Jump to content

Ghormeh Sabzi

Administrators
  • Posts

    466
  • Joined

  • Last visited

  • Days Won

    13

Everything posted by Ghormeh Sabzi

  1. I may as well report here that I recently tried Sinemet and it did not provide any symptom relief that I noticed. I was on 12.5/50 three times a day.
  2. I actually agree with a lot of this second post and it is similar to my outlook, even though I don't think it is completely relevant to your original post in relation to being a guinea pig for medications. I can totally understand why people would want to be really careful what they put in their body after acquiring HPPD. Back to the subject of the thread - I'd also be interested to see evidence of 5HT2a antagonists making symptoms worse. We've all read about the agonists making things worse but I've not yet seen any reports of antagonists doing the same. I'm not even sure how many people have tried antagonists. Anyone tried pizotifen? I know one person has: http://hppdonline.com/index.php?/topic/888-70-95-reduction-of-symptoms-keppraflunarizine/?hl=pizotifen
  3. I think you're being completely unfair there. I say well done to those of have learnt from their past mistakes and now are being very careful what they put into their body in case they make things worse, either temporarily, or permanently. I also salute those who are willing to take a few risks for the benefit of the community. There are are also limiting factors such as access to open doctors and financial constraints. There is no right or wrong way to tackle this disorder. Everyone makes their own decisions and different things will work for different people.
  4. Where's the thread where you posted about canchew? I can't find it.
  5. I may be interested in giving this a go at some point for pain relief if I cannot get relief from other avenues. I would only be interested in stuff that contains trace amounts of THC as I am not willing to risk worsening my symptoms. I am also slightly concerned that it can activate 5ht1a receptors. I'm not sure about others (specifically 5ht2a). There are also questions about legality - although there are UK based websites which sell it. In fact, you can get a free trail from this one: http://www.medivape.org/freetrial.html I prefer the sound of the canchew, however! They would be preferable to a vaporizer, personally. They look more legit, too.
  6. I withdrew on Keppra at 250mg per week without problems. You should try as few things as possible at the same time. You've got to be patient mate! Does the new stuff look/smell different from the first batch?
  7. If only ... I was thinking of trying it myself for some pain I experience.
  8. Sounds ... positive. I've got another one for you to consider later on perhaps: http://hppdonline.com/index.php?/topic/2261-tiagabine/
  9. If you start at 25mg and go up 25mg each week the possibility of side effects will be lower. Reports suggest it may take months for lamotrigine to work and so you'll have to be patient anyway! If you haven't started yet then you can probably replace it quite easily if you take it back. I would personally not try too many things at once. Aside from limited data of interactions, if you try too much at once it may be difficult to tell what is doing what. Your basic vitamins and supplements would be fine I'm sure.
  10. Probably not the miracle cure but could prove useful to some. http://en.wikipedia.org/wiki/Tiagabine
  11. This is a great find! Thanks for posting it. It gives a brief description of HPPD and studies to date as well. How did you come across it? Lots of people are after a quick fix and lamotrigine takes a long time to work - so that might be why some are not too keen to give it ago. That along with its potentially serious side effects. But it is a consideration - especially since there are recent reports of improvements of symptoms on the visual snow Facebook group.
  12. Qaiphyx - your arrogance is unrelenting. As far as I can tell we haven't determined anything yet because your theories are, well, theories. Yes, we can certainly achieve a lot as amateurs if we work together (which doesn't include being rude to other members). But there is also something called the 'scientific process' to follow, which does not allow one person to state what they think causes HPPD and pass it off as fact based on a few scribbles and links on an internet forum.
  13. The Keppra study is indeed a bit dodgy - but it is also useful if you want to get it prescribed. Lamotrigine is an interesting med and I'd like to possibly give it a go - although the side effects are a little off-putting. Although apparently they are more common in women. A few on the visual snow Facebook group have tried it with some success. Unfortunately it's similar to Keppra in that it can take a long time to work, with some people saying it takes many months. So you'd probably need 6 - 12 months to know for sure if it helps. I suspect most people who try it only do so for a very short period of time, and so we probably do not truly know how good it is at treating visual snow syndrome and/or HPPD.
  14. 1. Are you saying are you having moments where you are completely free from DP? 2. What do you mean by 'substantial visual improvements'? Is there improvement in visual snow and afterimages or any other typical HPPD symptoms, or are you talking about non-standard visual improvements such as clarity, depth perception, contrast, etc?
  15. Hang in there for better days. There's not always a lot we can do to help but we're here to listen and sometimes getting it off your chest does help somewhat. There's some good advice contained in a previous, related thread: http://hppdonline.com/index.php?/topic/2143-suicidal-thoughts/ Sometimes it can be difficult to talk to people you know or people face-to-face. Maybe it might be worth calling a number where you can remain anonymous and get things out of your system? Samaritans in the UK and known to provide a good service for that sort of thing and you can call them from anywhere (I don't know where you are located). There might be similar services located closer to home.
  16. http://www.longecity.org/forum/topic/58609-coluracetam-user-feedback/
  17. I suspect the posts can be recovered - just a few things settings probably need to be tweeked in the back-end of the site. Hopefully that will be done at some point because as it stands we've lost a lot of really useful content.
  18. English version: http://www.stopacne.nl/en/coluracetam.html Anyways - good luck!
  19. He might let you try the Sinemet/Tolcapone mix (one day trial) which would be good. Whilst I have Sinemet prescribed I doubt anyone would be willing to prescribe me Tolocapone which would be more useful as a trial.
  20. If it helps, it doesn't much like Parkinson's to me. Obviously a neurologist would be able to advise better. There are certain things you can take for diagnostic purposes such as Sinemet (which I have recently started taking for the dystonia (and HPPD!) - but which has not helped.
  21. RLS has nothing do to with anxiety. It is an irresistible urge to move your legs and you do not feel comfortable until you do so. It's not your normal shaking your legs which a lot of people do - it's a conscious decision to move your legs (or other body parts) to feel comfortable again. It can be related to dopamine / iron and indeed some people with Parkinson's get it. I don't have RLS but I did research it a year and a half ago in my quest to understand what was causing pain in my buttocks / thighs. It doesn't sound like anyone in this thread has RLS to me (I have only skimmed the thread). I have been told I have dystonia - maybe look into that disguyhere (although my situation does sound different to yours). For me it is unrelated to stress or anxiety (unless triggered by them) and occurred shortly after all my other HPPD symptoms. I have a twitchy tremor, a constant muscle spasm in my left hand (hasn't stopped in 1.5 years) and certain body parts shake uncontrollably when placed in certain positions (if I move my mouth to my cheek for example the whole area just starts shaking).
  22. Levetiracetam definitely helps with sleep. I noticed this whilst I was on it and I also noticed it was difficult to sleep for a while after I came off it. Personally, melatonin did not help me sleep, although it did make me feel drowsy the next day!
  23. PLEASE do not take mushrooms. There is every chance it could make your symptoms worse. This site is full of people who had mild HPPD, took more drugs, and then had their HPPD become a whole lot worse. It's not worth the risk - just avoid drugs - please.
  24. Seriously guys, this is still running? Maybe you should both just ... stop replying to each other. I don't see the benefit in continuing the argument. One of the great things about this forum is that everyone (mostly) gets along and works together. The same cannot be said of other forums. We are the 'druggies' yet the maturity levels on this forum seem a lot higher than the visual snow groups.
×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.