Has anyone's dpdr and/or brain fog gotten better?

[jas]

Whether with medication or time. Need some hope

[AF44]

Hello,

Don’t give up hope. I’ve had HPPD since about 20 and I am now 45. At first the DP/DR was so bad it was worse than the visual stuff. As time went on, it lessened but I would still get it, not quite as intense though.  Medication-wise, I have been taking Klonopin for about 14 years which pretty much took a ton of my symptoms away, especially the DP/DR. However, I honestly don’t recommend trying to be on it. On this forum I was touting it because it was a miracle drug when it came to the HPPD. But now I’m wary about encouraging people to try it. I think I was excited to tell everyone here that the Klonopin worked really well. I had good intentions, but didn’t really think it through. For one, since it is a controlled substance, it is really hard to get a script for it. If someone will prescribe it, they will usually only give you a small amount. It was different back then. (Back in “my day” haha, I’m old!) A neurologist who was really skeptical that HPPD was a real thing was willing to put his doubts aside enough to Rx me Klonopin to take daily. I received it through my primary care dr every 6 months, then checked in with her, then she would continue to prescribe it. I was asked to see a different neurologist for an opinion (or something) and that neurologist said yes, I can take continue to take it each day. I then began seeing a therapist at a mental health clinic. He didn’t really do therapy because he was the administrator of the clinic, but he was so intrigued by my case he wanted to take me on as a patient and record me talking about my condition. The first thing he did when he walked in was slap a bunch of papers down (info on HPPD) and said yep, you can take Klonopin for the rest of your life because it is not a harmful drug. (Nowadays they say it is harmful because it’s addictive and people misuse it and it can bring on early dementia. Like, thanks people for ruining it for the rest of us!) I’m rambling but to sum it up, I have been taking Klonopin every single day for 14 years. However, since a lot of doctors are skittish about prescribing it, it would be difficult to get. Also, getting off of it (let’s say, for example, my pdoc decides not to prescribe it anymore, or I get another one who won’t prescribe it) the withdrawals are horrible even if you don’t have HPPD and if done incorrectly, you could literally die from it. If you DO have HPPD, it will come back a millionfold and you will wish you had never taken it in the first place. So each month I live in fear that someone will make me get off of it. So it was worth it but not worth it. I think you should just give it time and the DP/DR will lessen. As far as other medication, I have heard that lamotrigine is promising, and also Clonidine. Maybe you could try that. I’m sorry for rambling on and on. I do this every time I get on here. I lose track and then suddenly I’m like, wait, what was the question? I probably could have condensed this whole thing into like 2 paragraphs. But hopefully maybe I helped a little bit.