Ghormeh Sabzi

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Ghormeh Sabzi last won the day on December 22 2016

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About Ghormeh Sabzi

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  1. This forum was down when my symptoms first presented themselves. I wish I had the warnings others are lucky enough to get. I had comparatively minor symptoms of just visual snow and BFEP at first. I continued to occasionally smoke weed and take MDMA (I was never a big user), as well as drink a lot of alcohol. I cannot be sure what caused the spike but a few months later I developed a whole variety of other visual and non-visual symptoms. At the time I felt very ill. I then ceased all drugs (including alcohol), and tried to live as healthy as I could. Over a few months I recovered fully from some non-visual symptoms (e.g. head pressure, severe headaches, some trippy feelings that are hard to explain). I was then left with residual visual symptoms and some non-visual symptoms such as fasciculations, chronic pain and minor tinnitus. By steering well clear of all drugs, these symptoms have remained stable for several years and by taking Keppra I have mostly eliminated the pain as a factor. At my worst, I was unable to function at all. My life would have been a shambles. I am now able to mostly live as someone who does not have HPPD. The fear of being put back into a situation where I am not function and would not be able to achieve my life goals completely eliminates any desire I have to take drugs ever again in my life.
  2. If you have had HPPD, then you have a genetic predisposition to the disorder. If you are in remission you are not cured because you still have the same genetic predisposition which allowed you to get HPPD in the first place. If you know you have a genetic predisposition (everyone on this forum does), then the only sensible choice is to avoid drugs for the rest of your life. Especially drugs which, time and time again, users have reported as worsening symptoms permanently. Just because you are fine after one use does not mean you will be fine after the next use. If you cannot resist the urge to continue to take drugs then you should seek professional help.
  3. I am of the opinion that opiates cannot provide any actual direct treatment of HPPD. I believe they would decrease symptoms by way of pupil constriction, which would give the impression of a reduction in symptoms, much like symptoms are usually less during the day than at night.
  4. Most of these supplements are a complete waste of money for something like HPPD. In my early days of HPPD I was perhaps naive and somewhat desperate to believe they could help. I eventually tried uridine and it provided no positive benefits. I think the logic in trying it was misguided. It also coincided with tinnitus for myself, and whilst I think it was unlikely to be the cause, I remember others also having reported tinnitus upon uridine supplementation.
  5. No problem. There's also a number of lifers who are part of that group as well.
  6. It sounds as though you have 'visual snow syndrome' (terribly confusing name), which is for most people exactly the same (in terms of symptoms) as HPPD except VSS is not induced by drugs. That being said, advice given on this website is probably still going to be useful because the mechanisms appear to be quite similar. There's also a very active Facebook group which has many active HPPD and VSS members which you might want to visit: https://www.facebook.com/groups/visualsnowsupport/
  7. Can't you scan your prescription in and email it to an official online pharmacy and get them to post the Wellbutrin to you?
  8. Certainly the treatment options for epilepsy aren't perfect, and it is not universally treated, but many people are successfully treated, and it is actually one of the very few disorders that can truly be cured, rather than just treated (although only in extreme cases of removing areas of the brain that is causing the epilepsy, and removing that part of the brain shouldn't cause significant issues!) There are also innovative treatment techniques available like deep-brain stimulation. But the idea of showing the relationships with VSS is so that researched could eventually be pooled. If you have a bigger group of people and more resources, you have more chance of getting stuff done, and a much greater chance of successfully applying for things like grant as you are applying for a larger community. Gene testing is key to showing relationships, and I hope something can be worked out on this front, but I just don't know how realistic it is in the short-term. Clearly a full sequence is the preferred option, but the cheap 23andMe option might be more realistic, even though it won't be as revealing. Perhaps you can make another appeal for samples? Genome-wide association studies/disease gene identification is required and a geneticist with experience of this is essential. I hope inquiries can be made to Beckley regarding gene testing but I'm not hopeful of the outcome. I've found a couple of good (although very expensive) books to learn more about this. Dr A probably wasn't able to get funding simply because it couldn't be shown there was enough people with the disorder to make it worthwhile so it wasn't considered 'important' enough. Treatment trials are actually starting next month as part of the VSS research, although I understand the treatments they will be trialing aren't for long-term use, but rather to give a better indication of things which might work (much like Dr A informal study). One of them is well-known as a treatment option to this community anyway, although they are using intravenous injections.
  9. Of course people need to know the risks and agree to them, and consent issues would be appropriately sorted whatever the tests by experienced researchers/doctors. R.e. cost and benefit, since PET scans were previously used by the VSS research team and because there is a clear relationship between the two disorders it makes sense to see if the results can be replicated, particularly by HPPD patients who have symptoms which are particularly symptomatic of HPPD (e.g. warping of objects). If you can show they are the same thing research can then be joined with them and you have a bigger pool of funds and resources to research with (although I think every case is different in either case). You can also see relationships between migraine and epilepsy, for example, as PET scans have been used extensively in those areas. I would imagine a room would be hired out for a certain amount of time and this reduces costs. If I recall correctly the VSS fundraisers raised $20k for their initial study of 17 patients using PET scans, and the money was also used to help with travel/accommodation costs of patients, although I don't know if money came from elsewhere from institutions/grants or whatever to help with the costs because everything included, that seems particularly cheap. But cost does need to be seriously considered. How much can we realistically raise? Most VSS patients would presumably prefer to donate money to the research already taking place, which limits numbers already. A large cost which also needs to be considered is having the tests results analysed. This is particularly pertinent to gene testing, as we would need a geneticist on board not only to find associations between data, but also to draw conclusions from the data. I don't know whether the Beckley Foundation is the type of organisation which would be involved in that sort of thing. From our viewpoint I think gene testing is the most important area for loads of reasons (and as you suggest it is imperative it is linked with a survey), but I think from their standpoint it should also be considered important as they are an organisation which promotes the use of certain drugs in certain situations and so they need to be able to screen to exclude certain people from treatment studies if they are susceptible to HPPD or other drug-induced disorders. You raise a good point r.e. medications and it is something I have considered as well. This is one of the many reasons why I think it's really important to get the comprehensive survey completed first before steaming ahead with tests etc.
  10. If you want to see the correlation between HPPD and VSS (Visual Snow Syndrome) patients PET scans have already shown abnormalities in metabolism of glucose (this is a very important area to clear up and so would be my suggestion). DaT/SPECT scans could also be considered which measure the activity of the dopamine transporter if it is thought this could reveal any information. fMRI could be used to see how a person responds to particular stimuli. All these tests are more revealing than qEEGs, I think.
  11. Whilst I've not heard of opiates decreasing visual snow, I have read reports of it reducing some other visual symptoms, probably due to the effect of pupil constriction rather any therapeutic affects at the source of HPPD in the brain. In this sense, they can mask symptoms, rather than treat them. However, long-term opiate use obviously has its problems.
  12. If your biggest problem is anxiety over the visual abnormalities then that theoretically should be the easiest symptom to overcome. Just remember they're only visuals - they're not a threat and they're not themselves dangerous. You just have to get use to them and not focus on them - that way you ignore them and even forget about them. I'm so used to my visuals now I often forget about them - even at night time when they're worst. My vision has changed now and I just accept it. That's what you've got to do. You might even want to consider taking a break from this site - for some people they find that helps. Does Klonopin help you in any other way? If not it's pretty pointless taking it.
  13. Dr Abraham is no one to tell you your case is very serious if you do not consider it to be. Everyone has different symptoms with different severities, and there are symptoms which people subjectively consider to be worse than others. As previously mentioned, every case of HPPD is severe in that it's an alteration of neurological function and consequently you have to watch your intake of substances (both legal and illegal) from now on. I know I'm repeating a previous poster, but if you think you have a mild case of HPPD and can generally get on day-to-day without any problems, then you probably DO have a mild case of HPPD. But that's not to say you should take it lightly. You have to be sensible for the rest of your life. Most people on this forum seem to suggest the non-visual symptoms (which not everyone experiences) are worse than the visual symptoms. Although tremendously flawed, the DSM diagnostic criteria for HPPD actually states: B. The symptoms in Criterion A cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. Why have you put Klonopin in the tags? Has Dr Abraham suggest you take it?
  14. Pain where my thighs and buttocks meet that is exacerbated by pressure (e.g. sitting down for long periods) and much releaved by standing up and walking around. The pain is burning/stinging/tingling which and sounds much like neuropathic pain - however I have had my nerves tested and there's nothing wrong with them. An MRI of the spine and pelvis also failed to show any significant abnormalities.
  15. Good on you for smoking no weed this park week. Try and keep it up. Weed and HPPD don't go.