Merkan

The thread about dopamine agonists and supportive agents (e.g levodopa and reuptake inhibitors)

68 posts in this topic

I feel like I should also say I've been participating in a clinical trial recently for MRT which is an offshoot of TMS. They use EEG and fine tune a proticol for how much juice they flow into you based on what your brain needs. A step up from TMS where they just have a pre set amount they give to everyone.

The doctor said my Brain waves looks similar to someone with schizophrenia even though I don't have that. Found that to be very interesting. They've corrected a lot of my brain wave function however I feel like my HPPD symptoms are masking any measurable positive outcomes from this. I think I could ask the doctor to specifically focus on some different areas of the brain related to HPPD. Any suggestions?

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Sometimes I'll take Keppra before bed to help sleeping.  Thats about it.  In general, try to work with least amount of meds.

 

HPPD and TBI can have similarity, it just depends on the nature of the brain injury.  HPPD is sort of a chemical injury, at least in some cases.

 

Often people with HPPD are hypersensitive to, or at least have negative experiences with, all sorts of things: light, alcohol, meds, coffee, exercise, ...   Sometimes something works a little while then doesn't.  Its a drag.  However, think of it like a detective story that you just have to keep looking for clues and note how you respond to things.  At the same time, one has to not spend too much time dwelling and researching ... or it can drive you buggy.

 

One thing that helps is CBT.  Just figuring out how to improve life and regulate feelings is helpful.  In one place, Dr Abraham says its the single most important 'treatment'.  Anxiety, depression, and even guilt over what has happened are often the worst feature of HPPD.  Strange as it may sound, there have been members who say they like HPPD and are happy with it --- clearly they are not suffering terrible anxiety or fatigue.

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Ah okay, I only asked cause you seemed hyped about the Ned two years ago.

Yea strange like that. I have a friend who describes himself as "more stupid, more happy" from his hallucinogen use/hppd. Then again he was and still is a genius so I guess he didn't feel like he needed to sacrifice much.

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Genius or idiot, there is a lot to be said about happy.  "He told me there was only one man in the town who was happy altogether: the village idiot" - Darby O'Gill and the Little People

 

Am still hyped about what I take because it has given me back half my life: Sinemet + Amantadine + Cabergoline + Gabapentin + a pinch of Keppra.  Because its such a chemistry soup, one can't exactly recommend it to anyone else, lol.  But half a life is better than less even if it isn't a whole.  Am stunned with how cabergoline has helped unexpecting things ... but how can one recommend an ergot that when taken long term can damage heart valves?

 

 

i have fear for parkisionan effects..... im to young for that 

 

You mean meds like SSRIs or antipsychotics?  Or you mean just taking Parkinson's meds?

 

An important distinction between needing PD meds (or even Parkinsonism) and Parkinson's Disease is that common Parkinson's Disease (most correctly Idiopathic Parkinson's Disease) has a very predictable progress and outcome - only the rate that one will decline is unknown.  [ figures that word 'idiot' would come up twice in one post ... the mind must be slipping away ]

 

HPPD isn't a progressive disease though it make take months to 'peak' in its awfulness ... and then even jerk some around with shifts and changes over the years.  Also, most HPPDers get better.  PD is a one way street.

 

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Haha great quote visual!

For the sake of this thread would you mind posting how much Sinemet, amantadine, and cabergoline you take and the frequency? Also, if you have any studies that would support prescription that would be amazing :)

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Unfortunately, there are no studies to justify the meds I take – HPPD and TE have no established treatment protocols.  Its very important to find compassionate and cooperative (helpful doctors).  To persist in finding them.  And to patiently work with them.
 
While it is impossible to describe the details of 8+ years of dealing with TE, here is a synopsis:
 
Labs: various blood tests, eye tests, a sleep test, neurocognitive testing, EEG, MRA, two MRIs, VEP
 
Doctors: ~20, most useless, some obnoxious/deprecating, and then a few with at least some info and/or willing to try things
 
Drugs tried (so far): Abilify, Amantadine, Ambien, Amitriptyline, B12 Injections, Benadryl, Benzatropine, Cabergoline, Clonidine, Depakote, Effexor, Fioricet, Flexeril, Gabapentin, Hydrocodone, Imipramine, Inderal, Keppra, Klonopin, Levothyroxine, Lexapro, Lidocaine (injection), Lorazepam, Nuvigil, Patanol, Requip, Selegiline, Sinemet, Skelaxin, Temazepam, Tolcapone, Tramadol, Valium, Viagra, Wellbutrin SR, Xanax, Zoloft.  (this list omits various antibiotics/antimicrobials, asthma meds, eye drops, and stuff thats slipped the mind)
 
Then there are the alternatives: Acupuncture, Acupressure, CBT, coffee enigmas, massage, microcurrent therapy, and hundreds of supplements and herbs.
 
Costs: many thousands of dollars.  A couple thousand hours or more researching.  Tears, frustration, anxiety, depression, anger... the whole roller coaster

 

 

Now for the drum-roll ....

 

Chemical Soup:  (trust me, if you don't need this stuff it'll make one sick)

 

Carbidopa/Levodopa 25/100mg  (Sinemet)

Amantadine 100mg

Cabergoline 0.5mg

Gabapentin 300mg

Keppra 750mg

 

06.00  1/2 Sinemet, 1/2 Cabergoline, 1/2 Amantadine

14.00  1/2 Sinemet, 1/2 Cabergoline, 1/2 Amantadine

20.00  1/2 Sinemet, 1/2 Cabergoline, 1/2 Keppra, 1 Gabapentin

 

Ironically, in spite of all of this, the body is healthy ... just the brain problems.  Most of this stuff is considered low dose, but the ergot carries a significant long-term risk to the heart.

 

 

In the end, each will need to find what works for them.  But hopefully sharing such experiences will aid individuals to derive help more quickly.

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I an on pretty muck the same as visual, tried the same stuff etc. I do however use clonazepam. Hate that i need it. I also use a lot of supplements like fish oil, magnesium, vitamin D and a low carb diet.

Keppra 750

Sinemet 25/100

Clonazepam 0.5 mg

10.00 1 1/2 clonazepam, 1/2 Sinemet, 1 Keppra

14.00 1 1/2 clonazepam, 1/2 Sinemet

18:00 1/2 Sinemet

22.00 1 1/2 clonazepam, 1/2 Sinemet, 1 Keppra

Would love to have the courage to get rid off the clonazepam and see what happens

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I an on pretty muck the same as visual, tried the same stuff etc. I do however use clonazepam. Hate that i need it. I also use a lot of supplements like fish oil, magnesium, vitamin D and a low carb diet.

 

Hey Merkan, Check this thread: http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/

 

For 3 weeks have been trying TPP (specifically the cocarboxylase product mentioned).  Its helping a number of symptoms and reducing (perhaps eliminating) the need for cabergoline.  Since we have some similarities, it would be interesting to see if you notice anything.  I've never had a supplement act like a med ... let alone a low dose vitamin.  Turns out there is a massive link between dopamine and thiamine, also thiamine and the whole nervous system.  In my case, I don't seem to have the ability to absorb 'normal' thiamine.  Perhaps you also have B1 issues?

 

At any rate, it is cheap and safe to try.

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I'll try that. As long as its something that does not require to change my routine i am on it. Hope its available over disk here.

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Visual, when you took Wellbutrin did it increase any of your visuals? Also was it a decent antidepressant?

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Visual, when you took Wellbutrin did it increase any of your visuals? Also was it a decent antidepressant?

 

Wellbutrin reduced visuals.  Not much for depression although it was truly uplifting to find a positive response to visuals, etc.  Wellbutrin ultimately increases anxiety/agitation which ultimately destabilizes emotions ... which increases depression.  (Its a circle of life thing, lol).

 

 

I'll try that. As long as its something that does not require to change my routine i am on it. Hope its available over disk here.

 

 

Its on Amazon, etc ... though don't know about stores in Sweden.  It won't change routine.  If you can't find that specific company, you can try searching first for Thiamine Cocarboxylase.  If not successful, then try Thiamine Pyrophosphate.  Of course each deviation could dilute the test, but in principle it would be worth trying.  I appreciate your trying ... and hopefully you'll benefit.

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Does Wellbutrin cause an increase of anxiety and agitation in everyone? Is it dose dependent? Also if added a serotonin antidepressant(one that works for me) would that decrease the anxiety/agitation?

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Does Wellbutrin cause an increase of anxiety and agitation in everyone? Is it dose dependent? Also if added a serotonin antidepressant(one that works for me) would that decrease the anxiety/agitation?

 

It varies from person to person but as a rule Wellbutrin is not prescribed for anxiety, only depression.  Perhaps someone with ADHD would find it calming since that is the tendency for that particular dopamine disorder.

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That's great to hear as I've always thought I've had adhd/add before j got this fuckery of a disorder. Still it would be nice to know if my depression was a dopamine or serotonin deficiency

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That's great to hear as I've always thought I've had adhd/add before j got this fuckery of a disorder. Still it would be nice to know if my depression was a dopamine or serotonin deficiency

 

Its hard to know.  Just have to try things.  Also, depression and anxiety are often situational, either whole or in part.  Never underestimate the power of CBT.  It sounds too simple but there is much to be gained by learning better emotional control.  It is also annoying trying to find someone you feel you can open up to and able to help you.  It probably won't completely fix depression but it can help.

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Ive tried Wellbutrin. It made me anxious but didn't have any permanence in terms of HPPD and I haven't heard that from other users. Whenever taking a new medication for HPPD you have to weigh whether it could make you worse. Wellbutrin doesn't seem to do that so go for it you can always stop.

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I wanted to give an update on my sine met use: had to discontinue >_< a few weeks after starting last December I developed a flaky rash on my face near my nose and on my back and groin. I thought it was something I picked up from a hot tub but unfortunately it was the sinemet. By the end, just taking even a quarter of a 25/100 would send my skin into a burning rampage. Such a shame it really helped.

At least it stopped my muscle fasciculations.

Unfortunately my upper life area might be kind of reddish for the rest of my life >_< every few weeks I have to use topical steroids to calm it down so it doesn't peak but it is red.

Thank god for facial hair.

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