Beefol

11 hours ago, AmitV said:

It was a delayed onset

How long was the delay? Have you had some kind of noise sensitivity along with your Tinnitus?

19 hours ago, brake said:

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

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

@Roman i was under Propofol for 1-2 hours, did nothing to my symptoms 

1 hour ago, Jay1 said:

 

It's possible that it is all interconnected through drug use.. At this point though, i would not think of it as hppd unless your mild visuals are still there too?

Even hppd itself should probably be divided and treated as sub issues (anxiety, depression, visuals, dpdr etc)... I think grouping it all into one condition is a bit limiting.  

 

I definitely still have some mild visual symptoms. I have never noticed BFEP before all of this and now i see it everywhere. Mild snow on smooth surfaces, pattern glare, sometimes closed eye visuals. And the ear stuff started in the 1-2 months after the shroom trips. And after massive anxiety.

On 1/17/2024 at 4:29 AM, heroku said:

 

What do the tinnitus and hyperacusis feel like? I think I might have something similar.

 

Tinnitus is ringing in the ears and hyperacusis is a lowered tolerance against sound thats not too loud for people with normal hearing.

Hello everyone,

I have a question about the onset of symptoms in HPPD. Is it possible for symptoms to start 1-2 months after the triggering trip? 

I consumed mushrooms in October 2022 and noticed mild visual symptoms 2-3 days after. This was followed by severe dizziness, head pressure and anxiety.

It wasn't until January/February that I experienced the symptoms that cause me the most problems: Tinnitus and hyperacusis. However, since then I have been wondering whether the tinnitus and hyperacusis have anything to do with HPPD at all or whether they simply started by chance shortly afterwards. Because in the first 1.5 months after the trip, I haven’t noticed those symptoms at all..

stay strong!

8 hours ago, Shadow said:

This is for the moderators @Jay1, @Fawkinchit and others who are researching for a cure online.

I would like to pick your brains on something, since you have more experience playing around with antiepileptics than tinnitus sufferers.

I got poisoned by fluoroquinolone antibiotics, which made me lose sleep, as well as give me physical issues.

To help with sleep, I was given Mirtazapine. BIG MISTAKE, it almost killed me in my compromised state, but I never realized it until it was too late. By the time I realzied it, I had full blown HPPD. It only got worse after I cold turkeyed it.

Initially, my main symptom was Tinnitus and Hyperacusis. WHile doing research online, I came across an antiepileptic called Retigabine, a KV7.2/3 modulator (potassium channel openers). People reported success with it in the past for their tinnitus, some even got cured. You can find more info on TinnitusTalk.

However, it gave some people VSS as well. It worked on multiple receptors, voltage channels, that's why it had many nasty side effects. It got removed from the market.

Now, they are reworking it to have less side effects and be more potent and more specific.

These two drugs are called XEN1101 and BHV-7000. BHV-7000 will hit KV7.2/3 stronger than Xen1101 and is more potent in hitting those two potassium channels and only those two. Whereas Xen1101 will have similar action to Retigabine but woN't have side as many side effects as Retigabine. It will hit Gaba, KV7.2/3 and to some extend 7.4 and 7.5.

The tinnitus community is waiting patiently for these drugs to come out....

Gabapentin also hits Kv7.2/3 and to some extend Gaba, I guess. Some people report in reduced visuals with it, also some people report, reduced tinnitus while on it.

Do you think, these two upcoming potassium channel openers could help with our visuals, based on your research?

Please look into them if you haven't already. Maybe they'll be able to help us?

 

Please read my posts! I had/ have major problems with hyperacusis and tinnitus after taking mushrooms one year ago. Would like to hear your story with it!

Was on 3x1000mg Amoxicillin for 30 days and there was no change on my symptoms.

I cant do anything for you man, but i know that the headpressure thing can absolutely get better. I think you have it much more severe than me, but after 9 months it’s totally gone. The brainfog too. Started to get better after 3-4 months, then times with flareups and then it slowly faded away. 
 

I know, its much longer for you. But for months i thought that my brain is permanently damaged. It wasn’t.

1 hour ago, Jay1 said:

Have you had any check at the doctors though... Could be something non hppd related and easier to fix?

Maybe its lyme. I was bitten by a tick one month before my HPPD started. All the antibody blodtests were negative. A few days ago i made a skin-PCR from the skin where the tick bit me, and its positive af! 

Thank you @Jay1 for your answer.

Its the same for me and super debilitating. Was the onset of those symptoms right after the onset of your HPPD? 
 

For me, the hyperacusis is so strong that i am homebound 24/7. 

It flared up in February, then i got way better during end of march and april, lived relatively normal in may and June. Now its back like in february. 
 

You said that it comes in waves.. how long are these waves for you? 

Thank you @Jay1 and @firehawk for your replies.

@Jay1 could you describe this symptom a little bit better? Is it so severe that you can’t do anything without earplugs? 
It started 1-2 months after my visuals.. and my visuals are super, super mild in comparison to the baaaad hyperacusis..

I have no clue what you are talking about.

English is not my motherlanguage, but the sentences just dont make sense.

Hi!

Tinnitus is known to be a common symptom of HPPD.

Has anyone here ever heard of hyperacusis, i.e. (extreme) noise sensitivity in the context of HPPD?

I've been trying to figure out for months if my problem has something to do with my mild HPPD, or just happened to start in the 1-2 months after without any connection. 
 

Stay strong..

Thank you for answering @brake!

All your symptoms decreased around 80% or just the tinnitus?

Hey @coolrunnings91,

how are you now? Hope youre doing fine!

Your post could spend much hope for new people in the forum! 

Hey @Joseph06__,

there is a good chance for you getting better if you stop all drugs immediately and for the rest of your life. Even Cannabis, Alcohol, Nicotine and maybe coffeine for a while. 
 

Try to eat healthy, do sports  and distract yourself as much as you can. Try not to google that much. Anxiety is a big part of hppd and it can create symptoms that are comparable to hppd.

Youll have a hard time now, but many people get much better after some time. Some ppl are totally healed after months or few years. 
 

And even if youre better. Never touch drugs or alcohol again. Sounds hard in the first place, but hppd can come back so much worse. 
 

stay strong

Thank you for answering!

Have you been tested positive for lyme on the normal ELISA Igg/igm?

Hi! 

My doctor prescribed me Doxycycline yesterday (200mg a day for 20 days). I have read many scary stories about antibiotics and especially doxycycline. Many write that the symptoms have worsened extremely and partly in the long term. 

Are these rather exceptional cases, or is there really a big risk? I am unsure and don't know whether I should take it.

Thanks to everyone!

Hey @James91,

how are you now?

Hey @Mnc

How are you now?

I wish you all the best! Stay in close contact to the doctors! 
 

Hey..

are there any succes/ relief stories about Tinnitus coming with hppd?
 

I dont know if mine is from hppd or the stress/anxiety coming with it. But the ringing is getting louder and more permanent.. 

Hello everyone, in a post a few days ago I already told in detail about my (probably) hppd-story. At this point I would like to briefly report again about my symptoms. Maybe someone has had similar experiences, and can give me some hope.

Between the beginning of September and the end of November I had a couple of psilocybin trips (4) and after that the symptoms developed something like this:

End of November, after the last trip (im completely sober since then): very mild visual snow, BFEP, light sensitivity (Only in the dark, for example at traffic lights). However, all on a level where I'm not sure if it was always like that. Meanwhile, the possible visual symptoms don't bother me at all. Maybe it was always like that and im just hypochondric.

Until about mid-December: massive anxiety due to the possible visual changes. The anxiety is 90% gone now.

Since mid-December: pressure on the head, always in different regions, sometimes stronger, sometimes weaker, sometimes hardly noticeable. Together with the pressure on the head, a kind of dizziness developed, as if my brain was spinning when I moved my head. In addition, and this is now my worst symptom: hyperacusus at certain, especially rather quiet sounds. The sound of coins, the bunch of keys, light switches. These sounds resound incredibly loudly through my skull, amplified tenfold, and cause physical ear pain. Feels like it is getting worse day by day. 

Has anyone experienced anything similar, or even improvement in these symptoms? It is hard for me to remain hopeful at the moment. 

Hello everyone, in the following I would like to tell you about my experiences of the last two months. Even if probably no one can help me directly, I would be happy if some of you read my (probably quite long) post. Maybe there is someone with similar experiences. Besides, it's good to get everything off my chest and to exchange ideas. 
 

English is not my motherlanguage, i used deepl for translation, so maybe some mistakes. 

First of all: I am aware that many people here in the forum have much worse symptoms than I do. And that for a much longer time. My thoughts are with you, and I wish recovery for everyone here. With all my heart. 

For a few weeks now I have been dealing with various symptoms that raise some question marks for me. I suspect that they have something to do with HPPD. Here is the whole story: 

My exposure to drugs is very limited compared to other people on this forum. It all started in late 2020. I was 26 years old at the time. I had never used drugs up to that point, not even the smallest amount of marijuana. Sure, now and then alcohol, but also rather rarely, on special occasions.

One day a friend told me about MDMA. I found it exciting, informed myself about the safe use and one day we decided to consume once together. It was about 120mg spread over a whole night. It worked exactly as expected. My first and directly wonderful trip. 

In the weeks that followed, I kept noticing a kind of light dizziness over my eyes, plus some pressure on my head, mostly in the forehead area. I felt slightly dizzy, especially in stressful moments or when there was an argument with my girlfriend. However, these complaints disappeared completely after a few weeks. In the following 15 months I didn't take any drugs, except occasionally a few puffs of a joint. However, only in very small quantities, always with many weeks distance in between.

New Year's Eve 2021 (over a year after the first time) then the second MDMA trip. Actually I didn't want to take anything, but after a few beers I decided to do so and took about 200mg that night. This time without any consequences or symptoms in the weeks after. 

In May 2022 then my third and also last time MDMA. Again without after-effects. 

In September 2022 I finally discovered psychedelics, psilocybin to be exact for me. Between the beginning of September and the end of November 2022 I experienced 4 wonderful trips (2 rather low doses, 2 medium to high doses). All were "perfect" and completely free of anxiety or bad feelings. Even in the days after, I felt incredibly well, like I was born again. 
I must mention at this point that I am prone to hypochondria, and often get carried away with possible symptoms of illness. 

During the time of the psilocybin trips, I also kept reading about HPPD, so I checked my field of vision for possible symptoms, but never found anything after the first three trips. 

During the last trip (end of November 2022) I pulled a few times on a joint in addition to the consumption of the mushrooms. The trip was again wonderful, probably the most beautiful of all. 
 

In the days after the last trip, I suddenly began to wonder: does everything look a little different here? Slightly visual snow? Slightly enhanced afterimages? Is my screen glittering? Has it all always looked like this? 
So I thought I was perceiving mild HPPD symptoms, but at no time was I sure if I was imagining it all, or if everything really did look a little different. Even in the bright blue sky, I felt I saw more floaters than usual, and perceived an enhanced blue-field-entoptic-phenomenon. No DP/DR. 

This apparent change in perception plunged me into incredible fear, anxiety,  panic, and despair. For about three weeks I thought "my life is over, I gambled it away." I didn't know until that point that such fear could even be perceived. After these three weeks, when I slowly started to come to terms with it and to simply tell myself that I had only imagined the visual symptoms, suddenly a very strong pressure started inside my skull/head. This occurred in conjunction with exactly the same dizziness that I experienced for a few weeks after my first MDMA use. In addition, I began to perceive quiet noises that one does not really perceive at all suddenly incredibly loud and disturbing. 

Around Christmas, these symptoms subsided, and for three days I thought I was over it and actually felt cured. 

Then just before New Year's Eve I experienced another two days of pure anxiety due to a private event. The anxiety had nothing to do with HPPD, but it triggered the same symptoms I had experienced before: head pressure and extreme sensitivity to noise. This sensitivity to noise (hyperacusis) has been getting worse for two weeks now since then. The pressure on the head has almost disappeared, but small, quiet noises sometimes make me go crazy. The jingle of a key, the sound of coins in the wallet or the click of a light switch. Everything sometimes sounds as if it were amplified tenfold right in front of my ears. These sounds literally cause pain in my ears and can trigger dizziness quite directly. It's like they hit my head like a fist to the ear. However, I continue to perceive normally loud sounds pretty normal. I can converse with people, walk past noisy streets, and listen to music relatively normally. In addition, with many sounds I hear a kind of echo in my ears that feels like an impulse right after the sound itself. For example, I snap my finger in front of my ear, hear the sound, and a split second later it throbs once briefly in the region of my eardrum. I don't have tinnitus yet, except sometimes a very soft, stream-like noise in absolute silence. However, not always, and I believe that I have been experiencing this since childhood. 

Sumarized: the visual symptoms are now negligible. Maybe I am imagining them, maybe they are really there. I don't know, and probably will never find out. After all, almost everyone has a certain amount of afterimages, visual snow, floaters and starbursts. 
The anxiety has also subsided for most of the time. If anything, the hyperacusis is getting worse day by day. Im also feeling pressure on my ears and in the region behind the ears.

Thanks to all who have read my text up to this point. I would love to hear from people who have or have had similar symptoms, and would love to hear if these symptoms have subsided over time. A little hope would do me a lot of good right now, because at the moment the hyperacusis is just killing me. 

Im wishing all of you the best. 

One last question: how do you perceive your Visual Snow? Always and over the whole field of vision? Or can it also occur exclusively in dark corners or on very smooth surfaces? Because you often read that Visual Snow occurs in the entire field of vision. However, if I hold my hand in front of my face in daylight, I see absolutely no visual snow. Only in low light conditions or in dark areas of a room. But rather mild.