must-be-a-way-to-heal

Just started SINEMET

26 posts in this topic

Hey Everyone..

Just been to the docter and was perscribed Sinemet.

Starting on half a tab three times a day...

Fingers crossed this will help...

Any possative insight from others experienced with this Drug would be apprecated :)

Thanks :)

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That is exciting to hear ... hope it works well for you.

Would you please list your symptoms (halos? starburst? contrast? motion? DR?, CEVs, OEVs, etc...) This will help us put your trail in perspective with symptoms. Thanks

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Thanks Ghormeh, :)

The Dosage / Streangth is 100MG - 25MG (half a tab 3 times daily)

As i read in earlyer posts, to start on a low dose, then gradually increase. Possibly up to three whole tabs per day.

I am also on a low dose of valium.. Aprox 2 5 mg tabs per day.

VISUAL :) thanks so much i really hope it works well too!!!

I will list my symptoms here :

I am not current with all the new HPPD symptom termonoligy so i will do my best to describe first hand as i see it. I am sure all the symptoms listed below can be put into HPPD catigorys to make it sound more simple / simplify the process so it does not sound so intense. I would like to do this.

Ok here goes...

Billions of constantly moveing patterning, like a shimering universe, millions of shimmering pin pricks with an array of all colours overlapping everything.

multiplicity of coulors ( purple, red, yellow, white, black, pink etc etc.. ALL COLOURS tho very bright psychadelic colours, not normal colours)

Implodeing, Explodeing, Constant movement.. Like a fuzzy television only with trillions microscopic psychadelic patterning, much finer and multiplied many more times than a fuzzy black and white TV set. i.e. all colours.

Ghosting, halos around objects, moveing in and out of the object, distorting the object.

Movement of objects.. starbursts.

With lights out it is total engulfment.. shutting my eyes i can see a million stars like looking into a kaleidascope or looking into the universe from out of space. With lights out it is pretty much the same thing.

Majour visual snow with multiple "worm holes" eating into things.

All the patterns eat into everything.. firey reds etc etc

"Seeing the air" mainly just intense patterning over everything... Intensified / engulfed by in the dark i.e. lights out.

It is distressing at times relating to family, co workers and not being able to see them properley.. It is difficult trying to look at one object however basic and focus on it without some movement. i.e. difficulty in concentration.

All this (visuals) is from first thing in the morning ... until last thing at night....

At times some activitys are helpful... i.e. some good days / times ... other days can be intolerable.

At times i get a weird feeling behind my eyes.. it is hard to describe this feeling.. the way i describe it is.. it just feels "weak" im not sure how to put it into words??

I know this description is quite full on... i have had HPPD since i was 17 and im now 34

Thanks very much again everyone for all the support-

I totally welcome any questions / insight / imput / or shared experience..

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Best to change only 1 thing at a time ...

Have you noticed anything with the 2 (?) doses you have now taken?

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I was taking valium before i started Sinement..

Yesterday was my first day on Sinement... basicly i have only taken one and a half tabs in total. So just sarted.

No changes as yet... appart from a very traumatic / freaky dream last night lol

If u suggest i stop taking Valium.. maybe that is a good idea, i would be happy to do so. Likeley it would be more benefical for me in my day to day activitys and long term.

Ok so i will stop taking Valium now, and possibly only use spareingly on rare occasions.

One thing i am concerned about in regards to Sinemet is... it recomends "not to eat a diet high in protein" i.e. the amount of Levodopa absorbed by the body may be impared if you eat a diet high in protein...

I am an athlete and engage frequent weight training so i do have a high protein diet. This is something i will discuss with my docter tomorrow and work out some solution. He may put me on a higher dose to make certain the body is absorbing enough.

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If u suggest i stop taking Valium

I suggest you continue taking it the same as you have been. If you stop now as you are trying Sinemet, then there are 2 factors going on at the same time. You can always stop Valium later and note the effects. Also for some increasing dopamine can be slightly stimulating and something to calm that can be useful (benzo and/or anti-seizure)

not to eat a diet high in protein

Merkan pointed this out a while ago ... you may wish to PM him. Since levodopa has a half-life of 45-90 minutes, then between meals should resolve and protein/absorption issues.

I've noted that many with Parkinson's and other brain injuries do better with high protein diets. It is very individualistic - depends on a persons genes. [As a side point, there is no such thing as one diet fits all ... dietary needs are based on genetic history] For me, low protein and low fat diets are actually disabling ... high carb diets make me sick.

I will list my symptoms here...

Have you ever taken Klonopin? It seems to be the best for moving patterns and color distortions

Do you have any sort of DP, DR, low pleasure response, and/or low motivation? (these can be dopamine connected)

About night vision - with all the static, moving patterns, etc. this might be difficult to answer, but: Do you find contrast is poor in dim lighting?

Do you have any peripheral things going on? (tightness/spasms, shaky or movement coordination issues, pain or burning or tingling or numbness)

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Hey Visual,

I am finding this really helpful and so pleased to have made this connection with you :)

I have not taken any more Valium yet, i may just cut down to half a 5mg tab in the evening. I totally agree with what you are saying about "increasing dopamine can be slightly stimulating" i can feel the affects of this taking place in my body. So im sure a small dose of valium may be benefecial as i am making this transition.

That is great insight regarding the half life of Sinemet, so timeing the doage between meals sounds like an exellent way to deal with this.

I will speak with my Docter about it, as well as shoot a PM to Merkan, chat and find out what has worked best for him :)

I understand what your saying about diets being very individual / diffrent strokes for diffrent folks... I do eat in a very ballanced health way, tho just more protein than usual to back up my efforts in the gym.

As for Klonopin.. yes i have used it numerous times over the years .. Most recent period of use i spent nearly 11 months on it last year.. It took me at leats two months to withdraw. The last few weeks of withdrawral symptoms were quite freaky, likley i stopped too quickly... anyhow i had to use another medicine, i have forgotten the name, it is used for withdrawrals from alchol. Some of the withdrawral symptoms included auditory hellucinations (freaked me out) "Note" This was only a withdrawral symptom, i have never sufferd any other ailments or condition appart from HPPD.

Klonopin.. takes the edge off it for me, relaxed me, tho it is still there... For me i find it quite easy for it to become habbit forming.. and in my experience, once i hit a certain point, that the same dose does nothing or even has the opposite affect, like keeping me awake.. this effect has some medical name that i cant recall unfortunatley.. I think its "perplexia" or something like that. Still i find there are many benefits with Klonopin also, tho i feel for me, i need to have it monoterd strictly with my history.. so it does not become habbit forming and so i dont buld up tollerance. This may be an option too.

To be honest.. i dont fully understand what DP / DR is. I need to look into that more fully to understand it. Im also not sure what low pleasure response means? Athough often .. many times i do have low motivation.. it is like very often at times i find it difficult to get myself to take action on things that really need to be done. LOL anyway...

Im not exactly sure what you mean by contrast in poor lighting.. I think i understand what you are saying.

Basicly even in dimed light or when it is dark, all the visuals just overlap everything, like being underwater in the ocean for example.. When it is dark.. it is like cosmic combustion, it is intense when it is dark, that is all there is, thats all i can see... for example " A TOTAL THICK HPPD WHITEOUT" over everything.

When lights are on it is not a total "THICK HPPD WHITEOUT" over everything because there is more defenition with and between objects.. more light more in my visual awarness. Although with the lights on all the visuals are still there.. only it is not a "TOTAL HPPD BLACK OUT" because i can still see other objects, not like it is when it is total darkness if that makes sense? This is kind of tricky to describe, tho we are getting there :)

Ok intresting you mention this, since i have recently started the Sinemet i have some small coordination issues...feeling tired and i have definatley noticed reasonably strong tingling sensation through my whole body. I would have thaught that this may be "the stimulating effect of increasing dopamine" ?

You are really helping me understand this at a much greater level.. I truly appreciate all support and guidnce.. Thanks so much Visual.. awesome!!! :)))

Doing my best to upload a photo of a painting i did at 17 years old of me and everything i see.. Just wish i could get it to upload - im sure to get it up soon :) Thanks again, im truly fortunate to have made this connection with you :)

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As for Klonopin.. yes i have used it numerous times over the years...

Seems like Klonopin was mainly for anxiety. Did it help visuals? How much did you take per day?

Ok intresting you mention this, since i have recently started the Sinemet i have some small coordination issues...feeling tired and i have definatley noticed reasonably strong tingling sensation through my whole body

This is interesting. I noticed small coordination issues with fingers when first starting (but have always been clumbsy). Anything with visuals yet?

A thought occurred when reading your post. Since you have had HPPD for 17 years straight, it may be hard to remember what 'normal' was like. So it might be harder to communicate some of this stuff.

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Seems like Klonopin was mainly for anxiety. Did it help visuals? How much did you take per day?

The klonopin, took "the edge" off the visuals... was helpful some what, tho pretty much all still there.. i was taking one to two tabs per day... tho then it moved up as i was building tollerance and started using higher doses, built up a dependance and reached a point where it was having the opposite affect.. keeping me awake.. and became partly inaffective... thats when i decided to withdraw and come off it.

This is interesting. I noticed small coordination issues with fingers when first starting (but have always been clumbsy). Anything with visuals yet?

Sure it is intresting..."awlays been a bit clummsy" hehe :) Unfortunatley nothing noticable with visuals yet, tho i suppose it is still early days ?

A thought occurred when reading your post. Since you have had HPPD for 17 years straight, it may be hard to remember what 'normal' was like. So it might be harder to communicate some of this stuff.

sure, i understand that.. it seems at times when life is going really well, and i am fully engaged in life with possative mindset etc .. there may be times when it is not so notecable.. or experience periods where im on such a possative track that it may be out of my awarness??? tho it is hard to tell because as soon as the attention / trigger or circumatance appears it is immediatley there... I understand that true HPPD is pretty much 24 / 7 365, tho there are periods of living where being so engaged in life that it may not be so apparent. :) i.e. good times :)

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So it has been 3 days so far ... anything else you notice?

ok well, it is hard to say... pretty much all my visuals seem pretty much the same at the moment.

I may have a slightly diffrent feeling behind my eyes.

To be honest, i have been feeling quite emotional / possible depression.. this may be related to "the benzo abuse episode" on sayerday i.e. ending up in hospital.

I have also been feeling more tired than usual...

Though it is still early days... I am looking forward to getting back into a productive daily routine / and then i feel i will be become more aware and really take notice of any changes / benefits.

Tomorrow is a new day :)

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i am considering increasing my dose to three whole tabs per day.............. what is your opinion on this?

Sounds reasonable. The limit to set for Sinemet 25/100 would be 4 pills a day. So trying 3 isn't bad at all.

If 3 or 4 per day helps, then it is a question of how long you work with it at this dose - a question to workout with doctors.

While low dose for life is without problems, higher amounts for years can cause other problems.

To put this in perspective: they make Sinemet 10/100 of which you can take 10 pills per day. People with advanced Parkinson's disease use this. However at this dose, the statistics are that 50% taking Sinemet for 5 years or longer will develop dyskinesia (involuntary movements).

It is nothing to worry about now since we don't even know if the med will help you. And short term will not cause such problems.

Hope this info helps

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Sounds reasonable. The limit to set for Sinemet 25/100 would be 4 pills a day. So trying 3 isn't bad at all.

Cool ill start that then, did two whole pills today .. ill start on 3 tomorrow :)

If 3 or 4 per day helps, then it is a question of how long you work with it at this dose - a question to workout with doctors.

Absoloutley ill discuss this with the docter :)

While low dose for life is without problems, higher amounts for years can cause other problems.

Oh really.. ok that is good to be aware of.. Jeez i wish there was just some way to get this better....

To put this in perspective: they make Sinemet 10/100 of which you can take 10 pills per day. People with advanced Parkinson's disease use this. However at this dose, the statistics are that 50% taking Sinemet for 5 years or longer will develop dyskinesia (involuntary movements).

Ok .. that does sound quite full on, ill most certainly avoid that one.

It is nothing to worry about now since we don't even know if the med will help you. And short term will not cause such problems.

Totally Agreed... :)

Hope this info helps

AWESOME..... VERY HELPFUL INDEED ... Thanks SOOOO MUCH VISUAL :-) !!!!

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Yes, if 3 pills a day does nothing, then Sinemet (at least by itself) is not needed by you.

Another Sinemet failure, but again without 'crash-and-burn'.

I've noticed that when people try it, either it is helpful (often very quickly) or does next to nothing (no bad side effects common with many medications).

Sorry that it did not work for you. It is always sad to try something with hope but not get results.

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Hey Visual,

Sure yes, i agree that after three whole pills it is not needed by me.

It is ok.. I have not been in the best space the past few days.. im sure there has been certain triggers / stressors tho.. at times finding it way too much to handle, like enough is enough...

It is good to hear there are no bad side effects with Sinamet..

I will be seeing my docter tomorrow... i will get Keppra from him and will be sure keep you all in the loop about that. I will also make inquries about possibly trying FLUNARIZINE too possibly.

Thanks again very much for all your amazing support and insight :)

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