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Ok, just went to my local GP told him about my hppd and that i would like to try sinemet to combat some of my visual symptoms mainly being after images and the starbursting as i have been told by people on the forum this med might give me a significant reduction of these symptoms.

They are SINEMET 100/25 to be take twice daily (which i will start tommorow after breakfast)

It contains 100mg levodopa and 25 mg carbidopa.

Now what i wanted to ask is there anything i should be aware of that may happen upon taking this medication, i would like to be prepared the doctor said it could cause a sudden drop in blood pressure and cause drowsiness. Is there any other effects or long term effects i should be aware of? Also for those people this has worked for, how long roughly till i see a result?

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the doctor said it could cause a sudden drop in blood pressure and cause drowsiness

Start with 1/2 pill, then work up. Zukov experienced the above once. Other members have not reported this. Usually it either is helpful or does nothing at all (like water)

Is there any ... long term effects i should be aware of?

Jay1's doctor said that low dosage can be taken for life without problem. For people who take large amount (up 1000mg levodopa / day), they have a 50% chance of developing dyskinesia [http://en.wikipedia....wiki/Dyskinesia] in 5 years time - this is the worst problem.

Is there any other effects ... effects i should be aware of?

This med is mainly used for Parkinson's Disease. Starting dosage is typically 3 pills a day. As with other dopamine agonists there are lots of symptoms mentioned, including ~4% chance of hypersexualality [sounds kind of fun to me] and gambling issues.

In practical terms, lower blood pressure is the most common (mine has always been low and really doesn't seem different with Sinemet). Stomach feeling different first couple of days. If you dehydrate, urine will be brown (carbidopa).

As far as HPPD symptoms go, my depth perception was weird. Upon working with Sinemet it got weirder initially but gradually stabilized over months. The weirdness was both being sensitive to light (for example, it would change when putting on sunglasses) and with perception of how to adjust to depth (such as grabbing a hand rail).

how long roughly till i see a result?

Some have reported noticing it within 30 minutes. I cycle on/off every few months and notice it that quickly now. However, when first trying it, it was on the 2nd day to notice. Unlike many psychiatric meds (such as SSRIs), its action is quick (don't need to wait 6-8 weeks).

Recommendation: [ Note: only increase amount if lower dose is not effective! ]

Start with 1/2 pill twice a day

On day 3 go to 1/2 pill 3 times a day

On day 5 go to 1/2 pill 4 times a day

On day 7 go to 1 pill 3 times a day

On day 9 go to 1 pill 4 times a day

On day 11 taper to 1/2 3 times a day

If it is not effective at 4 pills a day, then you may need a combo (like Merkan)

If it takes more than 2 pills a day to be effective, then discuss long term use with doctor.

I've used Sinemet 100/25 for over 3 1/2 years. IMO, cycling every couple months has helped it to remain effective and 'train' the brain. In general, I need less now than when starting, which is opposite of what usually happens.

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Thanks visual, very helpful information, i appreciate it. If i have any problems or success with this i will post back up on here :) What do you mean by cycling exactly? Is that just doing the schedule above then tapering off to see where i am then starting again in a few days? Sorry i'm new to all this

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By cycling I mean, every couple of months discontinue for a week or two to see where you are with it. When I stop, I cold turkey it. Seems to take days to weeks for it to wear off, even though the meds half-life is about 90 minutes (out of body in about 8 hours).

Some symptoms seem to be permenently improved. The best is 'frames' (used to see movement with about 1 second delays, single frame not multiple). Then depth perception remains improved. Contrast holds well too. Overall sight remains 75% better, but when starting again, vision is sharper and more adapting.

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Cold Turkey means "In a sudden and abrupt manner"

Halos are definitely improved with Sinemet

Traces - I had blurs between frames which improved with Sinemet. One doctor told me that "frames, trails and tracers are a dopamine problem"

After images - negative ones improve. It may be due to dopamine's involvement in light adaptation in the retina or dopamine's involvement in microsaccades

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Well im on the 3rd day and nothing just yet, i think im noticing what you mean about the depth perception thing, like before i seen everything as flat so it was already fucked but i think now things are a bit more jumbled when i look at them, its wierd it could be just me thinking about it. Also i seem to have started to develop a shakiness, lots of twitches in the legs and stuff. But i am under a fuckload of stress at the moment so that could just be that

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While less so now, in general, changing dosage can change 'smoothness' of motion a couple days. I've found this so with all dopamine meds tried thus far. It seems the greater the need, the greater the instability.

It is interesting that you are going from 'flat' to "a bit more jumbled" -- clearly the area that forms depth perception is being targeted. 'Flat' isn't normal health.

The timing with stress isn't so good now, but life does that sometimes. Give yourself some time with it all. What you are saying sounds good actually. Just work through it slowly. If at any point you feel the need to back-off, the do so and try again later.

Are you taking any other meds right now? Topamax?

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I realise flat isn't normal, i think it is more of a derealization thing, also last night i had my sinemet before entering the club i went to, im not sure what was happening but it felt as if i were in a bubble and everything around me was being pushed out, this to me sounds like my dp acting up which makes me think its just the anxiety. As far as any visual symptoms being reduced it hasn't done anything, i still see massive halos around lights/ starbursting and the beams that come off them, I will keep trying with it though.

No, im not taking any other meds, what is topamax?

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Topamax is a migraine med mentioned in another topic http://hppdonline.co.../881-migraines/

Vitamins should be fine (I swallow plenty)

my dp acting up which makes me think its just the anxiety

So you find anxiety makes DP worse?

How about DR or any particular visuals?

Have you tried Klonopin in the past?

massive halos around lights/ starbursting and the beams that come off them

Do you find this makes your vision blurry and feels like looking through a dirty window? And you try to rinse your eyes (water, various eyedrops) but it doesn't work - like an oily film that doesn't wash off?

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Yes, well i know for a fact that when i get angry or scared my dp flares up, anxiety is a constant thing so i find that it is the fuel for my dp, my dr is constant but flares up when my emotions blow up. right now my visuals are crazy because of what i am going through, everything warps a lot harder, colour saturation is even more saturated, everything is just wierd. No i have not tried klonopin, i was thinking about it but i dont want to get addicted to it, as my anxiety is constant so i feel i would use it a lot if it helps.

Yeh, like a cloudyness in my eye or something, usually when something is in my eye like tears or dirt my vision goes to shit, ghosting flares up something crazy, even if the lenses on my glasses are dirty or im looking through a scratched dirty window it disturbs my vision and makes it worse, like my brain can't process how to see it correctly

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Here are some suggestions [ I seem to be full of shit B) ]

Try Patanol for 'cloudiness'

When problems started, the ophthalmologist saw nothing wrong with retina, etc. However, he said I had a very bad case of allergic conjunctivitis though I didn't suffer itching, nor did they look particularly red. Though this should not affect vision he had me try several different eye drops. As mentioned above, there was a cataract-like fuzziness in direct light like looking through dirty glass but nothing seemed to wash the 'glass' clean.

After a few prescription eye-drops and every OTC eye-drop I could find, one helped 'clean the dirty window' - Patanol. See: http://en.wikipedia....iki/Olopatadine However, it would only work about a week then become ineffective until trying again a few weeks later (something quite common with antihistamine meds - which is basically what this eye-drop is).

When I take Sinemet, it largely does what Patanol did - which on the surface seems strange. However it should be noted that the cornea has acetylcholine and dopamine receptors - which it is now well known that dopamine is involved some of our HPPD symptoms.

So give this simple eye-drop a try and see if it helps.

Emotions

From your posts it is clear you are going through a rough patch with the aftermath of HPPD, etc. (in other topics you mention some of these). Since strong negative emotions aggravate some of your symptoms, it wouldn't hurt to try occasional, small amounts of Klonopin. Since you don't want to get addicted, just use it enough to take the edge off so you can get 'grounded' and work through these emotions.

Note: grief, anger, resentment, etc. are natural responses that have to be worked through - and just because you try to 'work through them' doesn't mean giving up on getting well. It simply means regaining inner peace in spite of it all.

Chronic strong emotions DO aggravate the brain. Beside medications, there are other things you can try (exercise, meditation, ...) - but I'll direct you to one that may sound odd, address inflammation.

Inflammation

A core issue with most disease/disorders is inflammation - this actually cannot be overstated. Inflammation is simply increased metabolic activity. It is most commonly thought of in wound healing. Inflammation also occurs in the brain, which means increased neural activity (not just increased non-neural activity). It is already stated that HPPD involves cerebral disinhibition (over-activity). There can be viscous cycles to break - for example, chronic anxiety causes inflammation which causes chronic anxiety.

There is much to try to reduce inflammation and it can be an exhausting topic.

One area is food sensitivity. You can try various elimination diets and what not. An ultra simple thing you could try is just eat potatoes and zucchini for 3 days (go ahead and use butter and salt). Be sure and get organic stuff. This is somewhat annoying but you have nothing to loose trying.

Gut dysbiosis is another topic - you'll find a thread here about candida diets.

Here is the simplest, non-annoying thing to try: Turmeric. It is an anti-inflammatory. This lowly spice is good for cancer, arthritis, Alzheimer's, ... Just try 1/2 tsp 3 times a day and see if it helps.

Well, this may seem a strange post but there is value here for all members to consider.

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Carbohydrates is probably one of the things to cut out since it really fuels inflammations. When the agriculture society started, inflammatory diseases sky rocketed. Try strict ketogenic diet for a month. Its the only none-med action i taken that made a difference and that difference is HUGE. However, if you eat a lot of carbs and especially sugars you will have withdrawal.

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I stopped the sinemet, wasn't doing anything but making me feel wierd, fuck meds, im just gonna concentrate on being as healthy as i can. I've started gym and a healthy diet mainly consisting of protein enriched foods to get big, im just gonna accept this shit for what it is like i was doing before and if it goes away one day then great but otherwise i dont really give a fuck about it. As for my depression and anxiety im not gonna bother treated it with meds, it will only bury me deeper in that hole in the end. I pull through it even when im at my lowest so i'll be fine.

Thanks for the help and information though

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Sorry about that friend. I also had to suspend the trial of sinemet by strange sensations and low pressure (once I was under so much pressure that I fainted directly). It is a matter of keep trying until you find the right treatment.

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  • 1 month later...

Just hit my 30 year aniversity of 24/7 HPPD. Some of you "old-timer's" probably remember that I used to be pretty active on "the board", not much anymore. I function fairly well, chugging along on my 1.5, 2 mgs klono a day, although I still have the occassional "heavy" dp/dr days that basically suck. Headed to shrink next week, going to request a script for sinemet (considered keppra, but decided the sinemet sounded like a better choice for me). Bringing the blurb about Dr. Abraham's study (I know, it involved drugs in addition to sinemet) but was wondering if there is anything out there study wise (other than anectodal) about sinemet helping with HPPD and/or dp/dr. Would really help me when speaking with the Dr. You know, it's not like the old days where my HPPD was borderline debilitating, but I really could use a lift in life, and if I could get knocked off my "baseline" as far as the HPPD is concerned, it really would be HUGE. Will post what happens, hope all are well. ymmit

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