Johan0987

Can’t handle this much longer

13 posts in this topic

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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Antibiotics are not known to have any noticeable effects on hppd.

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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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