VisualDude

Sounds like a nasty experience. Curiously, just talked to another neurologist for an appointment. One thing he immediately asked for was if I had had a sleep depravation EEG. It would seem that sleep depravation could aggravate/trigger areas that might show up.

This question come up a lot (for obvious reasons) The main issue comes down to the ‘coarseness’/crudeness of imaging. While the pictures look pretty cool and detailed, they are actually quite low in resolution. I got a copy of my MRI and each ‘slice’ is only 512 x 570 pixels – this is like trying to look at bacteria with a magnifying glass. Asked a neurologist if a PET scan would be useful (as they do this in the UK for unclear cases of Parkinson’s), but he said the damage is too diffuse for the scan to be useful. Damage has to be extensive to be visible with medical images. They are still good tests to have run, but they are limited. It may seem surprising (even disheartening) that our brain injuries are ‘mild’ – but in the spectrum of disease they are. 　 To put this in perspective, take Tetanus as an example. A toxin from a the bacteria Clostridium tetani irreversibly binds to GABA receptors, blocking inhibition inputs to neuronal dendrites. This leaves the excitation inputs (glutamate) dominant causing continuous activation of muscles. See http://en.wikipedia.org/wiki/Tetanospasmin This damage doesn’t show on medical imaging or EEG. And, of course it is so obvious from clinical signs that none are needed. The only treatment of this ‘poisoning’ is the keep the person alive long enough for the neurons to grow new terminals and synapses. 　 Our condition is similar in that damage is microscopic. And any ‘cure’ involves time, the ability for the brain to repair, and finding helpful techniques to encourage this repair.

I have been consiously sedaited 50 ccs of versed... Well, if they use 50 that explains why I remember everything after just 6 - lol

Again, the same main two: Wellbutrin SR and Sinemet 25/100 Since dopamine is used in the motor control system, this benefit isn't so unusual - just didn't expect or know it at the time Also, dopamine is used in the Amygdala (which is involved in pain perception) - so my pain perception improved Furthermore, since the Amygdala is the heart of automatic 'fight/flight' response, it is a core of anxiety. It is a heavy user of dopamine - and here too, things improved Lastly, dopamine is used in visual processing as well Dopamine is very much a perception and control regulator, so if a person has an imbalance, its supplementation can help. Perhaps too, there is a therapeutic effect possible from a rehabilitative point of view - like special exercises It is really hard to know how an individual will respond. And plenty of people find Wellbutrin too stimulating. All the neurotransmitter systems have complex feedback and feedforward systems. And interface with neurons with different types of neurotransmitters. But at least these are possibilities to explore with your doctors

Do you happen to know how much versed they gave you? I was asking the same questions cause I couldn't remember the answers people gave me HA - this is me after a couple hours. Thinking too about your post about having (and not having) a job. The stupid thing with me is that the less I do, the more capable I am. Start doing something productive and I start flubbing up and getting confused. Add a little driving (car fumes) and I might as well be a jellyfish.

It is not a placebo because you take the prescription to a pharmacy of your choice and have it filled So, at least with the trail that you participated in, it was a medication that is available to people – but just used for different disorders? (not a new med under FDA trail approval)

If I drink, I feel the effects of drinking at the time and it has no effect on my symptoms. However, the next day, anxiety is higher. Also there is more fatigue. Within a day or so, there is no lasting effect. But the more I drink, the worse the next day. Usually only have 1 or 2. As a rule, if I want to feel the best, avoid drinking altogether. However, there are days I just have a drink anyway. Oddly, since starting Sinemet (carbidopa/levodopa), alcohol has less effect at the time of drinking. There is a general attitude among the Parkinson's communities that it is important to moderate drinking Hope this helps (and am not being a bad example )

Thank you for clarifying your meaning – I thought that perhaps you meant that some members here had benefit for a few months then it lost effectiveness. Here are a few corrections though, Levodopa is L-Dopa Sinemet is carbidopa with levodopa. Levodopa is very HARD to take because of the peripheral (body) effects. The name Sinemet actually means without vomiting – because most people (including those with Parkinson’s Disease) cannot tolerate levodopa without puking. Dopamine cannot cross the blood-brain barrier. But Levodopa can and it is a precursor for the brain to produce dopamine. Carbidopa is more chemically ‘active’ than levodopa but similar to levodopa. Levodopa, Carbidopa, However carbidopa does nothing neurological. It is used as a ‘decoy’ so that the body doesn’t get sick on the levodopa. Since carbidopa cannot cross the blood-brain barrier, while the body is busy with it, the levodopa is left remaining so as to enter the brain. (for what it is worth, the effect and use of carbidopa was discovered by accident) As for Short amount of time, works for some hours, Technically the half-life of levodopa is very short ~45 minutes, however the effect can last for days. People with early PD can do great with just 1 dose a day. When it is very advanced, then many doses are needed. Because it is a precursor instead of a true agonist, this ‘inconsistency’ happens. As for it effects your liver, nearly everything you take into your mouth affects your liver. Carbidopa/levodopa is a particularly safe medicine. It is, in practice, largely a geriatric medicine (a population of people with reduced hepatic and renal functions) since on average the early signs of PD start in a persons 60’s. For these people, periodic testing of liver function is done if they are taking large doses. With the doses I take, my doctors are not even remotely interested in liver testing – in spite of taking several other meds as well and occasional alcohol use. As for nothing to play around with on your own, I agree – all prescription medicine should be obtained legally and with supervision of a doctor. Don’t take anything bought on the street.

Keppra is indeed so far just masking my symptoms It may mask or it may treat. While our desire is for a cure, it is real progress to find a med that positively affects a person. It may over time be somewhat curative as well. And certainly provides direction for more things to try in the future. All this is POSITIVE.

tension you get in your neck, body aches, muscle spasms Unexpectedly, these symptoms were significantly reduced when I started taking dopamine boosting meds. As was overall pain response.

Well, since you need the surgery, the decision of what to do has been made. So view you concerns about HPPD as an experiment. It is unlikely that you are going to be made worse. But it may be useful for you to find out how the med affects you (be sure afterward to get a report of what was given to you). A lot of finding solutions is detective work – you just have to try things and log how they affect you. I’ve had locals without negative effect. Lidocaine shots actually make me feel better overall, though visuals aren’t affected. Recently had colonoscopy, with 6mg versed and 100mg fentanyl. Stayed awake a watched the procedures on the monitor the whole time while chatting with the nurse (the usual topics about ‘big brother watching’ and ‘have you found Hoffa yet’). In the end, visuals, etc. were not made worse. And apparently, versed doesn’t mess much erase my memory as it seems very much there. So go into your procedure calm and relaxed. Learn from it while you are trying to patch your body up. Hope this helps

There is a lot of potential on an empty page – the world lays before you. But there is a lot of information in a full diary.

Merkan, The levodopa is a short term thing that seems to make some people a lot better of feeling "normal" for a short amount of time. Couple questions, Are you speaking of taking levodopa by itself or with carbidopa? What do you mean ‘short term thing’ or 'short amount of time'?

I asked one neurologist about ‘continuous seizures’ that are very mild. These are reported in books by Oliver Sacks – causing the symptom of hearing the same song over and over again all day. The doc said he was familiar with these but it wasn’t my problem. I have to agree. The amount of proper brain activity falls in a statistical bell curve. What we suffer is an imbalance of activity. This is very typical of psychiatric disorder such as major depression, anxiety and schizophrenia. With most of us, the over-active areas can be partly controlled with benzos and anti-seizures. Something needs to be found to encourage the under-active or otherwise dysregulated areas as well. All this is tricky. And getting doctors to work with you takes time – and the right ones. In this country, neurologists are famous for running test and telling you what you don’t have. And then doing nothing else. Don’t know how much option you have with the NHS. But hopefully you’ll find doctors who will work with you. 1998 is smart in emphasizing the symptoms that match up with meds you are looking for - logically prompting the doctors 　 Merkan, I am very calm in nature, such that my wife even tells me that I don’t get angry enough – perhaps Keppra is what is needed, lol But seriously, thank you for mentioning that Keppra rage is overrated – I was a little nervous. Noticed in another post of yours that you actually suffer some emotional ‘flatness’ from it (hardly rage).

Well, all meds are risky. Parkinson meds have some curious problems such as a 3% chance of having compulsive gambling or sex issues. With Sinemet, long term (5+ years) use at high doses has a significant risk of causing another movement problem called dyskinesia (presence of involuntary movements). Some dopamine increasing meds, such as Adderall, actually increase the risk of developing Parkinson’s disease. If you read the fine print of on serotonin meds such as Zoloft and you’ll see they can cause Parkinsonism. With exception of one (for a couple years), I take unusually small doses of all meds. And cycle dopamine meds from higher to lower doses over about 4 months. For some reason this technique increases their effectiveness, even with appearent 'permament' improvement demonstrated when not using the med at all. Sort of using these meds as chemical exercisers like rehabilitation exercises. I suspect that, just as with hormones, when you increase a neurotransmitter, the body counter-reacts thus making it less effective. It started doing this because of the desire to see how far things have progressed and to establish the lowest effective dose (something that minimizes side-effects, building tolerance, …). Also, as a precedent, this technique is important in mega-dosing supplements. Maintaining high doses of these can cause problems – sometimes even the ones they are supposed to treat. I’ve noticed a general fear/concern about increasing dopamine. It seams there are all sorts of articles about dopamine as love potion, hallucinogen, and addictive. While dopamine circuits are responsible in addiction, they are simply recording a response to something else – sex, food, opioids, … While everyone is unique, the only negative side effects I’ve experienced from carbidopa/levodopa is a slight thirst for a day or two, and darker urine (carbidopa) if I don’t drink enough water. Wellbutrin isn’t a PD med, though the Parkinson’s community reports favorable improvements with it. It was developed as an antidepressant. I find its stimulating effect requires caution with regard to dosage. If the doc is recommending it – do you have some depression? You mentioned having trails. A couple months ago a doctor told me that they are very much a dopamine issue. Also, could you describe how your vision has decreased? Is it more than just Presbyopia?

Symptoms that improved are: frames, poor contrast, depth perception, acuity, pain perception, anxiety, depression, color, tinnitis Problems from higher dose: Migraine headaches, bad aggitation. Don't use Wellbutrin much now. Using Sinemet (carbadopa/levodopa) instead. It doesn't have side effects for me. If I take a lot, vision is just too bright (not painful, just bright). Often wonder if either would be useful for people who say their vision got dim. Floaters are there if the light is right, but I have to look ... just not a problem. Do you have contrast problems, difficulty in evening lighting and/or watching TV?

Perhaps "Plasticity" is the word – changes in synaptic binding which are, of course, how we learn, how the brain functions

Penny, I’ve must be spending too much time on DP posts where people feel unreal. Your title, People wanting to be validated gave me a very different expectation – yes, we are all valid Thank you for your post though. Perhaps one reason there aren’t many posts on this forum yet is because people can’t get on to interact.

I had some success Was you success with visuals or just with anxiety? I ask since you speak of Klonopin in context of anxiety (stress).

While Gabapentin has relatively minor effect on my visuals, when I started it (300mg, 6x a day) it actually gave me energy. As overall health has improved, the dose has gone to 1 or 2 times a day – the higher dose now ‘drugs’ me. Though I do not suffer visual snow (unless ‘back-lighting’ can be considered 'smooth' visual snow - both are 'noise'), will be discussing Keppra with doctors in a few weeks. Klonopin and Gabapentin both help the back-lighting. As does higher doses of Sinemet, but prefer to keep this as low as possible. The amount of dopamine agonists ‘needed’ has gone down considerably. So the moral of the post is that for some it is possible for the minimum effective dose to lower. Hopefully you will no longer need as much medicine as at first. But if you do, it is a small price to pay for the gain in functionality. And you can always re-evaluate down the road.

Thanks for the post HBB My visual imperiments, after-images etc, did not improve at all Do you have visual snow? after trying about 8 other medicines Would you please list the other meds that you tried and their effects? It would be most helpful for me. Thank you

Glad that you are trying something. Just like the advice above, go slow and take B6. I haven’t tried Keppra but have tried Depakote. It did nothing for visuals but was mildly calming. Since that is all it did it was discontinued. Please keep us informed on how you progress. If remembering correctly, you do not have visual snow (?)

Yes, this was the first med that helped - and it did so rapidly, within hours. I still take it from time to time, but only low amounts (75mg Wellbutrin SR in the morning). Anything higher helps visuals more but causes other problems. I've heard rumor that norepinephrine is difficult on people with HPPD [ Please, feedback from members would be very much appreciated here. ] But the dopamine increase has been very positive for me. If you decide to try it, suggest you not get the XL version because you cannot safely cut the pill smaller. With SR, you can try half, quarter or whatever size. Mention this point to your doctor. Has your doctor tried you on any meds yet? Is this the first one he suggested for you? What are your major symptoms?