Keppra vs sinemet vs lamictal- need advice!

[Buddikaman82]

I am trying to see a neurologist soon who my psychiatrist recommended me to.

I am not really sure what meds to push for, for my HPPD and dp/dr. I have heard of success with sinemet and keppra and even lamictal. Which one or which combination should I push for first?

Also if I see this neurologist and he has never heard of HPPD how do I convince him these meds will help?

I could use some insight into this, I simply cannot live my life like this any longer, the visual snow is destroying me. I'm trying to get on one of these meds ASAP so any help is appreciated!

[VisualDude]

To begin, first it would depend on your symptoms. Second, generally it would be good to discuss all with your neurologist. Third, some will depend on what your psychiatrist has diagnosed you with and his report to your neurologist.

Naturally it would help to have a large database of symptoms and the meds that helped (as well as those tried)

A few points to recap,

Lamictal – has some support for off-label treatment of depersonalization.

Klonopin – seems to be the ‘workhorse’ for management

Keppra – has reports for visual snow (a main symptom you mention of yourself)

Sinemet – has the fewest reports. It seems to help anything to do with visual contrast processing including motion and halos, as well as some more ‘external’ symptoms (depression, libido, pains and spasms, ...) . There are some reports of helping DR though not in my case.

It also may require combinations (which makes things more complicated)

Sorry this isn’t definitive, but HPPD is very individualistic. Hopefully this helps with ideas and some focus

[Buddikaman82]

I do suffer from depression and anxiety but I'm convinced this is a result of my introverted lifestyle not a chemical imbalance.

The real killer for me is the visuals and dp/dr.

Visuals include massive visual snow, tracers, lingering geometric after images, sensitivity to light, and depth perception issues.

My dp/dr can be described as tripping on a low dose of LSD.

So I'm leaning on keppra or sinemet, which might you recommend starting off?

I recently started lamictal but consider it a mild relief drug.

[VisualDude]

How and why is your lifestyle introverted?

As far as visuals, a few more questions:

How is your vision at night or in dim lighting?

Difficulting watching TV?

Do you have 'tunnel' vision?

Are you 'hyperresponsive' to movement in your peripheral?

Do you see color distortions (like seeing purple everywhere)?

Have you tried Klonopin?

[Buddikaman82]

I was always really social and athletic growing up. When I was 17 I took a hit of LSD and had a bad trip. Besides the HPPD I also felt detached from reality and lost a sence of who I was. I had a hard time relating and interacting with people and became very withdrawn and introverted. I dropped out of high school and hid in my room all day. This on top of my visuals made the world and the people in it a scarey place. Looking back I think my bad trip triggered a possible social phobia. During most of my 20s and to some extent even today I still have this feeling of being withdrawn and find it much less stressful to just avoid social interactions and public places all together. This is what triggered my depression and anxietys.

My night vision is terrible, fluorescent lights give me a strong glare and I cannot have lights in my field of vision without grimacing. Sunlight is different. I have no problems with sunlight and often can have it shining in my eyes without any discomfort. I love sunlight.

I cannot watch tv at all. I watch the walking dead once a week and it's all I can handle. It destroys my eyes and I can't figure out why.

I DO have MAJOR tunnel vision. This one I can't stand, it makes it so hard to talk to people.

Yes I would say I am hyper responsive to movement in my peripheral, sounds about right.

Color distortions I'm not really sure. I can't say I see purple everywhere.

I tried klonopin for years, it made me feel slightly better but would make me very tired and groggy the next day so I eventually switched to Xanax for the shorter half life. I can only take benzos at night.

Thanks for your questions, I really appreciate you taking the time to help me out.

Also what does all this mean? You are asking me questions that are dead on and have perplexed me for years.

[VisualDude]

Most of the symptoms of HPPD are very subjective to describe - hence lots of questions [ After all, most of us are just people, not linguistic PHDs ]

My personal experience excludes stuff like CEVs, geometric patterns, and seeing smears/streaks of color. And these exclusions seem to be the least to be helped by increasing dopamine (Sinemet). However, sluggish motion (walking, TV), trails, negative afterimages, halos, depth perception and contrast (night vision, TV) have had very strong positive responce for me. As with yourself, sunlight is great. I find yellow light the worst (incandesant or high-pressure sodium street lights).

That said, based on your info so far, it appears that Sinemet may be your best bet. And probably some mild antiseizure type meds (such as Gabapentin or Keppra).

I have very little visual snow and then only in dim light and when my dopamine levels are low. Am not sure how effective Sinemet alone would be for your VS (which is substantial).

So these are some thoughts for starters.

Some more questions,

What does your psychiatrist think? Does he think HPPD?

How much Klonopin did you take?

Do you feel you have attention/focus difficulties?

Feelings of sensory overload (too much info)?

Some thinking tasks are sluggish yet others are as quick as ever?

A little bit of short-term memory issues?

[Buddikaman82]

My doctor assumes HPPD but Only because he had no idea what else it would be.

I am 'dreading' seeing a neurologist I just know they will not want to give me sinemetic or keppra. I am talking to dr Abraham about a possible visit to Boston.

I took 1mg of klonopin at a time for a few years.

Yes I have focus issues and brain fog.

Yeah sensory overload for sure.

My memory is not to bad and I am ver articulate, just not so much face to face because of the visuals.

[VisualDude]

Your doctor's assumption sounds good - so many just react to anxiety with visuals as being psychotic, which sends one down the wrong path

It is good to see Dr Abraham if you are able. He can provide useful direction and forward the info to your doctors. Even his willingness to return calls promptly and speak with you is exceptional and impressive.

Much of what you describe was helped with Sinemet, some symptoms greatly and others just slightly. The light sensitivity and hyper-response was helped with Gabapentin. Klonopin has very little effect on visuals. The amount of Sinemet is small (1/2 pill of Sinemet 25/100, 3 times a day) and dose can be PRN as well. Initially Gabapentin use was high but now is 300mg 2 times a day. I've also found some simple (and somewhat unusual) visual exercises were helpful with hypersensitivity.

It is hard to know what your neurologist will try. Likely he will order an MRI and EEG to rule out major stuff (as if your HPPD isn't major ). While less common, neurocognitive tests can be useful - these are tedious written and oral exams (6-8 hours worth) that test different areas of brain function.

One neurologist I saw was quite familiar with using dopamine with brain injuries. A neurologist (in USA) will more likely try Requip before Sinemet - which is ok. I found it affected visuals but was not near as useful as Sinemet. Another med that is much easier to get is Wellbutrin. This is actually useful but can only tolerate small doses (1/2 pill Wellbutrin SR 150mg, once a day in the morning). This med is 'rougher' than Sinemet since it has more action on norepinephrine. So if you end down this path, just keep the dose low. For what it is worth, attention and focus are largely treated with norepinephrine.

It sounds like you are working down a good path. If the doc ends up being a poop, don't get discouraged since there are hundreds more to try. But if your psychiatrist is already saying HPPD, this should prep the neurologist to be more helpful.

While it is good and proper to communicate that you have anxiety and depression, don't act highly anxious. Instead draw attention to the visual problems, feelings of overload, and focus and brain fog issues. Also, discuss that from your understanding Klonopin is the best management for HPPD but it hasn't worked for you. And that there are positive reports about low dose Sinemet (30-50% help) and would he consider a two week trial.

Perhaps ask if you might have a mild brain injury, a toxic encephalitis - this may help point his attention in a productive direction. Please don't be scared or worried about the idea of "brain injury", I know it can really push some people's buttons. What you know for sure is vision, etc., are not working in a normal fashion. Whatever it is called is irrelevent from what your life is like. But what it is called can greatly assist your doctors it helping you. Part of your goal needs to be building a working relationship with them. Once this developes, they are more willing to prescribe just about anything. [For what it is worth, I've tried over two dozen meds]

Hope this helps.

Do you have tinnitis?

Do you feel pressure in your head sometimes?

[Buddikaman82]

Do you know if by going to see dr a in Boston if he might be willing to work with me on a treatment regime? Or is it mostly a diagnosis + trial drug basis?

I asked him but have not heard back, and I need to decide ASAP which course of action to take.

[VisualDude]

I don't know. To be continually worked with you would need to live in the Boston area. But it would seem he would get you started (get your doctors up to speed).