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Can’t handle this much longer


Johan0987

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Hi Guys,

Ive got HPPD since 2015. At first it wasn’t that big of a deal. I noticed some visual snow and that was all about it (and some chronic fatigue, but i could function with it). 

Later on it got worse. I was burned out due to work and that triggered the HPPD to get worse. I became very tired and got head pressures and brain zaps when sleeping. also anxiety became an issue and i was very tired, my brain shut itself down. Then i thought, OK, that can happen. I’m gonna work on recovery and go on with my life. All winter i felt like shit but i managed to get through it and in the summer i was doing better en could work a few days in the week. I remember myself thinking, OK i can make a pretty good recovery.

Last week things got A LOT worse (and i don’t know what triggered it). I felt like i was in a trip again and since then my symptoms got very bad, worse than they’ve ever been.

Visual snow is a lot worse (at first it didn’t bother me). I got way more heavy afterimages, halo’s and trails wich i never experienced before. Head pressure and brain zaps are very bad. Cognitive issues are really bad. Sometimes i feel like i’m on a boat (moving while im actually nog moving). I now also know what dp/dr is like.

It’s just living in hell right now. Well i can better call it survival instead of living.

The only thing that keeps me from freaking out is the clonidine and oxazepam wich i got prescribed.

Bloody hell is this shit ever gonna stop? Just when i was thinking i was nearly recovered (witch took me a year) this happens. I don’t know what to do but i can’t handle this much longer. I’m thinking that i blew my only chance to recovery.

The only hope i have, is that i got an appointment with a doctor who can prescribe me some meds that can help me deal with this, becouse without meds i can’t.

Right now i think my life is over :( how can i ever have a decent life like this? is there anyone with a similar experience who can give me some advice?

Edited by Johan0987
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I've been there many times. I can't tell you how bad my HPPD was even a year and a half ago. I came very close to suicide after fantasizing about it every day for months on end. I truly cannot describe the hell I went through. 

What turned things around for me was realizing what made my HPPD worse. I knew I had certain days and times where it was much worse and after trial and error and endless research and contemplation I figured out that certain foods were exacerbating my symptoms quite a lot from day to day. Nightshades, heavy carb loads, caffeine, stimulants of any kinds, excess glutamate, etc., all made my symptoms worse and still do to this day. I've made many posts about diet and I would highly recommend them to anyone struggling. It might not heal you entirely but it can have a profound impact on just making it through the day. In the meantime you should really try and meditate and talk to someone about your struggles, even if it's a support group or just a family member. You just need to do whatever you can to get through this tough time because it will eventually get better. 

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Hi KB,

Thnx for the reply and advice. How u doing now?

The last year i was doing everything to try to let it heal naturally. I eat healthy, started fitnessing, quit smoking and took it easy on myself to avoid too much stress and burning out again. Also i stopped drinking alcohol and cafeïne. I did meditate but not everyday. Now i’m planning to do a bodyscan at least 2 times a day. 

Everyone keeps telling me that it will get better, but it seems like with me it only gets worse no matter what i do. At the moment i lost motivation to go on. I think eventually that will come back but at the moment i’m having a very hard time.

What are good things to do to get through this? The things i’m thinking about doing:

- taking it very easy and take a lot of rest, only do the basic stuff every day (like showering, eating, workout, taking some walks, meditate, maybe find a hobby or buy a pet. More than doing things like that is too much to handle for my brain right now.

- try to accept the situation right now and try to move on with the steps above. This is going to be hard but maybe eventually i will be able to.

- my therapy sessions are over but there is another route i’m going into. They want to see if there are any meds that can control my symptoms to at least stay stable or maybe calm them down a little bit. Do you have any experience with that? Maybe later on i will go back on therapy to do an acceptance and commitment training.

- talk to other people about it. Last week i told my parents about HPPD and i thought they were going to get angry, but they didn’t and i think they are supporting me. Also i did see a friend who i told everything that happened the last week, he also supported me.

- right now i’m taking a multivitamine and fish oil every day. Don’t know if it will work but it doesn’t have any negative effects so i will try this a few months.

- also i’m taking Clonidine. My doctor said that it can help. At least it helps me to stay calm and it helps for the head pressures and brain zaps. The visuals are still the same or even a bit worse but i don’t know if thats due to the Clonidine. Sometimes i add an oxazepam to help me sleep.

- something else that can help?

The thing that’s killing me mentally, is not knowing how this will end. Will i be doing better in a year? Will i be able to have a job? Or will i be dead becouse i couldn’t handle it no more? (OK right now i will never do that becouse of family and the hope that i eventually will find a way of living with it). I’m trying not to think about this all but it’s very hard.

Thanks for the support! That helps alot.

Edited by Johan0987
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These spikes will come and go... But they will go. You just have to ride them out and, as K.B.Fante said, try to pinpoint the problem that caused the spike. It is usually stress related, for me, but can even be down to weather (low pressure systems seem to spike me up).

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Hi Jay,

Thnx for the reply. Ok i’m gonna convince myself that this spike will go, although i can’t believe it because it’s worse than it’s even been. My doctor told me also that it is temporarily. I guess i got to have more faith that everything will turn out better, but thats very hard after everything that happened to me and all the setbacks i had.

I just came back from a 5km hike with a friend in the woods. Although i felt like a zombie (due to my cognitive issues right now) and the visuals were very hard to ignore, it did make me feel better.

So i think thats what i have to do, stay active but with things that relax me and don’t give me stress. Hopefully some meds can help me (at least to prevent me from losing it). And then slowly try to take some small steps to get my life back together over the next couple of months.

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19 hours ago, Johan0987 said:

Hi KB,

Thnx for the reply and advice. How u doing now?

The last year i was doing everything to try to let it heal naturally. I eat healthy, started fitnessing, quit smoking and took it easy on myself to avoid too much stress and burning out again. Also i stopped drinking alcohol and cafeïne. I did meditate but not everyday. Now i’m planning to do a bodyscan at least 2 times a day. 

Everyone keeps telling me that it will get better, but it seems like with me it only gets worse no matter what i do. At the moment i lost motivation to go on. I think eventually that will come back but at the moment i’m having a very hard time.

What are good things to do to get through this? The things i’m thinking about doing:

- taking it very easy and take a lot of rest, only do the basic stuff every day (like showering, eating, workout, taking some walks, meditate, maybe find a hobby or buy a pet. More than doing things like that is too much to handle for my brain right now.

- try to accept the situation right now and try to move on with the steps above. This is going to be hard but maybe eventually i will be able to.

- my therapy sessions are over but there is another route i’m going into. They want to see if there are any meds that can control my symptoms to at least stay stable or maybe calm them down a little bit. Do you have any experience with that? Maybe later on i will go back on therapy to do an acceptance and commitment training.

- talk to other people about it. Last week i told my parents about HPPD and i thought they were going to get angry, but they didn’t and i think they are supporting me. Also i did see a friend who i told everything that happened the last week, he also supported me.

- right now i’m taking a multivitamine and fish oil every day. Don’t know if it will work but it doesn’t have any negative effects so i will try this a few months.

- also i’m taking Clonidine. My doctor said that it can help. At least it helps me to stay calm and it helps for the head pressures and brain zaps. The visuals are still the same or even a bit worse but i don’t know if thats due to the Clonidine. Sometimes i add an oxazepam to help me sleep.

- something else that can help?

The thing that’s killing me mentally, is not knowing how this will end. Will i be doing better in a year? Will i be able to have a job? Or will i be dead becouse i couldn’t handle it no more? (OK right now i will never do that becouse of family and the hope that i eventually will find a way of living with it). I’m trying not to think about this all but it’s very hard.

Thanks for the support! That helps alot.

Like I said, I've been there and so have many on this forum. In it's severe forms this condition can be absolutely excruciating to cope with on a daily basis. There was a time for about six months in the first year I got HPPD where everything negative in my life came together at the same time and I got very close to ending my own life, but it was then that I realized I hadn't tried everything and that there had to be a solution somewhere to my problem, which I found in natural health. The body is made to regenerate, it's just a matter of giving your body what it needs and staying away from drugs in order to prevent further damage. 

B-vitamins, turmeric, magnesium (taurate is the best for HPPD), passionflower and fish oil (high in DHA) were the supplements that helped me most. They are all beneficial for the body and brain as well. Aside from eating healthy, exercising regularly, meditating, seeing a therapist and all the other standard HPPD healing methods, I think staying busy and setting goals for the future is probably the best thing you can do. The more time you have on your hands the more you'll think about HPPD, the more you'll get depressed and anxious, the more you'll lose hope and so on. HPPD can be dealt with even for life, as Jay well knows, but it takes tremendous will power to accept your condition and keep your life moving so that you don't get into your own head. I've had HPPD for 2.5 years now and am better every day, although I've accepted this will still take years before I'm fully recovered. This condition is slow moving and you have to keep this in mind on a daily basis. You can't think this is going to turn around tomorrow or the next day or the next. You have to start thinking in months and years, and though it's depressing it's also the truth and will help you out in the long run. 

I think meds are OK in certain circumstances and it sounds like you are in one of those. If you're really unstable and thinking about suicide then you should definitely think about taking meds, I just don't know which ones. Jay could probably help you out in this regard.

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15 hours ago, Johan0987 said:

Hi Jay,

Thnx for the reply. Ok i’m gonna convince myself that this spike will go, although i can’t believe it because it’s worse than it’s even been. My doctor told me also that it is temporarily. I guess i got to have more faith that everything will turn out better, but thats very hard after everything that happened to me and all the setbacks i had.

I just came back from a 5km hike with a friend in the woods. Although i felt like a zombie (due to my cognitive issues right now) and the visuals were very hard to ignore, it did make me feel better.

So i think thats what i have to do, stay active but with things that relax me and don’t give me stress. Hopefully some meds can help me (at least to prevent me from losing it). And then slowly try to take some small steps to get my life back together over the next couple of months.

This reminds me: Hiking and spending time outdoors has been probably the single best hobby I've had in coping with HPPD. I've always loved hiking and though it's been more difficult with HPPD Iv'e also never felt worse after hiking than when I set off. There's new science coming to light that says spending time in nature can lift depression and relieve other internal stressors which of course nearly everyone with HPPD has in some form or another. Getting into photography goes hand in hand and can keep you focused while you're hiking as well. 

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Thnx for the response.

I will defenitely see in whats ways i can let my body heal naturally. And i know that it will take a lot of time. It took me a year to recover somewhat and i could live a little bit. Now it’s back and a lot worse than a year ago.

Right now i’m just very frustrated because i’m more fucked up than i’ve ever been (and didn’t know that this condition could get so bad without doing more drugs). My vision is such shit that i can’t relax and watch TV anymore and driving a car (at night) is very hard right now. Also i don’t have the energy to do anything and if i do too much than my condition gets even worse. I can’t think straight anymore so i can’t make the right decisions about my further threatment. My dad has to make these decisions for me. My sleeping patterns are also completely gone. I have to force my body into sleep with melatonin and sometimes a benzo. 

It just completely sucks right now but i guess i have to find a way to deal with that.

Well i’m very unstable at the moment but right now i would never kill myself (although i’ve had some suicidal thoughts in the past week). I defenitely want to go on some meds if they can help me get through this (i’m already on Clonidine wich helps to stay calm and feel a bit more “normal”).

One more question. Since you know really whell wich substances can make this condition worse: do you know if antibiotics can make my condition worse? I think i’m gonna need them for my finger but i’m scared as hell that it will bring me even further into this shit and i defenitely can’t handle that.

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10 hours ago, Jay1 said:

No se conocen antibióticos que tengan efectos notables en hppd.

Hi Jay1,

amoxicillin made me really insane. I could say now I'm good. Not dp/dr, only afterimages if I remember it. I took one pill last year and that sent me to the start of my hppd, start to the fucking hell again. Took almost 1/2 year to feel as I feeling right now. Only my two cents, obviously each person reacts differently.

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Thnx for the reply’s. I just took my 2nd amoxicilline and i did notice that i got some more symptoms that i didn’t experience before but thats also what happened the past week without the antibiotics so it’s hard to tell. My finger really hurts so for now i will continue and if things will become unbearable i will call my doctor. 

I also plan on stopping the clonidine as i think it makes my visuals worse and i want them to get less, and i don’t want 3 different types of meds in my system haha. I hope i can manage it without the med. If not, then i have some good old benzo’s but i dont’t want to take them too often and risk getting dependent. Melatonin for sleep seems to work good for now.

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Hi Johan.  When I was first struggling with this disorder I attributed anything and everything as a trigger.  Over time I realized that the stress of thinking about some medication, food, or activity was actually the culprit.  There certainly are some foods and medications that can cause issues but these generally contain something like cafeine, dxm, nicotine, or a heap of sugar.  Everyone is different though.  The fact that you're here and the fact that you want to be well and move forward with your life are excellent first steps.  There are some in here who have recovered.  There are others, like me, who have adapted. Life with hppd can be productive and wonderful.  I mean that.  Hang in there.

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Thnx for the reply.

Well i obviously have to recover somewhat because right now i just can’t be productive. And i know that’s possible because i did it before. The only thing i’m really worried about is my vision, if this doesn’t go back to how it was a few weeks ago then i’m having a BIG problem.

A full recovery would be great but i’m not expecting that. I just want to be stable and be ready to go on with my life. I hope that this spike will go, because a few weeks ago i was doing pretty good and i was working 2 days a week. Right now i can’t even think about going to work. Everything seems different now.

I realised that with everything i do or put into my body i have to check how it affects me. Maybe if i can find some patterns and adjust to these then my symptoms will calm down again to the way it was.

Edited by Johan0987
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It's almost 2 weeks ago since i've posted my last post here. I want to give an update so i can tell my story and maybe you will find it interesting regarding my pretty desperate openingspost.

Well, i'm doing a little bit better since the worsening. When i got the HPPD "attack" i lost myself completely. I just couldn't recognize myself in the way i was thinking and how i was behaving. I had very bad cognitive issues, my visuals were worse than they've ever been. Like said before, i felt like a zombie.

I'm still having a very hard time at the moment but also i'm doing a little bit better. Things i've done to help myself right now:

- Taking clonidine 3 times a day like my doc prescribed me. It helps a lot for anxiety, panic and helps me cope overall. The visuals are still the same with clonidine.
- Taking melatonin at night so i fall asleep directly when i'm in bed. This helps so i don't think about it when trying to sleep so at least i can have a good night of sleep. I start to notice that it maybe makes my visuals worse. I'm still undecided if i will take this any longer, because without it i just can't sleep right now.
- Taking some walks in nature with a friend, and afterwards we will have some lunch at a restaurant. This makes me feel better and more relaxed.
- Take a lot of rest
- I have worked for 3 hours yesterday. I think it worked out pretty well. I felt more "normal" during the time i was working. Although any longer than 3 hours was too much to handle for me right now. But i will see this positively because it is a small step forward.
- Trying to live as normal as possible. This is very hard but i think this is a very important factor in the recovery / coping process. I just came back from a restaurant with my family and i had a good time without suffering too much, so that's also a good thing.
- Talking to my GP and psychotherapist about this all. I maybe will see a psychiatrist in a few weeks so i have a little hope, but when i think more realistic, i don't think he can help me either. I don't think i want to go on heavy meds (like SSRI or lamotrigine, too scared that they will fuck me up even more, or the withdrawal will fuck me up). Some docs want me to go on SSRI's. Maybe it will help, but i've had an negative experience with L-tryptophan (made HPPD worse and was acting weird on that), so i'm scared that it will make things worse.

Improvements:
- Anxiety / panic is gone (i think due to the meds)
- Cognitive issues are a bit better
- A little bit more energy
- I can handle everyday life a bit better now

These are the good things, i try to focus on that but mentally i'm pretty fucked up. Things are just not looking good for me right now so i noticed i'm getting pretty depressed (with sometimes suïcidal thoughts) in the past few weeks. I just can't see the good things in my life anymore. It's a constant battle that lasts for a year now and i'm done fighting. Nothing seems to really help to improve my condition, and just when i thought i was recovered pretty good, my HPPD gets worse than it's ever been. My motivation to go on is pretty much gone. I really can use some positive news but that doesn't seem to happen.

So that's pretty much it for now. Some very little improvements but in the big picture it just sucks...

P.S. Oh, and the antibiotics didn’t seen to make it worse!

Edited by Johan0987
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Ok, another update.

I completely lost it today. I went to work and the visuals were so intense that it drove me crazy. I was also so tired and had very bad brain fog, i couldn’t handle the day.

On my way back home i thought about my situation and it made me extremely sad. At home i started crying (wich i haven’t done for years). I just can’t handle another day of this shit. I feel so lost and hopeless. I let myself down, see my parents suffering due to my situation, my life is ruïned and i don’t see a way to make it right anymore.

I just hope that i can make it right again and get a second chance. I was on my way but i messed up. Are there any people here who relapsed this bad and made it right again?

I called my GP today and explained that my situation is unbearable. I can’t control myself to stay calm or at least try to enjoy the things i do. I get confronted every second of the day and for that reason i can’t stop thinking about all the shit thats going on in my life.

My GP decided to send me to a psychiatrist with emergeny. I hope that will help me, maybe with some meds to calm down the symptoms so i can make it through the day again. And then try to make things right again 

What meds can be helpful? I don’t want to get on SSRI’s because i think it’s gonna make me trip even more. I need something that calms down my brain. Personally i’m thinking:

- keppra / lamical worth a shot?

- benzo’s maybe klonopin?

- anything else that can be helpful to help me through this?

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  • 6 months later...

Hi Guys,

i just woke up and started thinking about this forum. Since my relapse/worsening in november 2017 i didn’t visit this forum a lot anymore because it isn’t very good for my mental health. I’m trying to focus as less as possible on the HPPD.

But this morning i thought that i at least could give an update about how i’m doing now, since some members have helped me a lot.

Well, compared to november 2017 (see posts above) i’m doing a lot better. On the other side i still have a long way to go because my symptoms are still quite severe (but have lessened a bit) and are hard to deal with from day to day. My HPPD is a disability right now because i can’t do the same stuff as “healthy” people are doing.

Lets start with my symptoms right now:

- pretty bad visual snow, in daytime not very noticable but in dark situations it’s pretty heavy. It’s like there is a layer of VS before my normal vision. I can handle it but it’s sometimes hard to deal with.

- trails when looking at fast movements (like waving hands, a phone screen waving before my eyes gives a light trail, etc.). Also pretty long afterimages when i look directly into a light source (like more than a minute or so). Sometimes in notice a bit of floaters but it isn’t that bad. These symptoms have improved a bit and i’ve gotten used to it so it isn’t a very big deal anymore.

- sometimes my entire vision looks “too bright”. Don’t know if that’s DR but when that happens i feel a bit disconnected. This symptom is very hard to deal with. Luckily this doesn’t happen very often because i would go crazy if this was permanent.

- head pressures and brain zaps. Are often not noticeable anymore but when i have a busy day or week these come back.

- some brain fog / cognitive issues / fatigue. Especially my memory is not very good. It has improved so i’m hoping it will slowly get better.

- quite severe anxiety, but on the other side i’m able to deal with the anxiety a lot better due to my coaching and the meds i’m on right now.

I think that’s about it. Due to all these symptomps, it’s a disability and i can’t do a fulltime job now because my symptoms get worse when i have a too busy day or week. When that happens they get better in de next couple of days but it’s really looking for a good balance in work / socialising / rest.

I think i also have found the best treatment possible in the Netherlands.

- i visit a psychologist once every 2 weeks to help me deal with the HPPD and slowly building up my life again. I now can work 2 mornings a week and deliver good quality work. This feels good and i’m hoping i will be able to work more in the future.

- in the same clinic as the psychologist, there is a psychiatrist who prescribes me meds to help deal with the HPPD and anxiety. This psychiatrist is advised by HPPD specialist dr. Alderliefste. Meds i’m on right now: 2x Clonidine a day, 3x Clonazepam (Klonopin) a day. I’m tapering the Klonopin very slowly (over a lot of months), because it’s helping me pretty good but i can’t stay on this med for the rest of my life.

- sometimes i have direct contact with HPPD specialist dr. Alderliefste. He’s helping me very good (the best way possible), mostly he advises me what to do.

now the most interesting part: like the most of you guys, i had an MRI scan from my brain to check if there is no other cause for the symptoms. As expected, the result from the MRI scan was good and there were no abnormality’s.

With this result i am sent to a hospital connected to a university, where neurologists are researching and studying visual snow / HPPD. Dr. Alderliefste also helps and supports this research. When everything goes to plan, i will see a neurologist there (with knowledge of VS / HPPD). He will medicly examinate me and hopefully can give advise on optimising my treatment. Also there is a possibility for me to help the research / study as a patient.

So i’m very curious about how this will work out, and if the doctors understand whats happening in my / our brains. I definitely will keep you guys updated if there is any interresting information to share.

Well, that was quite a story to write. Overall i’m doing / dealing a lot better, but there is a long way to go. Hope you guys are also doing OK! Looking forward to the responses.

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  • 5 weeks later...

Hi Gabriel,

Thanks for the response. I don’t think i can call it recovering because the symptoms are still quite severe (they have lessened a bit but there are triggers that can make it wore again). On the other hand, the way i’m dealing with it is a lot better. Of course, i’m hoping the symptoms wil subside over the years, because thats what happens to a lot of people with HPPD (of course, everyone and every case is different).

How severe is your HPPD? The best tips i can give you:

- go to a doctor/psychiatrist who is familiar with HPPD. They can help you to get better. What country are you from? Maybe i can help you to get in touch with a good doc.

- stop doing all kinds of drugs, including cafeïne, nicotine and all other substances. Even substances that raise serotoinin levels are a trigger.

- start living as healty as possible. Exersise, healthy food, a good sleep pattern, do lots of social stuff and things you like to do. The more you keep yourself busy, the less you think about it.

- this can be a hard one: try to live your life as normal as possible, as like you don’t have HPPD at all. Yesterday i went to a festival for the first time in a long time. I was quite anxious before, and when we were there i felt a bit “uncomfortable” in the beginning (maybe that was a bit of DR). But the longer i was there, the more i started enjoying myself and the more i felt “normal”. The more you challenge yourself with these kind of situations, the easier it gets over time.

- start figuring out what makes you feel better and what doesn’t. This helped me quite a lot to find a good week schedule that works for me right now, i have a good balance between work, socialising/hobby’s and rest.

- the last and maybe the best to remember: HPPD can be a very hard disorder to deal with, but it gets better with almost everyone. You get used to the symptoms and deal with it, or in the best case, you will recover quite good. I remember myself often when i’m feeling down, that there are a lot of people with a lot worse (mental)health conditions than mine, and they can deal with it as well.

If you ever need advice or someone to talk to, send me a PM. We’ve also created a FB group for dutch people with HPPD where we share info and support each other. https://www.facebook.com/groups/HPPDNederland

I hope this will help you even further.

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Brother, know how you feel.

Been there.

Got 95% back using chlorine dioxide, also known as MMS. And improving every day. I feel i will be back 100% .

By now, i can say im functional and recovered.

You can check out about MMS in the webpage of the discoverer, Jim Humble, Jim Humble.is .

You have to take it according to some instructions tho, so it can work.

I watch some testimonies about MMS reverse autism, parkinson, alzheimer, arthereosclerosis, and depresion whith success. So maybe it has somethig to do with all that and hppd.

I just tried it in a desperate attempt of improving my situation somehow. And it worked!!

I mean, i had not heard any time before anyone using it for hppd before i just gave it a try.

So I registered myself here, and telling this to see if other people that may take it recover.

Im really curious because i do really feel this might be somethig big.

I was pretty much disfuctional. 

I couldnt sleep for a month and a half, and was trippin all the time. And by tripping , i mean tripping. No kidding.

And it was not just tracers and yabba daba lala hppd. It was thought tripping, and time perception tripping, and having lsd thoughts and sensations all the time and feeling how my body was at the brink of disintegratiing and I felt like in any moment i will have a ego death and felt like i was gonna die. And derealization depersonalization and desesperatnes, and thinking i will never come back. And dont ask about the risk factor of visiting a psychiatrist,  he being a douche bag, discsrding the possibility of hppd, and giving me antipsychotinc and mood stabilizer meds right ahead. Thank god i didnt took any of these. If I did i pretty much know i would be cronifyed. 

And from that, to be almost back to normal... Man ! That something really worth looking into! Its a fucking miracle.

 

Hope you get well soon. Check out about all of these and hope it helps you out

 

Peace brother!

 

 

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Thanks for the response,

I didn't hear about MMS or chlorine dioxide, also never for treatment of HPPD. I will share this with my (HPPD specialised) doc, maybe he can research this for optimising his treatment. I did hear about Kratom from another former HPPD'er, he is also very positive about this supplement. Maybe will give it a shot someday.

My HPPD is a lot different than you are discribing, i just have a lot of visuals, brain zaps, anxiety, head pressures, sometimes flashbacks, sometimes DR, etc. I (luckily) do not have the feeling that i'm constantly tripping. That must have been a very bad experience. About your experiences with a psychiatrist: a psychiatrist can definitely help but you have to find one that is familiar with treating HPPD or is willing to do research into HPPD (mine is..). From what i hear, a lot of meds are prescribed to HPPD'ers that just make things worse. Luckily, i live in the Netherlands where there are docs who have experience with HPPD, and can help to find the right treatment (meds are only 10% of the treatment).

For now i will stick to my current medical treatment with Klonopin and Clonidine, as i know this works (somewhat) to ease the symptoms and feel "normal". I'm making very slow progress, but progress is there so i'm hoping i will be 100% funtional over time again. Maybe someday i will try the MMS stuff, but for now i'm happy with the meds i'm on now.

Thanks a lot for sharing this info! That will definitely help in my personal treatment but also in the research by some docs in the Netherlands.

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Great glad to hear!

 

Doctors might feel confused to hear about it.

All in all MMS is chlorine dioxide, wich is a water soluble gas used for water disinfection. And other industry applications

So go figure hows that something like this help with hppd right?

It will help only if you take it according to some instructions, disguised in the  mms health and recovery guidebood, you can google it. Just letting you know.

Let me know what happens!

Greetings from Spain!

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I've sent your post directly to my doc, so very likely he will reply within a week. I can't explain why it would help with HPPD, the only thing i know is that every HPPD case can be very different and different people react very differently to meds and supplements. So i only take meds with care and we (my docs an I) are thinking every step i take through.

Thanks a lot for sharing and greetings from the Netherlands!

Edited by Johan0987
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On 7/1/2018 at 6:13 AM, Johan0987 said:

Hi Gabriel,

Thanks for the response. I don’t think i can call it recovering because the symptoms are still quite severe (they have lessened a bit but there are triggers that can make it wore again). On the other hand, the way i’m dealing with it is a lot better. Of course, i’m hoping the symptoms wil subside over the years, because thats what happens to a lot of people with HPPD (of course, everyone and every case is different).

How severe is your HPPD? The best tips i can give you:

- go to a doctor/psychiatrist who is familiar with HPPD. They can help you to get better. What country are you from? Maybe i can help you to get in touch with a good doc.

- stop doing all kinds of drugs, including cafeïne, nicotine and all other substances. Even substances that raise serotoinin levels are a trigger.

- start living as healty as possible. Exersise, healthy food, a good sleep pattern, do lots of social stuff and things you like to do. The more you keep yourself busy, the less you think about it.

- this can be a hard one: try to live your life as normal as possible, as like you don’t have HPPD at all. Yesterday i went to a festival for the first time in a long time. I was quite anxious before, and when we were there i felt a bit “uncomfortable” in the beginning (maybe that was a bit of DR). But the longer i was there, the more i started enjoying myself and the more i felt “normal”. The more you challenge yourself with these kind of situations, the easier it gets over time.

- start figuring out what makes you feel better and what doesn’t. This helped me quite a lot to find a good week schedule that works for me right now, i have a good balance between work, socialising/hobby’s and rest.

- the last and maybe the best to remember: HPPD can be a very hard disorder to deal with, but it gets better with almost everyone. You get used to the symptoms and deal with it, or in the best case, you will recover quite good. I remember myself often when i’m feeling down, that there are a lot of people with a lot worse (mental)health conditions than mine, and they can deal with it as well.

If you ever need advice or someone to talk to, send me a PM. We’ve also created a FB group for dutch people with HPPD where we share info and support each other. https://www.facebook.com/groups/HPPDNederland

I hope this will help you even further.

Hi Johan, sorry for late reply haha 

Actually my hppd isn't that bad, it's most noticeable when I have to sleep for example, the simptoms gets more appearent (mainly the tinnitus) or when I'm in bright places and snow visual gets more intense, including photofobia and afterimages. There's also some strange symptons that appears suddenly sometimes. But the good part is that most of the symptoms already disappeared (like head tingling and DR).
I think I'm eating healthier than before the hppd, there's a lot of foods that are triggers like gluten, nightshades, heavy carbs. The part of drugs, yeah, I think I'll never use any drugs again (just medicines). I used to drink coffe twice a week but I stopped when hppd came.

And bro I've some questions, do you take thiamine? I saw some people telling it helps a lot, I started taking it Friday, I'll see the results. What are your main triggers? Do you make any special diet (like keto diet)?

Anyway, thank you so much for all tips! (sorry 4 bad english haha)

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