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mtthomas
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Hi All,

I have posted a few times on here and the old message board in the past and have been reading through posts steadily on the site for the last four years. I must say I love the support everyone has given and it truly does give a sense of comfort understanding I am not alone with this disorder.

Just a quick background on my symptoms...

It all started in the Summer of 2007 when I consumed maybe 4 grams of magic mushrooms, my drug history is very limited in that I've tried ecstascy and shrooms only a few times, I haven't touched any drugs (except alcohol) in the last 4 years.

The symtpoms started with visual snow, or like a layer of static over my entire field of vision, this then progressively led to palinopsia and severe negative after images along with a major increase in floaters. This was somewhat manageable until the inevitable dp/dr/cognitive/brain fog/zombie feelings reared their ugly head. This was the absolute worst.

Somehow I've managed to still perform reasonably well in my career (work as an engineer) and I try to mask the symtpoms as best I can but I don't feel like me anymore and it's driving me mad. For example, I have to put every effort forward in a conversation not only to speak but also to listen, it's like my brain can't keep up with the information that is being exchanged. Computer screens and reading are almost unbearable and I can't keep my concentration on any one thing for more than a few minutes! I do manage to get my work done but believe me it's a daunting task.

It's really hard trying to accept this or trying to ignore it when the symtpoms are there 24/7.

The worst though was my girlfriend of a year and a half dumped me about a month ago due to lack of communication and I can't help but feel the DP/DR was a major contributing factor. I genuinely loved this girl. So now I've decided to take action and am not gonna let this disorder dictate my f-ing life anymore.

I did see a psychiatrist for about a year and tried a plethora of medications including Celexa, Zyprexa, Clonidine, Inderal, and Klonopin. The Klonopin I only took as needed and the other meds gave me terrible side effects in the first few days of taking them so I stopped. I have been off all medications for two months and I need to find a new P.Doc as my old one has moved out of town.

Now my question is do you think it's worth taking the trip to Boston to see Dr. Abraham? I've found myself running out of options and need to figure my life out. I'm willing to try new meds including Sinomet which I'm very intrigued by. Do you think I would be a good candidate for this? And how can I convince my future P. Doc to prescribe this?

Thanks for reading. M

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Now my question is do you think it's worth taking the trip to Boston to see Dr. Abraham? I've found myself running out of options and need to figure my life out. I'm willing to try new meds including Sinomet which I'm very intrigued by. Do you think I would be a good candidate for this? And how can I convince my future P. Doc to prescribe this?

If you can afford to go to Boston, he can be very helpful. Not that he will work magic - no doc can. But he can give you a quick drug trial (1 hour) that will reveal important info. And he can give you an actual diagnosis so your docs can use it as a basis for helping you. He will, at your request, send reports to you docs for what they should do.

There is not known 'cure' for HPPD, but it is largely considered manageable with most people being able to lead happy, productive lives - with or without visual crap.

As for Sinemet, my bias is obvious on this site ... it has majorly helped life (though I still have some problems). Getting a doctor to prescribe it for you can be difficult - it is entirely how he feels about it all (and even if he just had a fight with his wife). If Sinemet is going to help you, you will only need very low amounts - yet most doctors are not familiar with using it (and its primary use is Parkinson's Disease which you don't describe as having).

Nevertheless you can ask. Tell him why, and that you only want a brief course to know if it will help you - any reasonable, compassionate doc would do so. As you need to find a new doc, look for this. Also it helps to find one who loves to succeed at solve problems. Be sure to tell him how Celexa, Zyprexa, Clonidine, Inderal, and Klonopin affected you.

BTW - how did Inderal affect you?

Would you list your major symptoms? This may help answer your question, Do you think I would be a good candidate for this? And I am glad to assist if I can. If you haven't already done so, search the forum for 'Sinemet'

Otherwise, best of success...

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Hi Visual, thanks for the prompt reply, I spoke with Dr. A today for about 20 min. and he was very insightful. I will probably just pony up the cash and go down to Boston and see him, at least it will be a starting point and he did mention methods we could discuss to help better manage the symptoms into the future.

As for Inderal, it typically is used for high blood pressure and performance anxiety, presentations, etc. Slows down your heart rate. I took it before a major presentation, pretty much ameliorated the phsyical anxiety (shakey hands, sweating) but the mental anxiety was still there.

What are your major symptoms?

Mine are typically visual static (pixelation) over everything and negative after images (the big two). Trails, halos, starbursts, depth perception, color confusion are minor. I can pretty much drive fine at night. So I think I would be a good candidate for Sinemet from what I've read on the forums.

The most debilitating symptom is the Dis-association including memory, verbal recall, concentration, listening (absorbing information). Just feels like my cognition is completely out of sync if that makes sense. I've starting taking Piractam to help with this but no results as of yet. Have you read any case reports of this nootropic helping in the mental/cognition category for HPPD?

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I tried Inderal for evaluation and is was calming but did nothing else useful. And with a 10% chance of causing erectile dysfunction - this would definitely add to depression (I've got a wife to please. :P )

Sounds like you had a good conversation with Dr A - it is unusual for a doc to spend 20 minutes interviewing you at no cost. Be sure to make a list of meds you have tried and how they affected you - both HPPD stuff and otherwise. This will help the doctor. Perhaps pictures of what you see may help - he will lead the questions but everything that makes for clear communication (something often hard with brain stuff) will help your evaluation.

Haven't got a hold of Piractam to try yet - but there are so many possibilities. Generally, cognition is more connected with norepinephrine and dopamine. Often our cognition problems are actually a manifestation and attention and focus.

As you mention out-of-sync, do you find that sluggish or delayed good be apt descriptions (at least partially)?

Dis-association including... - can you explain this a little better?

Do you have other symptoms not so typically HPPD? - tremer, numbness, fatigue, muscle control differences, speech changes, changes in sence of smell.

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Hi Visual,

I've sent all my medical history including bloodwork, past prescriptions, etc to Dr. Abrahams office and fully intend on taking the trip down to Boston in late Feb.

As for the additional symptoms you mentioned I do have lots of fatigue and speech issues (almost like a form of dyslexia) hard to explain. Typically I find the disassociation is more linked to concentration. I have a very difficult time with memory and retaining information which makes conversation very difficult. For example, I'll be talking to a co-worker and it seems like I'm always waiting on the next thing to say and will pretty well zone out and my mind is constantly stressing how DP'd I am.

One of my biggest concerns are computer screens. All I see is ghosting of the smaller text, after images on larger text (like the google logo for example) and just an overall layer of static. It makes focusing on anything for more than 2 min EXTREMELY difficult. And the more I try to focus for an extended period of time, I will start getting this head pressure feeling (like a vice is squeezing my head slowly). Basically my concentration and focus are completely not there. Is there anything you would suggest in this department especially to help with reading?

Also, I did manage to get ahold of Sinemet from my GP. I took one does of 12.5/50 and it didn't seem to do anything, good or bad. Would you suggest upping the dose or just keep taking the same dose for the next few days to see if I feel an effect? Much Appreciated.

M

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  • 2 weeks later...

Sorry I missed your post so long (brain dead here)

What did your GP say about dosing? If you don't notice anything at 3 pills a day for a week, then it probably isn't a med for you.

Your trip to Boston should be helpful (let us know how that goes)

Cognition often involves norepinephrine as well as dopamine. Focus and attention being big ones. [ note ADHD drug such as Adderall do this ]. It is hard to know what meds are best. Have been told to increase Wellbutrin for this but am limited in tollerating higher amounts. Also, any increase of DA will trickle down to NE since NE is made from DA.

So many with HPPD suffer some of the additional symptoms you describe. Yet for me, these lead to a diagnosis of 'toxic encephalitis' instead of just HPPD. TE involves demyelination (and I suffer primary and secondary demyelination). Haven't heard of demyelination connected with HPPD ... something to start Googling.

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