AmitV

On 4/21/2024 at 9:08 AM, brake said:

Yeah dude my tinnitus was pretty bad and now I rarely get it although I still do get it.

How long did it take for it to start easing? Did anything specific help with it?

On 4/22/2024 at 4:27 AM, Beefol said:

Has your Tinnitus started right after your Onset of HPPD or was it delayed?

It was a delayed onset

Listed in section 4

lot of over the counter options

bacaical skullcap is my favorite. Tincture from I iherb is pretty relaxing.

but lots and lots of options. Careful not to pick the (antagonists). I’m not sure of the modulator class either.

https://www.intechopen.com/chapters/78514

6 hours ago, Jay1 said:

3rd day taking P5P (150mg, once in the morning). Nothing noticeable yet (good or bad), with the exception of feeling nauseous for a few hours after taking it. 

Please start low, I recommend 50mg. Not too much. Since it works via enzymes and works like a vitamin that builds up overtime. I would say, slow titration every 2 weeks. 

Anyone here who also has tinnitus and eventually got better or went away? Ive had tinnitus now for almost 10 months.

On 4/9/2024 at 10:09 AM, AF44 said:

Wow, thanks so much for that! It makes a lot of sense to me and you are obviously quite intelligent and well-informed. I’m looking forward to watching this YouTube video. I have been on clonazepam for over a decade. Interestingly enough, after using LSD multiple times, I had very slight visual symptoms that never bothered me at all, I just thought it was a little weird and figured it was something that happened because of LSD use. The trip that tipped me over the edge into full blown HPPD was a HORRIBLE trip! I can’t even describe how bad it was and how terrifying. I was also taking an antibiotic for a UTI at the same time, Ciproflaxin. That stuff is poison in and of itself. I always wondered if the combination of the two is what caused my terrible HPPD. Sorry, I might be veering off the path of what we were talking about in the first place. I’ve always had a wandering mind and it’s worse the older I get! Thanks again for all the great info!

It was the combination. 
the panic attack from lsd and anti-gaba properties of antibiotic. 

For reference: the drugs listed here on page 3 are the ones to avoid going forward. Forget that it refers to akathisia, it’s the same mechanism. Brings all the craziness forward in the mind.

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

My best recommendation to counter this effect. And it’s not straightforward 10 day recovery. It takes time. 

niacinamide - 3000 mg/day

P5P - as tolerated (increases GAD enzyme) converts glutamate to gaba

 gotu kola - as tolerated (increases gad enzyme) converts glutamate to gaba

 Hydroxy b12 - as tolerated (increases comt enzyme, breaks down serotonin, dopamine and norepinephrine in frontal cortex- stress relax)

 lavender oil capsules - used for restlessness and agitation (take as tolerated)

 Antioxidants (glutathione, NaC) - reduces overall glutamate.

The goal is reduce glutamate, increase gaba. Breakdown dopamine (hyper arousal), norepinephrine (sympathetic stress), lower serotonin.

glutamate - stress

 gaba - relax

 dopamine - hyperarousal, can be calming for some

 norepinephrine- sympathetic stress (breathing difficulties, palpitations, blood pressure)

 serotonin - it’s a hoax!

9 hours ago, AF44 said:

Oh btw I forgot to ask, does it help with the weird dizzy/internal vertigo/swaying feeling? 

Not particularly. But I had a lot more symptoms, that went away with it. As I understand HPPD, PPPD, VSS are all Functional Neurological Disorders from Trauma or brain trying to get rid of stress. Have to recognize if that stress is coming from past trauma or medication-encited event like akathisia and dyskinesia and treat accordingly. If someone has specifically "childhood" trauma, they should consider EMDR trauma therapy as well..

Functional neurological disorder (FND) | NHS inform | NHS inform

All of this coming from stress/stuck in fight-flight/inner turmoil. The amygdala has deep connections to visual perception, vestibular, auditory, and sensory processing centers. Calm the amygdala down with treating your trauma and these problems go away. Naturally, this is not a psychotic condition, symptoms are 100% real! But people don't have the proper understanding of psycho-somatic/functional neurological, symptoms are fucking real! You're not crazy, you and I are in pain! It's fucking hell! The brain does this to protect you from pain (PTSD), because it feels you're injured. Resolve the pain/trauma and the check engine light goes off, and symptoms go away.

This has nothing to do with serotonin, this is dopamine, gaba and norepinephrine. So try all kinds in the form of supplements, gaba enhancers like P5P, gotu kola, niacinamide. Noepinepherine reducers like clonidine, magnesium l-threo. Or Dopamine agonists, if dopamine agonists make you worse, then check if you have slow comt or overmethylating and load up on niacinamide and hydroxy b12.

All the success stories from clonazepam, are simply that the amygdala stayed calmed down for 2 months and abolished the maladaptive circuit. You go off it, knowing how FND's emerge due to pain and trauma, and the pain of withdrawals kick it back up again, some only experience mild withdrawals.

Clonidine utilized in some older pieces of HPPD literature, lowers norepinephrine in the amygdala (lowers stress response).

So ideal candidates are things that stick such as P5P, niacinamide and some more. See youtube link below. Breathing exercises and distraction, greatly help. 

Not everything works for everyone as you know, so it can be a bit of an effort to figure out what works, if it does you will feel the racing thoughts in your mind slowing down within 3-5 days. This is the same problem with drug-induced akathisia, what works for one makes another person worse. If it works, it works in less than 7 days! The same thing many have reported on this forum with some meds, works really quick if you strike the right one! Strangely akathisia is also a dopamine and gaba problem, that flips the switch on drug induced inner turmoil/trauma.

The racing mind is a function of trauma/pain, which causes HPPD, VSS, PPPD, Head Pressure, muscle stiffness, tremors, and fatigue in the form of functional symptoms, previously known as conversion disorder.

"Converts" mental trauma/fear to neurological symptoms. Most people with HPPD will attest that the one event brought a lot of traumas forward in the mind and can't stop the mind from racing, although they are more preoccupied with the symptoms than the mental comorbidity. Truth is have to calm the mind, for the symptoms to resolve. Benzos do that, but well you know what happens with tolerance, withdrawal, etc. Until such time underlying trauma/racing mind/trauma is resolved, symptoms will morph from one to the next, 6 months hppd, then pppd, then head pressure, then something else, then a lot of mixed symptoms. So benzos aren't a solution, benzos are sedating and suppressing trauma resolution pathways, that's why they cause dissociation. If trauma is suppressed, it has to come out in some way, it'll show up as dissociation.

8 hours ago, AF44 said:

Is active vitamin b6 the same as taking an OTC supplement, or is it something different?

Its just OTC active vitamin b6, not the regular b6. I got it off iherb

8 hours ago, AF44 said:

Not that this has much to do with your question (sorry!) but your story reminded me of when my husband was put on Cymbalta. It’s an antidepressant that is supposed to also help with peripheral neuropathy (which my husband has.) The side effects were bad so he stopped taking it cold turkey even though I told him that was not a good idea, that he should taper off of it; he didn’t listen because he’s stubborn lol. Anyway, he was out of commission for literally about a year. It was HORRIBLE. I can’t remember all of his symptoms but he was having constant muscle twitches, couldn’t think straight, was miserable. He sat in his recliner 24/7. He could not work. We had to cash out his 401k or we would have been screwed. Like I said, it took about a year and he started feeling back to normal and got a good job that he still has and has excelled at. But…sometimes he gets like brain fried and kind of feels like he did back when he quit the Cymbalta. I don’t think he has or got HPPD from Cymbalta but it did SOMETHING horrible to him that to me sounds similar to those “fried” symptoms I get. I’ll have to ask him if he had visual snow or other HPPD symptoms because now I’m curious.

I've had the exact same experience, except I got tinnitus, vss, hppd, disequilibrium and akathisia. Fucked me up royally. Was able to get the akathisia (agitation, head zaps, body zaps) and dyskinesia (tremors, twitches) to stop with Niacinamide and P5P. I'm 15 months out, things have gotten better, but I'm still between the couch and the bed, thankfully I disability payments that come from my employer, so I'm just getting by for now, at a snails pace.

Microsoft Word - 1976-v05n01-p004.doc (isom.ca)

Pyridoxal-5-Phosphate and Akathisia - RxISK

If dopamine enhancers made anyone worse, then try the opposite.

Did anyone try clonidine, as per numerous online resources?

11 hours ago, brake said:

True but it's been 11 years and I'm becoming impatient. Even valium, xanax and klonopin have it's limits. Lamictal was working somewhat however of course I get side effects from it so I had to stop taking it. It is better at certain moments like I got that completely sober feeling recently and can imagine again how someone would think that it would be impossible to still be tripping long term. The job market is terrible nowadays which doesn't help either.

The best recommendation I can give you, is an understanding that HPPD is a functional neurological disorder. Past Trauma, stressful lives, toxic exposures, infections, medication toxicity, turn down good genes, fires up the fight-flight center to keep you safe. The drug is gone, but the brain still feels unsafe (fearful - Ultimate fear) because of the original injury. Racing thoughts in the mind at 3000mph. The fight-flight center has deep connections to the visual perceptual (VSS, HPPD), auditory (tinnitus), limbic (pins and needles), motor (tremors, twitches, etc. ) and vestibular functions (dizziness). It creates maladaptive pathways to keep you safe and bedridden. That's why Klonopin works, because it targets the fight-flight (amygdala), once the amygdala calms down, the brain begins to feel safe and begins to ditch the maladaptive pathways to visual, auditory and vestibular systems. But you can do the same with nutritional supplements (megadoses of certain ones) and breathing exercises (calm down the speed of thoughts).

But there is another way! Custom supplements to support the genes that have been turned down by trauma or drug use. By utilizing specific nutritional supplements to support the downregulated enzymes. 

I ran a 23&me test, didn't care about the 23&me crap. Uploaded raw data to geneticgenie (free), and nutrihacker (free). This is what I got. Attached.

Here's another drug-induced dyskinesia article that may help, that explain how megadose can reset the fight-flight system.

Microsoft Word - 1976-v05n01-p004.doc (isom.ca)

24 minutes ago, brake said:

Good research however I found that high doses of vitamins b6 and b12 made me hysterical.

I gained access to some good AI and asked it about visual snow and was blown away with it's accurate information and how quickly it was written. It listed the right temporal lobe as being affected.

supplements and meds both can be hit or miss. What works great for one, does not for the other. This is true amongst all kinds of psychiatric and neurological disorders. 

I recently did a QEEG which showed hyperactivity in my right temporal lobe. Which includes the amygdala (fight-flight), hippocampus. The temporal lobe has deep connections to limbic, auditory, visual perceptual centres of the brain. Essentially the treatment is breathing exercises, slowing down thoughts, distraction, trauma therapy. 
 

https://my.clevelandclinic.org/health/body/16799-temporal-lobe

The QEEG I did also lines up with the below application of RTMS for HPPD.

but the temporal lobe also responds to epilepsy medications and supplements in calming the temporal lobe in temporal lobe epilepsies. It’s also an area affected in schizophrenia. HPPD isn’t a psychiatric disorder, but a functional neurological disorder.

https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/functional-neurological-disorder/

which is why clonazepam, keppra, memantine, magnesium and several other epilepsy supplements sometimes work. Epilepsy diet which is primarily keto diet is also helpful. 

increase gaba and decrease glutamate (antioxidants and magnesium), can help. 

Niacin according to my research in high dosages is highly applicable. Saturating the brain with niacin leads to immense relief from oxidative stress, overall stress, calming of thoughts, it reduces methylation, is utilized in schizophrenia, ptsd, and several related conditions such as drug induced akathisia and dyskinesias.

On 3/6/2024 at 1:45 AM, Jay1 said:

Do you mean the SSRI was what started your illness or you have now started on SSRIs to try to help the issue?

If it was an SSRI that caused your issues, you could probably class that as HPPD... but really, it makes no difference what you call it.. The treatment, things to avoid etc are all the same, from what I have read. 

Yes SSRI trintellix started it. As far as I’m aware trintellix is a glutamate agonist and was modelled as an antidepressant after mushrooms.

Did it help?

Whoever this person is, is trying to imply that HPPD is a functional neurological disorder. Which comes with hypervigilance and severe anxiety. The problem with this theory is drug induced akathisia and parkinsonism is 80% of times diagnosed as hypochondriac or FND. When in fact it is a real condition.

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/

I started active vitamin b6 (p5p) for treating drug induced akathisia. Turns out it increases production of the liver enzyme that delivers brain gaba. An immense relief from anxiety, agitation. Noticed my visuals improved 40% over 2 months. Still have some crazy stuff. Who knows someone might get a bigger benefit out of it. No side effects. I’m up at 500mg/day. Split into 3 doses per day. Some people report nausea and headaches over 100mg doses. But my understanding is in some people 50mg is enough for an impressive improvement. 
 

Thought it was worth sharing here.

Hppd seems to be a functional neurological disorder. Symptoms can morph between range on any FND symptoms including head pressure and dizziness.

anyhow my best suggestion is the steady coach program on YouTube. It’s free. You will understand the core concept of stress and past trauma, how to resolve in order to resolve symptoms.

https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/functional-neurological-disorder/

See clinical guide. I fear some are still experiencing the subjective experience of it.

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

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

Me too!

Hello, been suffering this debilitating illness for a year now started with trintellix (SSRI). 
 

im trying to figure out if i have HPPD or VSS? I have visual snow, tinnitus, afterimages, pallinopsia, tracers, starbursts, halos. I don’t have micropsia, macropsia. What i have movement of my surroundings, like the hallway sways when I walk. When I move my head the floor tilts. Can anyone shed some light on it. I do have swaying also.

Anything interesting in the pet scan