Jay1

Welcome to the forum and thanks for sharing your story. I also got a terrible head injury about 6 months into my hppd and often wonder if it affected the hppd or my ability to recover. re: head pressure, i had this for a few years, but it went away after I wore sunglasses almost 24/7 for about a year (note, it might have gone away naturally and the sunglasses were a coincidence)

I know what you mean... it's like micro vibrations of the eye... whether that is a physical thing, or just part of our unfiltered vision is the question. I've always felt like my eyes are making micro vibrations, but the eye doctor has never picked up on anything like that.

Hi V, thanks for sharing your story. What a horrendous event, that you survived that and carved out a life for yourself tells a lot of your mental fortitude. I'm glad you have found this community and finally have found a name for this disorder and people in similar situations. It's a very liberating feeling. I'm sure you will be busy looking through posts on here, learning new coping techniques and possible medication etc... But if you have any specific questions, ask away! All the best, Jay

Yea, used to be 100s per day on here.. I guess they are mainly on Reddit now (Which I found to be a cesspit and had to leave). Glad to hear you still have the energy to keep on fighting and trying other meds, if needed. Would be interesting to see if the sedating effects of clono come back if you do move to a 3 on 3 off approach. I feel like even a 5 on 2 off might be enough of a gap to fend off the worst of the tolerance and withdrawal, as long as the 2 days are in a row and you take the next dose as late in the day as possible. That is purely hypothetical though, so obviously tread carefully if you do try.

Why are you limiting yourself to three meds before giving up? The two meds you have tried have both had some success. Even if the third doesn't, there are a multitude of meds that have helped HPPD sufferers with some degree of success or other. Please keep fighting, Jay.

My view is that is you have to sort of force it to happen by staring and zoning out, it's not hppd. But it does perhaps show you are susceptible to hppd in the future, if you take more drugs. Try not to live with regret about your drug taking... Regret is only useful to stop you doing something again, you've already come to that conclusion, so further regret is just hanging on to negative energy. Try to frame it in a positive way... You experimented with drugs, like most people, and came out of the other side without addiction and with a life lesson learnt.

Welcome to the forum and thanks for sharing your story. Sounds like you are doing everything right already, so hopefully you start to see some improvements over time. Please keep us up to date on your journey.

I find junk food makes me more anxious and just uncomfortable in my own skin. Usually carb heavy. I also feel fresher and more energetic since going on a plant based diet. I think dairy especially causes some issues. Always worth experimenting with your diet.

5htp helped my mood a little, but did nothing for HPPD itself (negative or positive). You can take benzos with HPPD, sure.. I couldn't cope without them. Just be aware of the addiction risk.

You need to be more specific where you are from, i guess... I know the street valium in the uk is cut with all kinds of shit.

I don't think you can even think about a baseline until you are out of withdrawals, tbh. Where you are at now is not your baseline, it's far worse. In many respects, this is probably as bad as it gets for you (hppd wise), which is gonna be tough and hellish for a while to come, but you are also now taking day by day steps to returning to your actual baseline, which should be quite a lot more comfortable and manageable than where you are right now.

I'd say that stress is second only to drugs in terms of making the symptoms permanently worse. People think of stress as just being over worked or whatever, but it comes in many forms and is chemical based. As a severe hppd sufferer, your body will be under more stress than the normal person, no matter what you do. Then when a stressful life event happens, we get even more overloaded with cortisol and adrenaline. Have you ever tried beta blockers? I find they take away some of the psychical symptoms of hppd (they do absolutly nothing for the mental side though).

I have to have a tv on to fall asleep for similar reasons. Having additional light and sound helps me think less about the visuals and focus less on the nonsense my brain tries to make me think about

Mate, calm the fuck down... This is not how we speak to each other on this forum, go to reddit if you wanna act like this. Question, have YOU tried it?

That's fucked up ... I can't even wrap my head around the situation. It's just outright negligence. I hope you are able to get some rest and tackle this again tomorrow.

Very interesting to hear, thanks for posting. Reach out to me if I can be of any assistance.

Man, sounds tough but i'm glad these guys are treating you well and seem to know what they are doing and building a plan of action. You are strong as steel, mate... better times are coming.

How you doing today, my friend?

I think around 15 years now. I generally take between 0.75-1.5mg 3 or 4 consecutive days a week, then have 3-4 consecutive days off. I occasionally have a week on if i'm on vacation. I occasionally also have 2 weeks off, to clean the system. I once had 6 weeks off during lock down to really test any signs of addiction/withdrawal... all was ok. So far, no withdrawals and no noticeable tolerance

I don't know where you are based, but fuck that health care system. It's just such common knowledge that you cannot go from 6mg to zero that you may even have a legal case against them. Hope you are getting the correct help in the hospital. Keep fighting, Jay

I call that stage "pre-hppd", when you can sort of force visuals on by staring at something for a while, but you don't notice the visuals otherwise. It's, imho, the first warning signs from your brain to stop taking drugs. I'd say all the usual rules apply... stay sober, eat well, exercise and try to de-stress in whatever ways work best for you.

I've found there is quite an arrogance amongst the GPs i've discussed HPPD with... They dislike the idea that someone might be more well read about a topic than them and there is also a drug stigma that still prevails. I hope the move to 5mg isn't too rough on you. Keep fighting, Jay

There's every chance he recovered naturally and just carried on the clonazepam for no reason. Clonazepam is a magic bullet for us, but it seems very unlikely to be a cure. Tread carefully.

Surely a doctor knows that you cannot stop cold turkey from 6mg. That's insane. I hope the hospital treat you better. Hope to hear better news. Stay strong.

Hindy, while I understand what you mean, I think it's important for people to say if they are feeling suicidal, so that we can try to help as much as possible. Hall, as you can see by the replies re: meds... Everyone seems to be very different, so best to chat to your doctor and, if you do decide to add another med, taper up very slowly. Keep on fighting, all. Better times will come.