourself. 

OMW

PS. The skin sensitivity sounds awful. I had something similar for a week (I think mine was linked to Herpes Zoster) and could barely tolerate it. 

 

Edited September 5, 2021 by Onmyway

[Vermilion]

25 minutes ago, Onmyway said:

Hi Vermilion, 

welcome to SA.

What a well written intro with such clear illustrations and diligent record keeping! 

 

From looking at your graphs it is clear to me that your symptoms follow changes in your dosage either increase or decrease of either of the medications in a windows and waves pattern The Windows and Waves Pattern of Stabilization - Symptoms and self-care - Surviving Antidepressants. Recovery takes some time after those changes and withdrawal symptoms can be serious for a period of time (what we call a wave) and then remit for a while (a window). As time goes on the waves get shorter and not as severe and the windows get longer and you feel more and more normal. This can take months or years in some people. In your case a significant improvement is obvious from the graph though it seems like you are currently in a wave. 

 

Thanks, that's very interesting. It would certainly explain the patterning. Is this a phenomenon that the literature recognizes, or so far is it fairly limited to anecdotes from people in our situation? One other thing I wonder is why my symptoms become more severe immediately after increasing sertraline. You can't see it on the graph because it only lasted a day or two, but there have been a couple of times where I increased the dose and the symptoms got really bad that day or perhaps the day after. If my symptoms are prolonged withdrawal, wouldn't one intuitively assume that increasing the dose would mitigate those prolonged withdrawal symptoms?

 

Quote

 

You have made quite a large drop in sertraline 5 months ago so your body needs time to adjust to that - I'd suggest that you don't make any changes for a while and slowly you will stabilize and get back to normal. That would mean no dosage changes and no new medications. 

 

After that you can decide to taper if you wish. What is is that sertraline is supposed to help you with right now? 

 

Honestly, I don't know. I've been on sertraline since I was 8, so it's hard to know what it's doing. It could be holding back crippling depression and anxiety for all I know. I don't experience any adverse effects from sertraline, which is why I've never bothered getting off of it. Given that I experience no adverse effects from it, is there nonetheless a compelling reason to get off of it that I should consider?

 

Quote

 

Reading your history I am surprised by the fact that you were prescribed psychiatric drugs so young - these are contraindicated in children in general. I am not even sure how one knows that a toddler has depression. I am not saying that you didn't feel distress, it can't be easy to live with ASD just curious how that decision was made. 

 

I was an anxious wreck before sertraline at age 8. I was having panic attacks at the prospect of having to go to school, for example. I recall having suicidal ideation around that time, too, although that may have been a couple years afterwards. I'm told there were a lot of problems even before age 5 that were strangely reminiscent of depression, which was surprising to my mom.

 

Sertraline also apparently made a massive difference in my mood, even at that young age. I was just a totally different person, in a good way.

 

Thanks again for your response!

[Onmyway]

10 hours ago, Vermilion said:

 

Thanks, that's very interesting. It would certainly explain the patterning. Is this a phenomenon that the literature recognizes, or so far is it fairly limited to anecdotes from people in our situation? One other thing I wonder is why my symptoms become more severe immediately after increasing sertraline. You can't see it on the graph because it only lasted a day or two, but there have been a couple of times where I increased the dose and the symptoms got really bad that day or perhaps the day after. If my symptoms are prolonged withdrawal, wouldn't one intuitively assume that increasing the dose would mitigate those prolonged withdrawal symptoms?

 

Hi Vermillion, sorry this will be a quick response as I need to run but let me try to answer. 

 

SSRIs are KNOWN to increase symptoms when started. When I was put on them, the first few weeks were an absolute nightmare but the doctor told me to plough through it which I did. Nobody knows exactly why but they are changing things in the brain and withdrawal and up-dose are both changing things. I haven't heard of brain zaps with up-dosing but it is possible. They are basically causing a dis-balance for a while and the brain needs time to find balance again. The time before the brain finds balance would be when the symptoms arise. 

Up-dosing and reinstatement are expected to lower the symptoms but they don't work always. For example, people who reinstate after a month or so may find that they don't get relief and may be actually worse off. We don't exactly know why that that is the case but it is likely because the WD symptoms are not just the result of lower levels of serotonin but of of various other adjustments that have taken place - changes would impact other neurotransmitters, hormones etc. This is an interesting attempt at an explanation for benzo withdrawal. 

What is happening in your brain? - Symptoms and self-care - Surviving Antidepressants parts of which would apply to SSRI withdrawal. 

 

 

 

10 hours ago, Vermilion said:

 

Honestly, I don't know. I've been on sertraline since I was 8, so it's hard to know what it's doing. It could be holding back crippling depression and anxiety for all I know. I don't experience any adverse effects from sertraline, which is why I've never bothered getting off of it. Given that I experience no adverse effects from it, is there nonetheless a compelling reason to get off of it that I should consider?

 

The literature says that SSRIs are no better than placebo in any clinically significant ways Antidepressants and the Placebo Effect (nih.gov) There are some articles about how they may increase mortality based on observational data. Don't take this as me advocating you going off of your drugs in any way. But if you do, at some point, decide to go off of your drugs, please do it very very slowly to avoid or minimize withdrawal effects.

 

10 hours ago, Vermilion said:

 

I was an anxious wreck before sertraline at age 8. I was having panic attacks at the prospect of having to go to school, for example. I recall having suicidal ideation around that time, too, although that may have been a couple years afterwards. I'm told there were a lot of problems even before age 5 that were strangely reminiscent of depression, which was surprising to my mom.

 

SSRIs create and increase suicides and suicidal ideation in kids and young adults. This is in the literature. There is a Black Box warning from the FDA to that effect.  Hence my surprise at you being prescribed these at such a young age. 

10 hours ago, Vermilion said:

Sertraline also apparently made a massive difference in my mood, even at that young age. I was just a totally different person, in a good way.

 

Thanks again for your response!

 

[Rosetta]

“My dosages have been somewhat chaotic over the years, however, with multiple medications entering in and out of usage and their dosages changed.  My psychiatrist has been aware of these symptoms and is utterly perplexed.”

If I could dispassionately observe the role of psychiatry, I would find it fascinating that psychiatrists are so maddeningly intransigent.  You have summed up, in two sentences, the reason this site exists.  
 

You don’t see the correlation between your actions and your symptoms, and neither does your psychiatrist, because you expect the cause and effect to be more closely related in time and space than they are.  Our bodies compensate for changes in chemistry by regulating hormones.  Scientists know this, but each individual person at any given time has a limited ability to compensate.  When the nervous system fails to adequately compensate depends upon so many different factors that controlling for all variables during a scientific study is impossible.  However, the nervous system continues to try to compensate, and when it succeeds, we have a “window” as Onmyway mentioned.  When it fails, we have a wave.

 

If I were you, I would avoid alcohol entirely for the next year, and settle on 100 mg of sertraline.  Change nothing regarding that dose for several months at least. Take sertraline at the same time every day, adding no new drugs whatsoever.  Caffeine is affecting you, but taking away a coffee habit can have its own consequences, both physically and psychologically.  If you like, you could slowly replace your 12 oz. of coffee with decaf over time.  Switching to decaf helped me a lot.  Caffeine wears off quickly, and it’s not good for people who are experiencing withdrawal symptoms, but it has its own withdrawal issues, of course. 
 

Coming to understand all the information on this site will take a while.  Be gentle and patient with yourself as you learn about prolonged withdrawal syndrome, kindling, the windows and waves pattern of recovery, and the fact that your body is perfectly capable of regaining control of the dysautonomia you are experiencing.  This is true even as you remain on sertraline.  In fact, remaining on that dose is imperative for stabilizing your system.  
 

You can find information on this site easily.  For example, type “survivingantidepressants kindling” into an outside search engine.  You will find the thread regarding that subject and also individual threads of people who discussed the subject.  You can peruse this library of info, too:  https://www.survivingantidepressants.org/forum/8-symptoms-and-self-care/

 

Best of luck,

Rosetta

 

[Darren]

My brain zaps mainly occurred when missing the daily dose. And slight ones every 3/4 weeks for upto a year after completely tapered off.