Gustav

Members
  • Content count

    9
  • Joined

  • Last visited

Community Reputation

0 Neutral

About Gustav

  • Rank
    New Member
  1. Hello! My clonozepam have stopped working completely. And i can't see a thing without medications. So recently i got valproate. I take 3000mg/day which is a huge dose. I also take Lamictal 200mg 3x a day. I know this is incredible dangerous. But what should i do? I'm out of options. I have tried basicly every medication on the market. Can somebody give me advise. Thanks
  2. Hello Recently i have had this thought in my head. In high doses of benzo (5mg or more) i become basicly symptom free. I haven't done this before doe because of tolerance issues and so on. But imagine if our brain become so "normal" trough high doses of benzo that it would actually rewire the brain to it's normal state? I don't know if anybody have tried this but i see it like a form of healing. The brain is amazing and in almost every cases want to go back to it's "normal" state. And maybe this could give our brain a chance to actually heal itself. Just a thought.
  3. So as you all know when GABAA goes up = glutamate goes up to compensate. For me, Lamictal dosn't do verry much to my visuals. But however klonopin does a mayor deal for my visuals. And for many other here from what i've read. What Lamictal and Tegretol does is that both drugs inhibit glutamate release which could be verry usefull if you use benzo because as i said when GABAA goes up = glutamate goes up. But i was thinking if you use both benzo and Lamictal and Tegretol (haven't tried Tegretol yet, but it has the same mechanism as Lamictal), you should be able to get as much GABAA in the brain as possible and knock out this compensation "system" or atleast slow it down. I see it like basicly a brake pedal for benzo tolerance as it inhibit glutamate release. Any thoughts on this?
  4. I've also talked with this clinic. They have had great succés with treating HPPD and VS cases at their clinic. It's expensive but even if they can reduce my symptoms with 50% it's worth it. I'm just hoping they will be able to target the right area.
  5. Exactly, desperate times need desperate measures. For the actual brain surgery i think they could verry well target the area using QEEG or PET-scan. Neurofeedback is great too. I'm actually going to London in March for a meeting with Dr Goadsby (the VS research leader) so i'm thinking about trying neurofeedback as i'm there. I know a clinic in London that have treated many HPPD cases and VS cases with great results so why not. It costs but if it even can reduce my symtoms with 50% it's worth it. I just hope they will be able to target the right area if i do the treatment.
  6. Indeed, verry intressing stuff. I can litteraly don't go one day without clonozepam because my symptoms are so freaking extreme. My visual snow actually makes my visual acuity really bad without clonozepam. That's how bad it is. I have the whole package of other HPPD symtoms aswell but nothing is worse then the snow. I thought Lamictal had reduced my snow a couple of days ago but i soon realised that it was just the clonozepam effect that didn't had vanished yet. As for Flumazenil i'm trying to get a treatment in Sweden to try and reverse my tolerance or atleast stop it. I don't know now if i'm gonna get the treatment but at this point i'm willing to try anything. It's intressing because Dr Goadsby (the leader of the Visual Snow research) requested money for Flumazenil and diazepam for a treatment trial in 2015 from the NHS but was rejected. So i really think we are on to something big here. I actually have a meeting in London with Dr Goadsby in March so i'm hoping to discuss this further with him. If the health care in Sweden don't give me Flumazenil i'm going to travel abroad to USA and do the treatment at the "The Coleman Institute". It cost verry much (6000$) but it has a 98% succés rate and as i said earlier i'm willing to try anything at this point. I have even requested a brain surgery from the health care in Sweden (deep brain stimulation) to solve my vision problems. DBS is verry frequantly used for many diseases in Sweden so if Flumazenil dosn't work out i'm hoping for a DBS.
  7. Hello! I've been on klonopin for 6 months now. It helps with frame rate problems in high doses (over 4mg/day) but i have never wanted to go so high. It also have helped me greatly with the visual snow and basicly reduced all my visual problems. But in November i started to devolop tolerance so i have quit the klonopin after 6 months on 2mg/daily. So now i'm on Lamictal 450mg/day that greatly reduces my visual snow,BFEP and negative afterimages. I will increase my dose soon and see if more positive things happends. But i still have much problems with frame rate problems, positive afterimages and tracers. So now i'm thinking of adding medications to my Lamictal such as Sinemet and Tegretol. I've heard good things about Sinemet when it comes to positive afterimages, tracers and also that it makes the vision much smoother. I've heard some good things about Tegretol too. Somebody that have tried this medications and had good results? I would verry much apreciate some help regarding this because it's a big problem for me. Thanks
  8. Hello! I know that alot of people here going on benzos. Especielly clonozepam. Clonozepam worked wonders for me on a daily basis 2mg/day untill i devoloped tolerance after 6 months. And that's the main problem with benzos. Tolerance. But how do we solve tolerance then? Well, i've been looking at a GABAA-antagonist called Flumazenil. And there is some pretty intressing facts about flumazenil on Wikipedia. https://en.m.wikipedia.org/wiki/Flumazenil I will quote some of them: "Epileptic patients who have become tolerant to the anti-seizure effects of the benzodiazepine clonazepam became seizure-free for several days after treatment with 1.5 mg flumazenil. Similarly, patients who were dependent on high doses of benzodiazepines (median dosage 333 mg diazepam-equivalent) were able to be stabilised on a low dose of clonazepam after 7–8 days of treatment with flumazenil." "Laboratory research studies using tissue cultured cell lines have shown enhancement of the benzodiazepine binding site after chronic treatment with flumazenil where sites have become more numerous and uncoupling/down-regulation of GABAA has been reversed. After long-term exposure to benzodiazepines, GABAA receptors become down-regulated and uncoupled. Growth of new receptors and recoupling after prolonged flumazenil exposure has also been observed. It is thought this may be due to increased synthesis of receptor proteins." "In Italy, the gold standard for treatment of high-dose benzodiazepine dependency is 8–10 days of low dose, slow infusion of flumazenil.[12] One addiction treatment centre in Italy has used flumazenil to treat over 300 patients who were dependent on high doses of benzodiazepines (up to 70 times higher than conventionally prescribed) with doctors being one of their most common patients." So basicly what Flumazenil does is to reverse the tolerance. Also growth of new receptors have been observed which i find verry intressing. I know this haven't been discussed on this forum before so my generaly question is really, have anybody tried Flumazenil? And if not, do you think this could be a way to use benzo for a long term treatment of HPPD?
  9. Hello everybody! I'm verry glad to see this forum finally being active again. I have tried to register for months but never got a confirmation email untill now. But what i would like to talk about is deep brain stimulation. I know brain surgery sounds scary and risky at first. But after testing a bunch of different anti-seizure medications i'm absolutely sure our visual disturbances is related to constant overactivity in our visual cortex. I have also been talking to people recently that have done neurofeedback and i know one guy in particular that's after his sessions have been completely symtom free after some of his sessions. I would like to compare deep brain stimulation as a permanent neurofeedback session but with more accuracy and better chances of being permanent cured. I've gonna suggest this to my neuro in the following weeks and see what he has to say. I'm currently doing bunch of brain scans. And if we are able to find the exact area to cut i would do the treatment in a hearthbeat. I know this have been discussed before on this forum but a long time ago. What are your thoughts now? Do you see this as a solution to this hell? I'm verry intressed about hearing what other people think. All the best//Gustav