Can’t handle this much longer

[Johan0987]

Hey,

Good to hear that your HPPD isn’t too bad and that you are recovering. DP/DR is probably the worst symptom, so good to hear that’s gone (with me for the most part also but sometimes it comes back). You’ll get used to the moments when it gets more noticeable. I have tinnitus (not very bad) for many years now (long before the HPPD came) and at first i couldn’t sleep because of it but now it doesn’t bother me at all anymore.

I think the steps you are taking to let it heal are good, you’ve found your triggers. Never using drugs again is a very good step. Even caffeïne or nicotine can worsen HPPD very bad (speaking from experience unfortunately..).

To answer your questions:

I don’t take thiamine, so don’t know if it helps. There are a lot of supplements and/or meds that potentially can help but what works for one can not work for another or worsens another one. If you want to go the supplement/med route, i advise you to visit a doctor (best is one who knows HPPD, but they are can be hard to find). Experimenting with supplements / meds is a bad idea with HPPD in my opinion, because your brain is much more sensitive to substances than before and you can’t know before what will trigger you and what will help.

My main triggers are:

- stress / anxiety

- any kind of stimulants, can even be adrenaline wich is produced by the body itself. Very important for me to stay calm haha.

- work / rest balance is very important to me because when i work too much my symptoms get worse, i have to get enough rest every day (everyone does but i need more than a “normal” person).

I can’t say that there are kinds of food that trigger me, so i don’t take a special diet. Just trying to eat healty from day to day, sometimes i eat unhealty but don’t notice that it triggers me.

Last advice:

This is not to scare you or make you feel bad, but i want to warn you. My HPPD wasn’t very bad at first but did get a lot worse over the years because i didn’t know my triggers and didn’t listen to my body. At least for the next few years(!) you have to monitor yourself to make sure your symptoms aren’t getting worse again, and stay off everything that triggers you. You can’t drink a coffee or smoke a sigarette (if these are triggers) if you aren’t recovered, so don’t. I got a very bad relapse due to nicotine.

Your steps to recover are good, so i think if you keep doing that and look out for yourself every day, you can make a pretty good recovery. There will be some symptomes left but you’ll learn to live with it.

All the best!

[Gabriel S.D]

Hi, I didn't know adrenaline could be a trigger tho. I'm going to pay more attention how I feel after the gym haha. I don't know if there is any doctor who knows hppd in Brazil, and if there is it must be really expensive haha, so maybe just waiting and beeing healthy can be the solution in this case. I'm taking thiamine because of the depoiments and It's something necessary for brain health, I haven't found any side effects related to it. But of course, if I noticed any side effects I would stop taking it.

And also didn't know u had it for so long (years), nice to see you reached so far.

Anyway thanks for the advices, and update us about your improvements!

Good recorver 4 everyone

[LethargicAcid]

hey i live in s.d too lol. 

~4 years HPPD, yes it can get better

[Johan0987]

Hey guys,

Apologies for the extreme late response, i don't visit this forum a lot because it's not very good for my mental health to keep reading about HPPD. Unfortunately i'm worse now than i was when i last posted here. However, i can deal with it a lot better and i think (and learned) spikes are part of HPPD, so i know now this won't last forever and things will get better again. My mindset has improved a lot thanks to therapy and some forum members. Hopefully over the years i will be slowly improving. I'm still on the same treatment as i described before, which makes (HPPD) life a lot easier.

@Gabriel S.D: How u doing now? Any improvements? Adrenaline (or any kind of other stimulants made by the body) can indeed be a trigger, so avoiding stress as much as possible is a good thing to do. Going to the gym is always good for anyone's health and if it triggers HPPD a little bit, i wouldn't give up the gym because of that. Have you experienced exercise makes your symptoms worse?

Edited September 13, 2018 by Johan0987

[Gabriel S.D]

Hi Johan. I'm sorry for your peak, but nice that you can deal with it better now. I hope this peak ends asap!

I'm getting a bit better now, thanks :). I haven't noticed any changes in my symptons related to exercising. I think the atmospheric pressure make some changes in the symptons (less pressure = symptons worse) but I don't know if this was just a coincidence.

[subzero]

@Johan0987 hi . Sorry to hear that and i hope things becoming alot better , btw what medications u r still taking ?

[Johan0987]

@subzero yeah the HPPD is heavy right now. Quite frustrating and depressing because i made very slow progress in slowly building up activities and at some point the visuals didn't bother me that much anymore. Now it's really heavy and it feels like it's 3 steps back in the slow progress i made. But, i'm still not giving up, still trying to live life as normal as possible. I think that's the right mindset, no matter what happens, keep trying to live your life. I think at some point i will find a way to deal with it. Now i definitely can't, but there will come a day that i'm on top of this, i'm sure of that.

The meds i'm on right now are: 1,375mg Clonazepam a day (started on 2mg, very slowly tapering when possible), and 0,050mg Clonidine a day. Also i add Melatonin to sleep better. These (especially the Clonazepam) help to reduce the most heavy symptoms. At some point i have to go off the meds (don't wanna be dependent of benzo's), but right now that's not the right call due to the spike. Also, with HPPD, meds are just a small part of the treatment and i would advice only to go on them if life gets really unbearable (which my life became almost a year ago). The non-meds treatment is the most important you can get (like: acceptance, healthy lifestyle, stress reduction, living life as normal as possible, seeing a psychologist if necessary, etc.)

[subzero]

@Johan0987 you are doing the right things ,I want to inform u that benzos sometime can  worsen your depression temporarily while tapering and that what happened to me so i thought it's the end and i became really suicidal (I was on depressed state which made my feelings about visual worse) . My depression is very manageable these days but my anxiety is high after waking up and it's slowly getting better during the day .

Just now, Johan0987 said:

Clonidine

 This drug is very good for somatic symptoms of anxiety .  I use propranolol 10mg is very good and sometimes it helps me even psychologically 

 

keep going and DON'T GIVE UP

Edited September 20, 2018 by subzero

[Johan0987]

Thanks for the response.

1 hour ago, subzero said:

you are doing the right things

I know, quite frustrating that i've got this massive spike right now but progress was there so i will continue to go forward from where i left off when the spike has passed.

1 hour ago, subzero said:

I want to inform u that benzos sometime can  worsen your depression temporarily while tapering

Thanks for the info, but i don't think i really have a depression. Ofcouse, dealing with heavy HPPD is no fun at all and triggers negative thoughts and sometimes suïcidal thoughts, but i don't feel like i can't enjoy anything or want to do nothing all day.

I definitely know / notice the side-effects and negative effects of the meds, but the positive effects of the meds are at the moment more important to me than the side effects.

One thing i noticed while tapering, was that i got some withdrawal symptoms (feeling like everything is in "autopilot", bit more anxiety, etc.), but that lasts for about 4 days and then i things become "normal" again.

1 hour ago, subzero said:

2 hours ago, Johan0987 said:

Clonidine

 This drug is very good for somatic symptoms of anxiety .  I use propranolol 10mg is very good and sometimes it helps me even psychologically

Yeah i started on Clonidine, and noticed that it made me more calm (or maybe like you say it reduces the somatic symptoms of anxiety). The Clonidine wasn't enough to help me get up from my "crisis" so my psychiatrist added Clonazepam and since then i'm on these meds (in december a year). Still happy to take them at the moment but it would be great if i'm able to come off of them one day.

1 hour ago, subzero said:

keep going and DON'T GIVE UP

Yes, that's the mindset we all should have. I often feel like giving up, but somehow i always manage to get myself together again.

Edited September 20, 2018 by Johan0987

[MadDoc]

Keep going and don't give up.  Wise words.  Just being human is tough in and of itself.  People who don't have hppd struggle to navigate their lives.  What helped me was to admit that I have a disability.  But like the runner who lost a leg, or the artist who is losing their eye sight, all we can do is keep trying.  We just do the best we can.  Get up each day and do it again.  

I realize what I've said is obvious, but it gets me through each day.  

Hang in everyone and take care.

[Johan0987]

3 hours ago, MadDoc said:

What helped me was to admit that I have a disability.  But like the runner who lost a leg, or the artist who is losing their eye sight, all we can do is keep trying.  We just do the best we can.  Get up each day and do it again.

Yes, i think that’s a very good one. I notice that i’m starting to think like that more and more. You can’t do more than the best you can. At first when i had a spike or something else HPPD related, i kept resisting and fighting it. Now i realise that’s pointless, some things happen out of your control and the only thing you can do is try to accept it and deal with it the best way possible. Also, fighting and resisting only cause more stress and negative feelings.

3 hours ago, MadDoc said:

I realize what I've said is obvious, but it gets me through each day.

I don’t think it’s really that obvious. It took me 2 years to get this mindset and although my mindset changed a lot, i think it can improve a lot more because i’m still struggling with my own thoughts etc.

Also, when i read this or other internet channels about HPPD, i often read people just giving up or get angry/depressed about it. The right mindset is the most important thing. It’s hard to get that right and can take years, but it makes the difference between having somewhat of a enjoyable life or a life that’s only about the HPPD.

Also, no one can know what will happen in the future. Maybe you will recover quite good over the years, if you keep trying. Maybe not, but I keep reminding myself that it will get better somehow and that keeps me going also.