My Story - SSRI induced Hell and my experience 8 months on!

[PjTx]

Hi,

Long-time lurker of these forums ever since I had a negative reaction to an SSRI. I am still yet to determine whether I have HPPD or not as I have gone the usual run around with so many professionals who look at me like I’m crazy when I describe my experience to them.

 

A little about me, I’m a 31yo male from the UK. I have a past history of occasional MDMA use, I ended up in hospital one time with brain zaps and flashes of light in my vision on comedown one time and never took it again. The only other drug I have taken is weed maybe a decade ago and I think it was an analogue of DMT but I can’t remember. This was in 2008-2012. I gave up the weed many years ago as it made me feel lazy. For the last decade or so I have always struggled with anxiety on and off but never considered myself to be a depressed person and was very social and a good conversationalist. Despite this, I was prescribed Diazepam for anxiety by the doctor in 2016 and was taking up to 30mg daily which I have now manged to taper myself off. It was hell coming of it and I’m just over a month over my last dose.

 In mid-2021 I had a pretty nasty end to a long term relationship which left me feeling incredibly down and depressed. I was struggling quite a bit and unable to get back on my feet so I went to the good old doctor for help who then prescribed me the SSRI Citalopram. Upon commencing the medication I started to experience extreme head pressure, tinnitus (two tone ringing) extreme anxiety and sweating. I was on lowest dose for about 10 days when this happened and the doctor advised me to discontinue as the effects were unbearable. It took about 4 months for the ringing in my ears to stop and I returned to baseline depression

I was then prescribed another medication on the run up to Christmas 2021 which was Mirtazapine. Initially I felt my mood improved on mirtazapine but at the same time I had a nasty flu virus and discontinued it as it was making me feel extremely lethargic. So Christmas approached which is supposed to be the season of joy and I felt immense sadness around this period. First Christmas and New Year without my former partner. You know the drill.

In early January 2022 I returned to the doctor and he initiated me on Fluoxetine. This is the moment my life turned upside down into a living hell, get ready for this crazy ride…

Upon initiation of Fluoxetine (Prozac) after the first dose my ears started to violently ring and I struggled to catch my breath. I managed to get to sleep and get through the second day. My second dose of this med is what I believe blew my lid. I went to sleep again and in the night I woke up with insane head pressure and my ears violently ringing, I felt like I had stopped breathing in my sleep or something and I woke up in a complete haze not knowing where the fuck I was.

Symptoms after this event were terrifying. I basically broke down into a state of spasms, excessive sweating, auditory hallucinations (almost like there was water n my ears as sounds seemed like they were warbling as if you were kind of like underwater) 4 week long diahorrea, it was so fuckign fucked. I immediately stopped the medication but my ears were still ringing and over the next few days I developed a hissing tinnitus, like high pitch cicadas in my brain which is still happening to this day. I then started developing Palinopsia (Positive after images), insane sensitivity to light and sound which led me into a borderline psychotic, anxious and depressive state.

I went to the accident emergency and was left in the waiting room for 15 hours! Only to be discharged after CT scan which came back normal. I presented with like a 40 bpm heart rate, involuntary muscle jerking and was discharged with paracetamol and written off as anxious. I was experiencing additional symptoms such as honey comb like geometric pattern rotating in my vision as well as blips of light spots, phosphenes, visual static, slight nystagmus, pain beind my eyes, double vision, looking at patterns would trigger me to feel like I was going to faint. I feel like my right eye is not processing information the same as my left and so many fucked up symptoms to which some still happen today. It was so fucked. So fucking fucked. I was and still am convinced that I suffered some sort of chemical induced TBI from SSRIs. I tried to explain it to my family that is was like a bomb had exploded in my head.

The symptoms never faded and was in this state with all the symptoms for the better part of 3 months which left me confused and my family also. I went to my GP, a neurologist, a private psychiatrist who wrote it of as anxiety or migraine. The psych tried to initiate me on trazadone and the neuro wanted to initiate me on low dose amitriptyline and ai was like fuck that! Like fucking migraine and after images last every waking hour for 3 months solid! Get Fucked.

I ended up feeling lost, confused, suicidal and in a great amount of distress. No one believed me and I searched excruciatingly for answers everywhere before I found this forum. If my mother hadn’t called me just as I got to a bridge, I’d probably be dead.

I was admitted to a private mental health and rehab hospital for 6 weeks with the aim of getting me of the diazepam, mood stabilization and therapy to help my anxiety surrounding my visuals and raging tinnitus. The doctors kept saying, its probably the diazepam and i was like no, diazpeam has never done this to me unless i have kindled myself into oblivion somehow but i dont see how as io took regular dose daily.

The consultant psych assigned initiated me on Quetiapine and over the course of a couple weeks my mood stabilized but many of my symptoms remained. I then agreed with my psych doctor to commence a taper of my diazepam by 1mg every week for 4 weeks. I discussed with him a medication I read about called lamotrigine in which he agreed to trial me on to see if it helped with my visuals during my taper. I felt the taper hard and my anxiety skyrocketed. My mood was still fairly stable but the anxiety from the taper was pretty unbearable so he initiated me on Mirtazipine again as he could see I had no severe adverse effects from it in the past.

Whilst I was in there I had a second opinion from a different psych who had experience a TBI himself. He told me he has only ever seen 2 people in his career with something similar but he did not define it as 'HPPD'. He said one is anxious for his entire life, the other still expeirences shit 20 years on. He said that people with a past use of Amphetamines ( ie MDMA) can be particularly sensitive to SSRIs. He questions the addition of Mirtazipine to my regime as he said it is not selective. He was concered about potentially raising Dopamine levels to much or something like that at higher doses.

I made a tonne of friends in there that I will keep in contact with for life and my mood increased massively as I approached the end of my taper. I am now just over 1 months free from the hell of diazepam addiction and I feel pretty good about that. I dont drink anymore and try and live a healthy life as best as posiible. Unfortunatley i cant break the smoking habit just yet XD. I am able to almost live a fairly normal life looking after myself but i still feel cognitively impaired with a lot of symptoms.

 

 

---------------

I was discharged from the hospital on the following medication:

Lamotrigine 100mg

Quetiapine 150mg

Propanolol 60mg

Mirtazipine 30mg

 

Quiet a mad polypharmacy combo lol!

As you can see, my story is one of the most fucked hell on earth. Mid pandemic lockdown breakup, plus reaction to SSRIs maybe HPPD, Private hospital admission, Benzo withdrawal all whilst trying to complete my Final Dissertation in computer science. Just Fucking Fucked!

 

My mood subjectively increased since discharge but I still go through bouts of anxiety and depression as many of the symptoms I entered the hospital with still remain.

 

My current/ remaining symptoms are:

Palinopsia (the worst one! This is probably whats causing my dp/dr)

DP/DR (Feel like I’ve been living in a dream world for the last 8 months, like my memory is fucked or something)

Aphantasia (Inability to visualise recent short term meories, faces, events. My long term memory and logical thinking seems to be ok but still feel majorly cognitively impaired as compared to before the fluoxetine reaction. For example, i have since met someone new and i frget what her face looks liek everytime she leaves, like i remeber but find it so hard to visualize faces from past)

Tinnitus (Ringing in both ears with hissing cicada sound on top which seems to change or be worst when I wake up in the morning and before bed)

Slight Nystagmus

Breathing of objects, inability to focus on one spot.

Balance issues.

Still feel like one eye is not processing the same as the other.

Flickering in my vision at night with phosphenes.

Visual Static (mild reduced by lamotrigine I think)

light sources look like they are flickering /strobing

 

 

Apart from the depression surrounding the breakup, my life otherwise was going fine. I never had any of these symptoms, had a promising potential career in computer science and my cognitive ability was my pride. I feel a shell of what I once was before fluoxetine reaction but I’m doing much better after the hospital stay. I still continue to look for solutions to what I’m experiencing and so I signed up to this forum.

 

Medications Supplements I’ve tried:

Clonazepam – Only tried 0.5mg a few times on different days to test to see what it does for my palinopsia. It doesn’t really change much apart from it makes me care about it less and is a great anxiety killer.

Diazepam – Nothing for symptoms other than maybe reduced anxiety, my tolerance is way fucked for this anyway so I’d have to take high amounts to test properly but I never want to take this hell drug again after breaking free from it after 6 years.

Lamotrigine – I felt this had a better mood stabilizing effect than do anything for my visuals. Maybe the static has gone down a little bit?

Quetiapine – Not really sure what this is doing for me anymore. At first it made me drowsy and now I feel nothing from it apart from maybe weight gain.

Mirtazapine – I have a feeling the addition of this is what brought back some of my visual symptoms. I experience like a fake smoke or heat wave effect when looking at my hands close up in dim lit environments. I have also experienced form constants when looking at patterned objects. Planning to taper off from this as I see no benefit.

 

Supplements

CoQ10 – no effect

Omega 3 – no effect

Magnesium – No effect

NAC – no effect but made me start to cough after a few days, I’m a smoker btw and this supplement is supposed to be good for people who have cystic fibrosis so that probably why.

 

Medications & Supplements I want to try:

Keppra – Heard this is one with a high success rate and can be taken with lamotrigine

Alpha – GPC – Suspected I may have had an anticholinergic reaction to the SSRI and maybe a choline sup might help? I also hear stories of people saying this made their symptoms worse

Clonidine – Thinking this could replace my propranolol and there is research to suggest in can help HPPD and VSS

 

 --------------------------

I know this is a long post. I wrote it for myself so I can see how fucked things have been for me but would also like to get insight from others on what route I can now go down medication wise to try and treat whatever this is I’m experiencing. i would also like to know if there are any tests i can do to help diagnose what is happening still ( PET scan, EEG.Vep?)

I will be making an appointment with a consultant neuro opthamologist in London Moorfields eye hospital in the near future who hopefully can give me some answers 8 months on! From my research this neuro is one of the top in the world who also work with Dr Gordan plant who has published research into many eye/ brain disorders such as vs and hppd. I have a few theories, autoimmune respone from stress, chemical TBI, anticollinergic reaction,Benzo withdrawal ( unlikely though),MS, cerebral spinal fluid leak ( i had severe neck pain around the same time)

 

If anyone has any questions about my experience or medications please do hit me up below or PM and I will be glad to help!

 

TLDR: SSRI reaction leads to hell on earth, still kinda fucked 8 months on.

Thanks

Edited August 12, 2022 by PjTx
formatting

[help123]

Hello.I also have terrible visuals since august when I used big amounts of marijuana,MDMA and cocaine.I had to discotinue my studies because of the terrible visuals.A few months in ,it became a little bit worse.I still can drive,have a social live but it s horrible.I went through a lot of docs but no treatment was succesful.Clonazepam fixed 80% percent of my slight nystagmus like yours.Did you find a cause because I'm disperate to get rid of visual symptoms?

[AmitV]

On 8/11/2022 at 8:33 PM, PjTx said:

Hi,

Long-time lurker of these forums ever since I had a negative reaction to an SSRI. I am still yet to determine whether I have HPPD or not as I have gone the usual run around with so many professionals who look at me like I’m crazy when I describe my experience to them.

 

A little about me, I’m a 31yo male from the UK. I have a past history of occasional MDMA use, I ended up in hospital one time with brain zaps and flashes of light in my vision on comedown one time and never took it again. The only other drug I have taken is weed maybe a decade ago and I think it was an analogue of DMT but I can’t remember. This was in 2008-2012. I gave up the weed many years ago as it made me feel lazy. For the last decade or so I have always struggled with anxiety on and off but never considered myself to be a depressed person and was very social and a good conversationalist. Despite this, I was prescribed Diazepam for anxiety by the doctor in 2016 and was taking up to 30mg daily which I have now manged to taper myself off. It was hell coming of it and I’m just over a month over my last dose.

 In mid-2021 I had a pretty nasty end to a long term relationship which left me feeling incredibly down and depressed. I was struggling quite a bit and unable to get back on my feet so I went to the good old doctor for help who then prescribed me the SSRI Citalopram. Upon commencing the medication I started to experience extreme head pressure, tinnitus (two tone ringing) extreme anxiety and sweating. I was on lowest dose for about 10 days when this happened and the doctor advised me to discontinue as the effects were unbearable. It took about 4 months for the ringing in my ears to stop and I returned to baseline depression

I was then prescribed another medication on the run up to Christmas 2021 which was Mirtazapine. Initially I felt my mood improved on mirtazapine but at the same time I had a nasty flu virus and discontinued it as it was making me feel extremely lethargic. So Christmas approached which is supposed to be the season of joy and I felt immense sadness around this period. First Christmas and New Year without my former partner. You know the drill.

In early January 2022 I returned to the doctor and he initiated me on Fluoxetine. This is the moment my life turned upside down into a living hell, get ready for this crazy ride…

Upon initiation of Fluoxetine (Prozac) after the first dose my ears started to violently ring and I struggled to catch my breath. I managed to get to sleep and get through the second day. My second dose of this med is what I believe blew my lid. I went to sleep again and in the night I woke up with insane head pressure and my ears violently ringing, I felt like I had stopped breathing in my sleep or something and I woke up in a complete haze not knowing where the fuck I was.

Symptoms after this event were terrifying. I basically broke down into a state of spasms, excessive sweating, auditory hallucinations (almost like there was water n my ears as sounds seemed like they were warbling as if you were kind of like underwater) 4 week long diahorrea, it was so fuckign fucked. I immediately stopped the medication but my ears were still ringing and over the next few days I developed a hissing tinnitus, like high pitch cicadas in my brain which is still happening to this day. I then started developing Palinopsia (Positive after images), insane sensitivity to light and sound which led me into a borderline psychotic, anxious and depressive state.

I went to the accident emergency and was left in the waiting room for 15 hours! Only to be discharged after CT scan which came back normal. I presented with like a 40 bpm heart rate, involuntary muscle jerking and was discharged with paracetamol and written off as anxious. I was experiencing additional symptoms such as honey comb like geometric pattern rotating in my vision as well as blips of light spots, phosphenes, visual static, slight nystagmus, pain beind my eyes, double vision, looking at patterns would trigger me to feel like I was going to faint. I feel like my right eye is not processing information the same as my left and so many fucked up symptoms to which some still happen today. It was so fucked. So fucking fucked. I was and still am convinced that I suffered some sort of chemical induced TBI from SSRIs. I tried to explain it to my family that is was like a bomb had exploded in my head.

The symptoms never faded and was in this state with all the symptoms for the better part of 3 months which left me confused and my family also. I went to my GP, a neurologist, a private psychiatrist who wrote it of as anxiety or migraine. The psych tried to initiate me on trazadone and the neuro wanted to initiate me on low dose amitriptyline and ai was like fuck that! Like fucking migraine and after images last every waking hour for 3 months solid! Get Fucked.

I ended up feeling lost, confused, suicidal and in a great amount of distress. No one believed me and I searched excruciatingly for answers everywhere before I found this forum. If my mother hadn’t called me just as I got to a bridge, I’d probably be dead.

I was admitted to a private mental health and rehab hospital for 6 weeks with the aim of getting me of the diazepam, mood stabilization and therapy to help my anxiety surrounding my visuals and raging tinnitus. The doctors kept saying, its probably the diazepam and i was like no, diazpeam has never done this to me unless i have kindled myself into oblivion somehow but i dont see how as io took regular dose daily.

The consultant psych assigned initiated me on Quetiapine and over the course of a couple weeks my mood stabilized but many of my symptoms remained. I then agreed with my psych doctor to commence a taper of my diazepam by 1mg every week for 4 weeks. I discussed with him a medication I read about called lamotrigine in which he agreed to trial me on to see if it helped with my visuals during my taper. I felt the taper hard and my anxiety skyrocketed. My mood was still fairly stable but the anxiety from the taper was pretty unbearable so he initiated me on Mirtazipine again as he could see I had no severe adverse effects from it in the past.

Whilst I was in there I had a second opinion from a different psych who had experience a TBI himself. He told me he has only ever seen 2 people in his career with something similar but he did not define it as 'HPPD'. He said one is anxious for his entire life, the other still expeirences shit 20 years on. He said that people with a past use of Amphetamines ( ie MDMA) can be particularly sensitive to SSRIs. He questions the addition of Mirtazipine to my regime as he said it is not selective. He was concered about potentially raising Dopamine levels to much or something like that at higher doses.

I made a tonne of friends in there that I will keep in contact with for life and my mood increased massively as I approached the end of my taper. I am now just over 1 months free from the hell of diazepam addiction and I feel pretty good about that. I dont drink anymore and try and live a healthy life as best as posiible. Unfortunatley i cant break the smoking habit just yet XD. I am able to almost live a fairly normal life looking after myself but i still feel cognitively impaired with a lot of symptoms.

 

 

---------------

I was discharged from the hospital on the following medication:

Lamotrigine 100mg

Quetiapine 150mg

Propanolol 60mg

Mirtazipine 30mg

 

Quiet a mad polypharmacy combo lol!

As you can see, my story is one of the most fucked hell on earth. Mid pandemic lockdown breakup, plus reaction to SSRIs maybe HPPD, Private hospital admission, Benzo withdrawal all whilst trying to complete my Final Dissertation in computer science. Just Fucking Fucked!

 

My mood subjectively increased since discharge but I still go through bouts of anxiety and depression as many of the symptoms I entered the hospital with still remain.

 

My current/ remaining symptoms are:

Palinopsia (the worst one! This is probably whats causing my dp/dr)

DP/DR (Feel like I’ve been living in a dream world for the last 8 months, like my memory is fucked or something)

Aphantasia (Inability to visualise recent short term meories, faces, events. My long term memory and logical thinking seems to be ok but still feel majorly cognitively impaired as compared to before the fluoxetine reaction. For example, i have since met someone new and i frget what her face looks liek everytime she leaves, like i remeber but find it so hard to visualize faces from past)

Tinnitus (Ringing in both ears with hissing cicada sound on top which seems to change or be worst when I wake up in the morning and before bed)

Slight Nystagmus

Breathing of objects, inability to focus on one spot.

Balance issues.

Still feel like one eye is not processing the same as the other.

Flickering in my vision at night with phosphenes.

Visual Static (mild reduced by lamotrigine I think)

light sources look like they are flickering /strobing

 

 

Apart from the depression surrounding the breakup, my life otherwise was going fine. I never had any of these symptoms, had a promising potential career in computer science and my cognitive ability was my pride. I feel a shell of what I once was before fluoxetine reaction but I’m doing much better after the hospital stay. I still continue to look for solutions to what I’m experiencing and so I signed up to this forum.

 

Medications Supplements I’ve tried:

Clonazepam – Only tried 0.5mg a few times on different days to test to see what it does for my palinopsia. It doesn’t really change much apart from it makes me care about it less and is a great anxiety killer.

Diazepam – Nothing for symptoms other than maybe reduced anxiety, my tolerance is way fucked for this anyway so I’d have to take high amounts to test properly but I never want to take this hell drug again after breaking free from it after 6 years.

Lamotrigine – I felt this had a better mood stabilizing effect than do anything for my visuals. Maybe the static has gone down a little bit?

Quetiapine – Not really sure what this is doing for me anymore. At first it made me drowsy and now I feel nothing from it apart from maybe weight gain.

Mirtazapine – I have a feeling the addition of this is what brought back some of my visual symptoms. I experience like a fake smoke or heat wave effect when looking at my hands close up in dim lit environments. I have also experienced form constants when looking at patterned objects. Planning to taper off from this as I see no benefit.

 

Supplements

CoQ10 – no effect

Omega 3 – no effect

Magnesium – No effect

NAC – no effect but made me start to cough after a few days, I’m a smoker btw and this supplement is supposed to be good for people who have cystic fibrosis so that probably why.

 

Medications & Supplements I want to try:

Keppra – Heard this is one with a high success rate and can be taken with lamotrigine

Alpha – GPC – Suspected I may have had an anticholinergic reaction to the SSRI and maybe a choline sup might help? I also hear stories of people saying this made their symptoms worse

Clonidine – Thinking this could replace my propranolol and there is research to suggest in can help HPPD and VSS

 

 --------------------------

I know this is a long post. I wrote it for myself so I can see how fucked things have been for me but would also like to get insight from others on what route I can now go down medication wise to try and treat whatever this is I’m experiencing. i would also like to know if there are any tests i can do to help diagnose what is happening still ( PET scan, EEG.Vep?)

I will be making an appointment with a consultant neuro opthamologist in London Moorfields eye hospital in the near future who hopefully can give me some answers 8 months on! From my research this neuro is one of the top in the world who also work with Dr Gordan plant who has published research into many eye/ brain disorders such as vs and hppd. I have a few theories, autoimmune respone from stress, chemical TBI, anticollinergic reaction,Benzo withdrawal ( unlikely though),MS, cerebral spinal fluid leak ( i had severe neck pain around the same time)

 

If anyone has any questions about my experience or medications please do hit me up below or PM and I will be glad to help!

 

TLDR: SSRI reaction leads to hell on earth, still kinda fucked 8 months on.

Thanks

bomb exploding in the head is this:

https://akathisiaalliance.org/wp-content/uploads/2024/01/Guide-for-Clinicians-012224-editable.pdf
 

https://rxisk.org/pyridoxal-5-phosphate-and-akathisia/