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Strong HPPD after laser eye surgery


Trippy Racer

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I would help if you describe all you non-visual symptom.  Anything besides the fingers?

Currently, I have physical symptoms such as: numb two fingers (V, IV of left hand), Lhermitte's sign (I never took any SSRI or other medicines), sometimes uneven pupils (right pupil is a little bit bigger), warm in right part of head (florid right ear), formerly the dizziness, I feel I'm falling down when I go to sleep, sleep apnea and sleep paralysis, stiff neck and muscle spasm. I take magnez, b12 vitamin and fish oil.

I have had brain MRI with contrast (OK). I will have soon MRI scan of the cervical spine, but I think that everything is alright.

Visual, I would like to ask one more question for you. Do you ever hear about the HPPD'ers with only positive afterimages of everything? What is simplest to cure (positive or negative afterimages)? Could you please advise some medicines for it?

I am very thankful for any help, I wish you all the luck and patience  :) 

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Chris I think you need to bare in mind that this forum is for open minded discussions, if you think someone is wrong don't you think it's better to say that and present your argument so it can be discussed? You seem to think your own personal experience and theories are the right ones and that gives you the right to quickly and rudely dismiss all others. I hav returned to this board today for the first time in a while and noticed your posts are mostly antagonistic which is extremely unhelpful for all the confused people that need advice. Also FYI i notice you only joined in October, and maybe if you'd been on this board a little longer you'd have seen how many people really do come and go having mostly or fully recovered, people such as myself. It's alot of people I can tell you. The number of people with temporary cases is actually quite high, just thought you'd like to know ;)

 

Erghh. Where to start with this utter nonsense. Firstly, FYI, this had been peaceably resolved; but well done you for chiming in and opening it back up again.

 

I'll take your points in order.

 

Firstly, I don't know what you think I was doing other than saying that the point made was wrong and then presenting an argument. I tried at all times to stick to the point at hand and not slide into insults (not easy when you are being insulted). Indeed, all I did was challenge the point and I was then personally attacked - who was really being rude here? No, I don't think my personal experiences and theories are the right ones. The first part of this doesn't make sense. As to the second, I don't really have any theories. I just go with information I find from the research of others more qualified than myself.

 

Secondly, based on such information and my own education if I see a post that is asserting something as fact which is not true, or at least possibly or probably not true, or someone using bad logic in their argument, I will challenge it. This, I believe is the responsible thing to do and I hope others would do the same to me. I have admitted myself that my tone can be abrasive at times but I am not trying to deliberately antagonise.

 

I don't doubt that many people come and go from the site and that this can be a temporary condition for some. Indeed I acknowledged this early on. But, without doubt the number of people with long-term or permanent cases is very high too ;)

 

Which gets to the nub of why this argument started. No one can say that there are very few permanent cases of HPPD. This is false and could give someone false hope. Just to clue you up: hope = good/important. False hope = negative/potentially harmful.

 

As Jay said "This can be a lifelong illness, and for long term sufferers, that acceptance can be strangely therapeutic."

 

I couldn't agree more.

 

By the way, this is the nice version. To say what you said and in that tone after all the ways I was personally attacked and only address the actual point of the debate in your last two sentances shows a fair amount of irresponsibility. Try me on this again and I have lot more to say.

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Currently, I have physical symptoms such as: numb two fingers (V, IV of left hand), Lhermitte's sign (I never took any SSRI or other medicines), sometimes uneven pupils (right pupil is a little bit bigger), warm in right part of head (florid right ear), formerly the dizziness, I feel I'm falling down when I go to sleep, sleep apnea and sleep paralysis, stiff neck and muscle spasm. I take magnez, b12 vitamin and fish oil.

I have had brain MRI with contrast (OK). I will have soon MRI scan of the cervical spine, but I think that everything is alright.

Visual, I would like to ask one more question for you. Do you ever hear about the HPPD'ers with only positive afterimages of everything? What is simplest to cure (positive or negative afterimages)? Could you please advise some medicines for it?

I am very thankful for any help, I wish you all the luck and patience  :) 

 

First, not sure of HPPDers with only positive afterimages (if that is what you mean) ... but with HPPD, a person might have only 1 or 2 symptoms.  You'll see about half the members on www.dpselfhelp.com who just have DP/DR from drug use ... since it is only that, they don't usually consider themselves as having HPPD. 

 

Finding the 'cure' is a bit of a holy grail ... but there are good things to try.  As you have posted, you already have improvement, at least with other symptoms.  I have positive afterimaging but it is a brief flash that occurs only after looking a bright object, such as a light bulb.  In more ordinary settings, it is not discernable.  Negative afterimaging has been much more a problem, but responded well to Sinemet.

 

The medical tests you are getting will be helpful for ruling out other possible issues though not likely to really show anything.

 

 

The absolutely most important thing I could recommend to you (and most here) is a 'nerve-tonic for brain repair' I've posted in a number of places. Except for GPC, it isn't expensive - and you don't need to take it daily. Please read post #18 in http://hppdonline.com/index.php?/topic/785-strange-leg-sensations-tingling-burning/

 

With numbness and Lhermitte's, consider that your experience with 6-APB affected your peripheral nervous system as well as the CNS (the HPPD stuff).  Both these symptoms can involve myelin damage outside the brain.  Again, this nerve-tonic can be very useful for you - I also had numb left fingers and these 'fixed' with this 'tonic'.  There are more natural things to consider, but it is a bit long for a single post.

 

For what it is worth, my official diagnosis is toxic encephalopathy since symptoms were more that just HPPD.  But plenty of other members have 'additional', non-HPPD symptoms that showed up in the same time periods.

 

 

As for medicine recommendations, seems that most folks get help with Klonopin although I am not one of these.  But with uneven pupils, stiff neck, and muscle spasms, consider Sinemet 25/100 if your doctor will work with you.  If you have bad anxiety or agoraphobia, then you will want Klonopin before and/or with Sinemet ... however, if you desire "to going 300 km/h", then perhaps you don't have anxiety, lol.

 

A few other members have reported pupil size issues, though usually they are just large.  I have uneven pupils which occur with an obscure pseudo-anxiety pain.  Gabapentin resolves this.  Merkan, another member, had pupils improve with Sinemet.

 

 

Hopefully this is helpful to you.  You never know if a medicine will be useful until you try it or a combination.

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Visual you mentioned that you use Gabapentin. Other than resolving your pupil issue, do you notice any other relief?

 

It reduced light sensitivity, particularly in the peripheral visual field.  Also helped a lack of darkness when eyes were closed, but several other things help this as well.  It reduces muscle pains but not spasms or tension.

 

But with general HPPD symptoms, it doesn't do much.  The weird pseudo-anxiety is helped, but this is very different from 'normal' anxiety or panic anxiety - don't recall other members describing having this kind of weird anxiety.

 

I would think that people who get help with Klonopin might benefit with Gabapentin as something to cycle with or help lower Klonopin amounts.  Elsewhere some have mentioned using it to help with Klonopin withdrawls.

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  • 4 weeks later...

Visual, I have good news. All the non-visual symptoms including Lhermitte's sign disappeared after taking methylcobalamin 5000 mcg sublingual tablets (b12 deficiency symptoms: anxiety, depression, headache, numbness, muscle spasms, Lhermitte sign's). Therefore maybe it is not a toxic encephalopathy?

I would like to ask one more question for you. In my country the nerve-tonic for brain repair like GPS is only on prescription and Sinemet is only for Parkinson's patients, so I bought "more natural things" like Mucuna pruriens, Gotu kola (nerve cells regeneration) and St John's wort. Do you think it might help?

I am very thankful for your help, keep well  ;) 

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CDP-Choline is a good substitute for Alpha GPC, from what I recall from experimenting with Piracetam. Check the Longecity forum if you want to know more about nootropics, they have a little niché going on there.
Also, I haven't read through the entire topic, but I thought B6 was good for those things? 5000µg B12 is a lot though.. that's 200000% of daily need I believe?
Glad you're doing better :)

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It is great that you are getting response ... few have tried this simple "brain/nerve tonic".  The most important part is the B12.  I've restored both paralyzed (not just paresis) dogs with this years ago - never even thought about using it on self until getting messed up.

 

Its too bad you can't get GPC.  However you can use phosphatidylserine and/or phosphatidycholine (lecithin) in place of this.  Because I was allergic to soy and 99.9% of all lecithin in the food supply (and supplements) is from soy, I used GPC.  It is 2 steps down the metabolic chain from lecithin, in water soluable (not lipid) form.

 

 

CDP-Choline is a good substitute for Alpha GPC

 

Actually, while both these products look interesting with focus on both acetylcholine and dopamine, neither of these is what is needed for this particular "nerve tonic".  What it is being used for is lipid material for neurons (and axons).

 

The mechanisms for this "nerve tonic" (where's the damn trade mark? lol) are:

 

    1)  Methylcobolamin is a metabolic stimulator (methylization being one major metabolic process).  It fuels nerve regrowth/repair in body and brain.

 

    2)  GPC, PS and PC are lipid building materials - absolutely required for maintenance and growth of nerve tissue (the brain is mostly fat - - - so it is a complement to be called 'fat-head')

 

    3)  MSM fuels another metabolic process: Sulfation.  This has many function including protein interactions and 'intertwines' with methalization.

 

The secondary items listed: "Vitamin C, NAC, Vitamin E (mixed tocopherols), and a little selenium" support detox and clearing intermediate metabolites.  Lion's Mane has nerve growth factor (though I can't say for sure how much it helps).

 

 

5000µg B12 is a lot though.. that's 200000% of daily need I believe?

 

The 'daily need' reports are suspect.  But, yes this is a lot.  However, you could probably use this daily for the rest of your life without your life being shortened.  In general, mega-dosing of anything should only be done on short term basis. The body adapts and in many cases it causes other imbalances.  One example is high-dose-fish-oil, which is supposed to reduce inflammation - but after two weeks, high dosing actually increases inflammation.

 

It has been my experience that the 'pulse dosing' B12 works a lot better than continuous ... and certainly it would be safer, if there are concerns.

 

There is a field of care called Critical Care Nutrition.  It is using high doses of nutrition to keep people from dying during various emergency crises.  Very interesting field.

 

 

Therefore maybe it is not a toxic encephalopathy?

It is hard to say.  It is my thing to call HPPD a form of TE.  However my docs observed peripheral and cognitive problems as additions to HPPD and thus the TE diagnosis.  Lhermitte's sign is a peripheral condition, not CNS, which would be a nerve damage outside the brain from the drugs you took.

 

The work "toxin" is interesting to think about in this context.  In essence, whenever anything builds up faster than your cells can clear it out, it is toxic (damaging).  Whether the drugs you took were 'tainted', or dose too high (or too high for your genetics or current 'toxic burden') is an unknown.

 

The 'nerve tonic' would help brain and body nerves.  Improving your anxiety and depression would primarily be brain function.  Great stuff ... keep us updated!

 

 

Mucuna pruriens, Gotu kola (nerve cells regeneration) and St John's wort. Do you think it might help?

Doesn't hurt to play with these and see.  I don't expect anything fantastic, however, you just don't know ... and combinations can be powerful keys to unlock problems.  And that is what we have, a combination (lock ;)) of problems...

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There is always hope my friend, just keep a positive mindset and you will more than likely overcome this. Keep in mind, there are very few cases of permanent hppd. Most cases clear up in months but it could possibly take up to a year to recover normal vision. A lot of my symptoms have actually cleared up. Im still in hell, dont get me wrong, but there is always hope for you and me. Just be glad your dp/dr isnt constant. Keep your head up :-)

I don't mean to take away hope, but it can take over a year to recover. So for all of you that are still noticing decreasing symptoms after 1 year, it's probably going to take another year for zero symptoms.

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I don't mean to take away hope, but it can take over a year to recover. So for all of you that are still noticing decreasing symptoms after 1 year, it's probably going to take another year for zero symptoms.

 

Long recoveries are harder to evalute.  Not just what helped you to get better.  But also how much better are you.  After long periods of time, you get used to stuff.  So in my case, some things are a lot better - no question or debate.  Yet other things are, "Oh yea, that is still going on".  It isn't just an acceptance thing ... its just plain accomidation (getting-used-to / finding-other-ways ... like Def Leppard's one armed drummer)

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