Beefol

Hey guys and girls!

My worst symptom on my journey with what i think is „something in the field of hppd“ is sound sensitivity. After months of research i finally think that it is - in my case - mostly middle ear related. The massive anxiety in the first weeks with mild visual symptoms completely messed up my startle response which is deeply connected to the muscles of the middle ear. If you startle - the tiny muscles in the ears contract heavily to protect you against loud sounds. Those contractions can become chronic, even if the anxiety that caused it in the first place is mostly gone. My approach now is a surgery in the middle ear in which the surgeon cuts those tiny muscles (you dont nessecarily need them).

To be more sure with the diagnosis before cutting those muscles (its permanent) i could try the antiepileptic carbamazepine or the newer version of it, oxcarbazepine. This medication calms the facial nerves which innervate the muscles in the ear. And if that works for my sound sensitivity its very likely that the surgery will work too.

So, do you think its safe to use it for maybe 2-3 weeks in a moderate dosage or is it risky and i should just have the surgery done? 

Hope youre doing good, stay strong  

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.