Sufferer Struggling with Trauma After Severe Medication Reaction

[struggling101]

Hi all.

About 5 months ago I had a severe adverse reaction to a medication. In this reaction I developed a delusion that I was very severely ill with lymphoma, and that I was going to die from it. I became paranoid that medical personnel were ‘out to get me’ and that they didn’t want to treat me. In the last day, after extremely vivid nightmares where I was watching myself die from cancer, I woke up in a cold puddle of sweat that drenched through my mattress. In that moment, I became paralysed with fear and accepted that I was going to die from lymphoma and that no one would save me. I called my parents to help me and they laughed at me. I didn’t realise I had had an adverse reaction until a month or two later, so I really, genuinely thought I had lost my mind.

Since then I haven’t been the same. My psychologist believes I have co-morbid PTSD and health anxiety and I will be trying EMDR. I am really, really struggling.

I have developed a terrible fear of cancer because (according to my therapist) I am trying to avoid feeling the way I felt in that week. I am also having health issues, and am having to go to many of the same places I went to while I was on the medication. This has caused me many painful flashbacks and panic attacks. I don’t go to sleep anymore until I pass out because I am afraid of what the next day will bring. I only feel relief in my sleep - I haven’t had any nightmares since the 2nd month after the reaction.

Has anyone been through anything like this? I feel like I am suffering alone and I feel ashamed that such a ‘minor’ event could mess me up so badly.

I don’t know if this is a symptom of PTSD or not, but I feel like I died that week. I don’t think I’m dead now, but I don’t feel alive.

Can anyone relate? I feel so incredibly alone

 

[Riley Jones]

Hi all.

About 5 months ago I had a severe adverse reaction to a medication. In this reaction I developed a delusion that I was very severely ill with lymphoma, and that I was going to die from it. I became paranoid that medical personnel were ‘out to get me’ and that they didn’t want to treat me. In the last day, after extremely vivid nightmares where I was watching myself die from cancer, I woke up in a cold puddle of sweat that drenched through my mattress. In that moment, I became paralysed with fear and accepted that I was going to die from lymphoma and that no one would save me. I called my parents to help me and they laughed at me. I didn’t realise I had had an adverse reaction until a month or two later, so I really, genuinely thought I had lost my mind.

Since then I haven’t been the same. My psychologist believes I have co-morbid PTSD and health anxiety and I will be trying EMDR. I am really, really struggling.

I have developed a terrible fear of cancer because (according to my therapist) I am trying to avoid feeling the way I felt in that week. I am also having health issues, and am having to go to many of the same places I went to while I was on the medication. This has caused me many painful flashbacks and panic attacks. I don’t go to sleep anymore until I pass out because I am afraid of what the next day will bring. I only feel relief in my sleep - I haven’t had any nightmares since the 2nd month after the reaction.

Has anyone been through anything like this? I feel like I am suffering alone and I feel ashamed that such a ‘minor’ event could mess me up so badly.

I don’t know if this is a symptom of PTSD or not, but I feel like I died that week. I don’t think I’m dead now, but I don’t feel alive.

Can anyone relate? I feel so incredibly alone

Hi there,

I want to extend a warm welcome to you to the myptsd.com community. I’m truly sorry to hear about the difficult experiences you’ve been going through, especially following such a traumatic reaction to medication. It sounds like you've been through a lot, and it’s completely understandable to feel overwhelmed and alone in the midst of all of this.

Your psychologist's assessment of co-morbid PTSD and health anxiety is quite common in situations where traumatic experiences intersect with fears related to health and mortality. The symptoms you're describing, such as flashbacks, panic attacks, and avoidance behaviors, are all consistent with PTSD.

You are not alone in feeling the impact of what you've been through. Many individuals on myptsd.com have faced similar struggles, and they have found solace in sharing their experiences and connecting with others who truly understand. There’s no need to feel ashamed about the impact this event has had on you. Trauma can manifest in various ways, and the severity of the triggering event does not diminish its effects on your mental health.

EMDR therapy can be a valuable tool in processing and healing from traumatic experiences. It’s great that you have that resource available to you. In addition to professional help, connecting with peers who have experienced similar challenges can offer additional support and understanding.

On the myptsd.com forum, you can find specific sections dedicated to topics such as PTSD, health anxiety, and EMDR therapy. These forums can provide a safe space for you to share your story, ask questions, and receive support from others who have walked similar paths.

Remember, reaching out for support and sharing your feelings is a brave and important step in your healing journey. You are not alone in this, and there are people here who care and understand. Please feel free to explore the myptsd.com community, and know that you are welcome here with open arms.

Take care of yourself, and know that healing is possible, even in the midst of the most challenging times. You are stronger than you realize, and there is hope for brighter days ahead.

 

[Friday]

Good News / Bad News… You cannot have PTSD from an adverse reaction to medication.

PTSD Diagnostic Criteria; Exclusions

H. The disturbance is not attributable to the physiological effects of a substance (e.g., medication, alcohol) or another medical condition.

So if your therapist thinks you have PTSD? Either they’re an idiot, who doesn’t even known basic diagnostic criteria of a disorder they’re purporting to diagnose.. or they think you have other trauma you’re not talking about, and the adverse reaction was “just” a stressor.

Adverse medication reactions can have severe & profound effects, delusions & sudden onset phobias VERY common amongst them, but the treatments for medication induced psychosis/delusions/phobias/etc. are wildly different than the treatments for PTSD.

So I would VERY STRONGLY recommend getting a second opinion, &/or clarification of what non-medication related trauma your T thinks caused your PTSD. As being treated for something you don’t have can waste yeeeeeears of your life, attempting to jam a square peg into a round hole.

 

[struggling101]

Good News / Bad News… You cannot have PTSD from an adverse reaction to medication.

PTSD Diagnostic Criteria; Exclusions


So if your therapist thinks you have PTSD? Either they’re an idiot, who doesn’t even known basic diagnostic criteria of a disorder they’re purporting to diagnose.. or they think you have other trauma you’re not talking about, and the adverse reaction was “just” a stressor.

Adverse mediation reactions can have severe & profound effects, delusions & sudden onset phobias VERY common amongst them, but the treatments for medication induced psychosis/delusions/phobias/etc. are wildly different than the treatments for PTSD.

So I would VERY STRONGLY recommend getting a second opinion, &/or clarification of what non-medication related trauma your T thinks caused your PTSD. As being treated for something you don’t have can waste yeeeeeears of your life, attempting to jam a square peg into a round hole.

Hi, she actually explained this to me and I think it makes sense, but I’d love to hear your opinion too.

She said that that clause refers to my current symptoms and not the initial trauma. The way she put it is that I had a perceived threat that was caused by a medication reaction but it fits within the criteria since my current symptoms aren’t attributable to any medication or drugs I’m currently on, and aren’t long term side effects of the medication. I only took the pills I had an adverse reaction to for 7 days, 5 and a bit months ago.

In a way, the medication induced the traumatic event but not the (current) disturbance. Initially she had me down as ‘trauma disorder not otherwise specified’ but I developed flashbacks. From my understanding she isn’t too ‘fussed’ about the exact diagnosis, but she thinks that processing my trauma with EMDR might help reduce a lot of my symptoms, as she thinks a lot of the things I have now are from ‘traumatic beliefs’.

Thanks for your concern, I appreciate you looking out for me :)

This is all very new to me so do let me know if you see anything non-sensical in my post, I’m trying my best to deal with all of this stuff and its not easy, so I appreciate any and all help I can get.

 

[Weemie]

Well, not like it's illegal for you to try PTSD treatments! It may or may not work, since you may or may not have PTSD. EMDR induces neurogenesis by a process of bilateral pathway stimulation, so if you're suffering severely it may be of benefit to try. If it doesn't help, though, you could also try therapies targeted to OCD like Exposure Response Prevention. I have OCD and PTSD and there is a significant deal of overlap with the two disorders, because both have the symptom of intrusion which can very much look like a flashback.

There is even a subtype of OCD called Real Event OCD where your OCD is associated with an actual occurrence in your life. Because of this EMDR may actually assist you even if it is OCD, and research shows it can have a significant impact on OCD symptoms rooted in memories, something like 80%. This is because EMDR 'updates' your declarative recall and thus literally re-processes the memories. There is a lot of evidence to suggest that quite a few presentations/forms of OCD are rooted in traumatic events, and the thing is, those events do not need to meet the criterion A for PTSD. Since it is OCD, it isn't about the event itself but rather how your psyche interpreted it.

One thing I will say is that a lot of people don't believe they have OCD because they don't realize that their behavior is actually compulsive. It doesn't always look like random shit like turning the lights off or washing your hands. My compulsions cause me to talk constantly about it, research about it all the time, and project intrusions when I do basic things like go to a store or pet my cat. (This sounds similar to how you can barely sleep because you're thinking about cancer.) Those aren't PTSD triggers for me, they are OCD triggers.

The clue is in how general they are. But there is some good evidence to support the overlap of OCD and PTSD therapies. Having both disorders it's taken me a few years to really figure out which symptoms come from what. I also do other stuff like I will get an intrusive thought that the lightbulb downstairs may catch on fire so I have to go down and turn it off. I will check my belongings ritualistically before leaving the house even though I remember grabbing the keys, 'in case I forgot.'

My REOCD is also a crit A for PTSD (I have harm OCD that is a result of having actually harmed people), so it gets doubly complicated, lol. But you did mention health anxiety and this is a very common occurrence with OCD, especially fears around stuff like cancer, etc.

I also developed OCD later in life, because prior to psilocybin therapy for PTSD/SZPD I did not experience distress (which is necessary for a diagnosis of most mental illness), and I also had far less typical OCD symptoms like checking things, etc. The distress only developed and my symptoms only became severe after I experienced neurogenesis myself and developed more emotional sensations as a result. So it doesn't need to have been lifelong to be OCD, either.

Regardless of what it may be it is clear there is a real issue impacting you so I would say therapies around both of these disorders would be useful to try if one is not as effective, you have some options and places to look. After all, you don't really need a diagnosis to do the treatment. You may not ever fully know what it is, but if treatment helps that is all that matters.

 

[anthony]

but she thinks that processing my trauma with EMDR might help reduce a lot of my symptoms

That is probably the most important part of all this. Diagnosis IMHO is a crap shoot, at best.

Whilst I see labels serve a purpose to direct treatment based on criteria, on the flipside that very criteria can work against a person who endures the same symptom set. Go figure!

Working at the trauma is the key though...

 

[Jade-]

Hi @struggling101

I can relate to having a severe adverse drug reaction. It was a complete nightmare, just one dose of medication left me with a week of hallucinations, delusions, panic attacks, severe vomiting, paranoia, etc. I can also relate to having PTSD like symptoms afterwards too, for quite awhile. It has been at least 15 years and I still get severe anxiety when having to take any meds, afraid of the side effects.

It was so severe and frightening that I filled out a report to the FDA. In my case though, I already had PTSD and it was a huge stressor. I'm wondering if that could be the case for you also and maybe that's why you're having such a huge struggle with this? Sometimes past traumas can bite us in the ass years later after some kind of trigger or stressor.

I'm glad you're getting help with it, I didn't and wish I had. I hope the EMDR is helpful.

 

[struggling101]

Hi @struggling101

I can relate to having a severe adverse drug reaction. It was a complete nightmare, just one dose of medication left me with a week of hallucinations, delusions, panic attacks, severe vomiting, paranoia, etc. I can also relate to having PTSD like symptoms afterwards too, for quite awhile. It has been at least 15 years and I still get severe anxiety when having to take any meds, afraid of the side effects.

It was so severe and frightening that I filled out a report to the FDA. In my case though, I already had PTSD and it was a huge stressor. I'm wondering if that could be the case for you also and maybe that's why you're having such a huge struggle with this? Sometimes past traumas can bite us in the ass years later after some kind of trigger or stressor.

I'm glad you're getting help with it, I didn't and wish I had. I hope the EMDR is helpful.

Hi! Although it sucks it happened, it’s really nice to meet someone else with a similar experience.

I’ve explored this possibility with my therapist (we did a longitudinal formulation as part of my CBT work) and she says that there are some previous experiences that accentuated my reaction and possibly explain why it became traumatic for me.

According to her it seems that I could be on the spectrum and that my environment growing up wasn’t good for my emotional education (I grew up in Eastern Europe). There was another incident growing up where I had my heart broken (very cringey I know) and had an unhealthy reaction where I disassociated from my emotions because they were too painful. In her opinion, these issues with handling my emotions could have predisposed me to the trauma response I am currently having, but she thinks the trauma itself is the ‘big issue’ right now.

Regarding the actual reaction, I’ve reported mine to the authorities in both my home country and the UK (I’m a student) because it was so bad. I don’t know about you but I was gaslit really heavily by medical professionals both during and after the event, which led me to believe again at some point that I was seriously ill, because if it wasn’t the medication then something was very seriously wrong.

I’m curious about this and I hope it’s not too personal to discuss but one big thing I’ve been struggling with is that I feel really, really unsafe. Permanently.

I’m super vigilant with my body and I make sure to report and track whatever symptoms I have because I still have this feeling in the back of my mind that I’m in danger and that I’m going to die. It’s not as serious as it was while I was on the meds but it’s definitely still there. Can you relate to this? I think this is one of the major reasons I’m having PTSD-like symptoms, as you say.

By the way, my reaction was to a combination of levofloxacin and gentamicin. Our experiences sound similar so I’m curious if it was the same thing.

 

[Jade-]

My doctor at the time tried to convince me I must have had the flu or something, that there was no way I could have that type of reaction from Lexapro. It was Lexapro, I took half the dosage to begin with and was fairly ok, just felt a little strange but then when I took the other half it hit me very hard. I had such bad constant panic attacks for days and I pulled a muscle in my neck from all the shaking I was doing. But the delusions were the worst.

I do have that feeling that I am in danger but that has been there my entire life, before this drug reaction. As I said, I already had PTSD before this, from childhood abuse. But I am pretty sure that is considered a PTSD symptom so that would most likely be a PTSD symptom you are experiencing rather than causing PTSD symptoms. IDK though I'm no expert.

As far as your traumas, I really don't think they're at the level that would cause PTSD. Whatever you have going on I hope you get some relief.

 

[struggling101]

My doctor at the time tried to convince me I must have had the flu or something, that there was no way I could have that type of reaction from Lexapro. It was Lexapro, I took half the dosage to begin with and was fairly ok, just felt a little strange but then when I took the other half it hit me very hard. I had such bad constant panic attacks for days and I pulled a muscle in my neck from all the shaking I was doing. But the delusions were the worst.

I do have that feeling that I am in danger but that has been there my entire life, before this drug reaction. As I said, I already had PTSD before this, from childhood abuse. But I am pretty sure that is considered a PTSD symptom so that would most likely be a PTSD symptom you are experiencing rather than causing PTSD symptoms. IDK though I'm no expert.

As far as your traumas, I really don't think they're at the level that would cause PTSD. Whatever you have going on I hope you get some relief.

Thanks, I don’t think my past ‘trauma’ is all that relevant either to be honest. I am not too sure about the ‘PTSD’ title anymore considering the information people have given in this thread but something is definitely going on. Thanks for the well wishes :)

Honestly, It’s just been really tough and I’m getting desperate for some relief. I have a hard time sharing all of the details of the past couple months which I hear is normal after going through something traumatic so I know that my experience sounds pretty tame but it was really horrible. I just want to be ok again…

 

[Friday]

something is definitely going on.

That’s the important bit.

I know that my experience sounds pretty tame

Not at all. Drug induced delusions/psychosis/phobias/etc. are a HUGE deal, and that’s before the number of things, neurologically, that can be triggered or result from that kind of reaction.

PTSD is a fairly middling/mediocre disorder, on the scale of what can go wrong in someone’s life. The overwhelming majority of people with PTSD walk away, symptom free …with zero treatment… after 6mo. Whilst they still have a lifelong disorder, it’s just as likely to be asymptomatic for the rest of their life as to crop up, again. The next group, stats wise, gets to be asymptotic with treatment/therapy. It’s only the teeny tiny minority of people with PTSD/CPTSD who will be experiencing symptoms long term. To give actual numbers? I’ve read between 93%-96% completely recover reach asymptomatic. That’s a tremendous recovery rate.

In the US, with good insurance, you wouldn’t be sent to psych after drug induced psychosis/phobias/etc. You’d be sent to neurology & work with a cognitive therapist (not psych, brains) or speech pathologist. They run you through a bazillion and one bizarre cognitive/emotional/functional tests to figure out which areas of the brain have been activated, or are experiencing “after shocks”… and it’s all frankly weird. Like the texture of a painted wooden pencil versus plastic mechanical pencil, writing on concrete with chalk, creating wildly different physiological responses… or? None. Just like with TBIs (neuro-cognitive & speech pathologists work with TBI, Seizure, Starvation, & Medication induced XYZ as their bread and butter, but are also flown in to work with torture survivors, trapped by earthquake & other natural disasters, electrical workers & lightning strike survivors, etc., in addition to the trauma therapists and medical doctors… neurologists diagnose & prescribe, but the cognitive therapists & speech pathologists are the ones who actually work with you day in and day out to get you back to being yourself, again).

^^^ I’ve been through this a couple few times, in better countries with badass healthcare, and this one with badass insurance. So, firsthand, I can say how tremendously valuable it is to work with people who see things, like a ring finger twitch, or switching languages for half a second, or sheen of sweat and SEE problems I didn’t know I had, and know exactly how to fix them. And DID fix them.

I have PTSD, from complex trauma. I also have ADHD-C. And? I’ve had my brains scrambled a time or six (TBI, Drugs, Starvation, Electricity, more TBI… whee!). I cannot even begin to count how lucky I was NOT to be sent to psych, but sent to neuro/cog, the first time. So I understood the difference. And I adore trauma therapists! Truly. They’re fantastic at what they do. They’re just 2 very different fields. So? I see both, when I need both. Usually. I’ve also seen people who’ve spent 5/10/20 years under psychiatric care who are spending their first week in neuro… and FINALLY getting results. Because it wasn’t a psychiatric condition to begin with, or it wasn’t ONLY a psychiatric condition. Square peg? Round hole. Or triangle peg, round hole, and problem is labeled “treatment resistant” when it’s not. It’s misdiagnosed <<< That’s a big part of why the exclusion is in the dx>>> so people get the help they really need. Instead of being pawned off on whatever’s convenient.

I just wouldn’t want you to miss something more serious.

 

[struggling101]

That’s the important bit.


Not at all. Drug induced delusions/psychosis/phobias/etc. are a HUGE deal, and that’s before the number of things, neurologically, that can be triggered or result from that kind of reaction.

PTSD is a fairly middling/mediocre disorder, on the scale of what can go wrong in someone’s life. The overwhelming majority of people with PTSD walk away, symptom free …with zero treatment… after 6mo. Whilst they still have a lifelong disorder, it’s just as likely to be asymptomatic for the rest of their life as to crop up, again. The next group, stats wise, gets to be asymptotic with treatment/therapy. It’s only the teeny tiny minority of people with PTSD/CPTSD who will be experiencing symptoms long term. To give actual numbers? I’ve read between 93%-96% completely recover reach asymptomatic. That’s a tremendous recovery rate.

In the US, with good insurance, you wouldn’t be sent to psych after drug induced psychosis/phobias/etc. You’d be sent to neurology & work with a cognitive therapist (not psych, brains) or speech pathologist. They run you through a bazillion and one bizarre cognitive/emotional/functional tests to figure out which areas of the brain have been activated, or are experiencing “after shocks”… and it’s all frankly weird. Like the texture of a painted wooden pencil versus plastic mechanical pencil, writing on concrete with chalk, creating wildly different physiological responses… or? None. Just like with TBIs (neuro-cognitive & speech pathologists work with TBI, Seizure, Starvation, & Medication induced XYZ as their bread and butter, but are also flown in to work with torture survivors, trapped by earthquake & other natural disasters, electrical workers & lightning strike survivors, etc., in addition to the trauma therapists and medical doctors… neurologists diagnose & prescribe, but the cognitive therapists & speech pathologists are the ones who actually work with you day in and day out to get you back to being yourself, again).

^^^ I’ve been through this a couple few times, in better countries with badass healthcare, and this one with badass insurance. So, firsthand, I can say how tremendously valuable it is to work with people who see things, like a ring finger twitch, or switching languages for half a second, or sheen of sweat and SEE problems I didn’t know I had, and know exactly how to fix them. And DID fix them.

I have PTSD, from complex trauma. I also have ADHD-C. And? I’ve had my brains scrambled a time or six (TBI, Drugs, Starvation, Electricity, more TBI… whee!). I cannot even begin to count how lucky I was NOT to be sent to psych, but sent to neuro/cog, the first time. So I understood the difference. And I adore trauma therapists! Truly. They’re fantastic at what they do. They’re just 2 very different fields. So? I see both, when I need both. Usually. I’ve also seen people who’ve spent 5/10/20 years under psychiatric care who are spending their first week in neuro… and FINALLY getting results. Because it wasn’t a psychiatric condition to begin with, or it wasn’t ONLY a psychiatric condition. Square peg? Round hole. Or triangle peg, round hole, and problem is labeled “treatment resistant” when it’s not. It’s misdiagnosed <<< That’s a big part of why the exclusion is in the dx>>> so people get the help they really need. Instead of being pawned off on whatever’s convenient.

I just wouldn’t want you to miss something more serious.

Thanks so much for putting in the time to share this!

I was lucky in the sense that the first person I went to with this was a neuropsychiatrist. He is of the opinion that the drugs are long gone and I am having psychological problems, which is why I have done quite a bit of therapy.

I have my doubts on whether he believes me or not (I’m 20 and in a country where doctors tend to not take young people seriously), but he seems to want to help which is a lot more than I can say for almost every other medical professional I’ve interacted with. The gaslighting I received was insane…

Anyway, thanks for the advice. I have my first EMDR session today and I’m really hopeful.