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    • By Deleted account
      >Visits the doctors about HPPD, doctor doesn't know anything about HPPD
      >Tells doctor about persisting drug-induced hallucinations and panic attacks, gets referred to a drug and alcohol service
      >Makes it clear that there is no history of addiction or continued use, gets referred to psychiatrists
      >Open to suggestion, trying not to be classed as a drug-seeker, I accept the anti-psychotic prescription Seroquel
      >Takes Seroquel, makes HPPD worse, notifies doctors of this 
      >Is offered SSRI anti-depressants for panic attacks, rejected them
      >Prescribed antipsychotic Olanzepine (Zyprexa), which doesn't do anything for HPPD, and Diazepam (Valium) for panic attacks, which also does nothing
      >Moved to a mental health facility so that doctors can sort medication out
      >Psychiatrists conclude that panic disorder can fix itself and that the HPPD visuals are psychotic hallucinations
      >Prescribes Aripiprazole (Abilify), and took away the Diazepam, which made HPPD worse, and induced anxiety and hypertension (high blood pressure)
      Psychiatrists insist that benzo's are unsafe and should only be used short term due to risk of addiction, despite no history of addiction and the thousands of milligrams worth of any benzodiazepine it would take to actually be fatal. 
      Big fuck you to every single doctor out there who hasn't done their research and has treated every HPPD patient like this. I have already explained to them that the most effective treatment for HPPD include anti-convulsants, but they do not listen. Instead they want to chuck as many anti-psychotics and anti-depressants at me as possible, hoping that I will come across one that will eventually kill me. These doctors are not here to help, they are here to kill and deny effective treatment. Even if addiction were a problem (which is not if you do not abuse medicaiton),  I'd rather be addicted to a drug than have HPPD for the rest of my life. Now I will proceed to seek medication illegally because this medical system has failed me. 
       
       
       
    • By Soup21
      So a couple months ago I started having HPPD symptoms: visual snow, anxiety, tinnitus, problems with contrast, night vision, visual acuity (sharpness vs cloudy), depth perception kinda, halos, glare(light sensitivity). My symptoms were very distressing at first, but they aren't really that bad(especially compared to many people on here it seems). I've gotten used to a lot of them, and I don't really seem to have the brain fog and DP/DR a lot of people on here have, maybe on occasion but for the most part I'm free of them. Its only been 2.5 months so I'm hoping my sypmtoms will decrease/go away, though if they don't I can live with this. My main problem is I also have ADHD though, which complicates things, because taking my stimulant medication has made the snow and other visuals far worse, though it helps with adhd symptoms. I stopped taking my medication, and I was already having school problem, which really stresses me out. I heard from some people on keppra that it could improve my symptoms and maybe even make it so I could try my stim adhd meds again, though the data is rocky. I decided to try it out, and just started my Keppra regiment today with 500mg. I'm going to try this for around a month or so, hopefully the side effects aren't problematic &/or reduce or go away quickly if I have them. I'm optimistic that it will improve my symptoms, even if marginally. But the great thing is, even if it doesn't, I'm really taking it to see if it will allow me to take CNS stimulants without exacerbating my symptoms. For people on this site, as few as there were, that tried both Keppra and CNS stimulants, it seems to be a 100% success rate, so I'm hopeful. Also would be nice if I could drink on occasion without a 3-4 day HPPD exagerated hangover. 
       
    • By ddiddy66
      This is day 2
      250 mg 2x a day
      I also take Effexor
      symtoms:
      visual snow
      frontal head pressure
      trails
      brain fog
      fatigue
      DR/DP
      patterns moving
      walls breathing
      feel kinda crappy all the time
      I have not had anxiety attacks or general anxiety for years
      I've had HPPD for 25 years
      Day 2- only thing that might be from the med is I feel more impulsive, almost a little agitated.
    • Guest
    • By Shadowplay
      Happy new year!
       
      Mine's probably gonna suck but things are getting a bit better.
       
      I've been on Keppra for roughly 5 weeks now, started at 250 mg a day, and I'm now at 2x 500 mg day and night.
      I can't describe this in the percentages as this disorder comes in waves for me. For example on some days I still question who I am, where on some days I almost feel completely like myself. Visuals seems to be quite stable though.
       
      Improvements:
      - DP/DR reduced
      - Brain fog reduced (cognition improved).
      - Trails slightly reduced
      - Starbursting slightly reduced
      - Stopped losing a lot of hair (can be related to something else).
      - Visual snow reduced
      - Floaters slightly reduced
      - After-images (but I barely had them in the first place).
      - Emotions improved. (I can laugh more often and I can cry which helps with the anxiety). Not sure if I'd prefer the comfortably numb feelings though, but I guess not.
      - Memory: I can relate to memories better.
      - Neck pain is improved.
      - Eye strain improved (fuck yeah!) I hated this so much, and now I barely get it anymore.
      - High feelings gone. (kind of suck but I guess I won't miss it that much because it felt really wierd).
       
      Worsening/Side effects:
      - Anxiety, I was completely anxiety free when my HPPD started which lasted for 3 months but now it's rough. Maybe it has something to do with depersonalization lifting. That I'm actually dealing with more feelings now.
      - Depression. (could also be caused by different reasons, as I was heavily depressed prior to Keppra but I know there is a general 6% chance in Keppra patients to experience this)
      - Extreme tiredness randomly occured twice. Don't get it anymore. I don't do much during the days though, it might be different in an active life.
      - Easily irritated first weeks.
       
      Things coming up:
       
      I will talk to my neurologist this Thursday to get some more Keppra and will probably increase the dose to 1500 mg a day. I will stick to this dose for a while.
       
      I might ask the doctor for Naltrexone for the dissocation. A lot of positive vibes here regarding that: http://hppdonline.com/index.php?/topic/68-success-with-naltrexone-read-this/page-2
      There's also another study with some great success: http://www.ncbi.nlm.nih.gov/pubmed/15876908
       
      Life in general is still a living hell, but if these improvements keep on coming I might get out of it alive.
       
      I got a new goal in life too: To study biochemical medicine to cure us and our children. Hopefully I'll be able to get my feet back on track to be able to do this as soon as possible.
       
      Take care everyone,
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onedayillsailagain

The quest to acquire Keppra

51 posts in this topic

Hello everyone.


For the past 3 months I've been trying to get my hands on Keppra.
Amazing how I could walk across the street and score some heroïn (not that I ever would), yet getting a medication seems almost impossible. I just came back from my doctor whom I showed the DSM pages that cover HPPD, and the study on the efficacy of Levitiracetam (Keppra) on HPPD. Neither my doctor, nor my psychiatrist, deem themselves competent enough to deal with HPPD, let alone prescribe me Keppra. Subsequently I have an appointment with a "addiction doctor", who "might have more experience in the area". I can't stop thinking: "This summer is going to pass without me ever being able to enjoy a single ray of sunshine".

 

I was told the "addiction doctor" will perform a series of neuropsychological testing. Not knowing exactly what that entails, I presume it consists of CAT scans and the like. Judging from my experience with professionals, merely calling them can take up to a week to come through. Between calling, appointments, and tests, I can almost certainly estimate that this obsolete procedure will take several months.
This I conveyed to my doctor, who would consult with my psychiatrist, whom I will see next week. And thus the circle completes itself once more. My doctor also told me that Keppra has to be prescribed by a Neurologist. And there comes the gap: HPPD cannot be diagnosed by a Neurologist or a doctor, and Keppra can't (?) be prescribed by a psychiatrist or a doctor.

 

Have any of you been caught up in such a fruitless pursuit as well? If so, how did you get out of it?
Is it merely dependant on whether or not you'll find someone for whom helping others precedes the fear of losing their job?

I really don't see why acquiring a simple medicine has to be so tiring and demoralizing. Perhaps I'm missing something.

 

I've contemplated ordering online, but taken into account the various risks involved, that seems like a bad idea.

Ironically, I no longer have the cognitive skill to do a crash course in chemistry to synthesize the stuff myself.

I'd be grateful for any suggestions which could facilitate this tedious progress. Feel free to PM me if necessary.
I hope to be able to share my experience with Keppra here in the near future.
Many thanks in advance!

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I can certainly empathise; it took a long time before I could get a prescription for Keppra - neither my doctor nor the neurologist I saw would prescribe it despite the studies I presented them with. It is demoralizing, especially considering that its such a well tolerated drug. Some people seem to get lucky and have doctors that when shown the evidence are willing to let them try it -it certainly seems to be the case that doctors and neurologists can prescribe it if they choose. Where that is not the case you may have to seek out a neurologist or a psychiatrist that has experience of HPPD, or at least similar brain-based visual disorders. I was lucky that a member of this site was able to help with a suggestion in this regard. I don't know if there are any members from the Netherlands that could do likewise for you. If not, do some research and email as many people as possible. Ask if they have experience of treating the disorder and what medications they prescribe if so. Bear in mind you may have to pay to see someone privately; this can be expensive but in my opinion is worth it. If only so you can stop banging your head against a wall and have someone take you more seriously- this in itself can make you feel a lot better.

 

Also, try not to get too fixated on Keppra. It has helped a number of people to a great extent and is definitely worth trying, but there are also many people on whom it has had little or no effect. The patient testimonies that have been posted on this site can be misleading in this regard as they don't give the full picture. Just don't get your hopes up too high and remember there are other things that could potentially help too.

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I recommend studying up on occipital lobe seizures and their symptoms and claiming you are have some issues to a neurologist. A white lie but if you feel like you need treatment this is one way. I was fortunate that my eeg showed abnormalities and was prescribed keppra.

Also when I moved I literally walked into my current neurologists office, explained that back home I was diagnosed with occiptal lobe epilepsy, explained a few symptoms and told her my current doseage and she wrote me a new prescription. Didn't transfer my medical files or anything.

Hope that helps. Keppra has helped me. Not so much visually but with mental aspects and occiptal lobe seizure stuff

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Oh, and yes, certainly request an EEG if you haven't had one already. If abnormalities do show up it will certainly help you get your prescription, as ludwig indicates.

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Thanks for the replies, quite helpful ideas there.
 

Chris, as far as I know, there aren't any doctors in the Netherlands that are experienced with HPPD. I'll check some Dutch psychonaut forums however.
Money is not an issue, I was even offered a ticket to Boston to see if I could meet Dr. Abraham. But I rather keep that as a last resort, and try less radical means first. I'm well aware there's a chance that Keppra might not work at all, I just rather not think of that. I mean, aside from Keppra, what else is there really?
Lamictal, Sinemet, and Klonopin? Perhaps Flunarizine? I rather stay clear of Klonopin, with all the cognitive side effects. Lamictal doesn't sound to welcoming either. I have also read a great number of reports of people for who Keppra didn't work, or the side-effects were too severe. But the study does indicate 85% of people benefit from it, which are good odds.
 

Ludwig, unfortunately all medical files in this country are interlinked on some massive filing system. I could go to a dermatologist, and they could see I had the sniffles when I was 3 for example.

 

I suppose my best bet is to wait until the neurological testing, and ask for an EEG. Damn that looks creepy though. Also, there is a slight chance they actually know what HPPD is. Guess I'll just have to wait and see, and go from there. Perhaps they're already planning to do an EEG, who knows.

Would you guys mind sharing your experience with Keppra?

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As far as Keppra goes I am still taking it and have been for a while now. At first I thought noticed some minor improvements but I think this was just a placebo effect. My visuals actually got worse when I increased to 1500mg for the first time, but that subsided. I've had some mild side-effects, usually when I increased the dose - itchiness, headaches, possible slight rage. Overall it has not helped me at all thus far. I will probably remain on it for another month and then discontinue if there have still been no improvements.

 

Oh, and I wouldn't worry about the EEG - its not an invasive procedure. I find them somewhat fun.

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Thanks for sharing, sorry to hear it doesn't do the job for you.
I can see why you advized not to be too hopeful, I too would be disappointed if it doesn't work after a month.
However, some people don't notice any benefits up till a year of use.

And yeah I guess it sure beats sliding through a giant machine.

I almost forgot to press "post", I got sidetracked EEG helicopter control and the like.

Back on-topic: seeing as Keppra has anxiety listed as a potential side-effect, I wondered what I could add for anxiolysis.
There aren't many anxiolytics which don't interact with anti-convulsants. A few ponders later, I remembered a novel Russian anxiolytic I was once interested in: Tenoten, which has proved not to interact with anti-convulsants in a study, and it's actually used for epileptic patients with anxiety. I have ordered some, and will start a topic soon with information, experience, etc. One person I correspond with on another forum has used it, and it seems to work very well for DP/DR and anxiety. Albeit not having HPPD, this guy also has his share of polydrug use, which he says contributed/caused his cognitive issues. So seeing as that is all similar ground, I'm going to give it a shot.

Chris, any ideas on what you're gonna try next?

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One good thing about the diagnosis toxic encephalopathy is that docs will prescribe just about anything.  Brain injuries have a broad range of meds that can be used including dopamine and acetylcholine type meds.  With meds being established for treatment, docs are less afraid to prescribe.

 

Whereas, members try hard to get a HPPD diagnosis, then if you do success, there isn't an official treatment protocol for it.  So you still struggle to get meds.  Even some who went to Dr A and got a letter of meds to try still have difficulties.

 

Ludwig was smart to do what he did ...

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It took me years to get Keppra. Keep persisting to get it and you will, eventually. Getting the HPPD diagnosed helps as well.
The problem with the psychiatrists and neurologists bouncing the issue back and forth is something I know to well. So I demanded my psychiatrist to send a request to a neurologist with the simple questions "Do you know anything about HPPD? Can I perscribe my HPPD-diagnosed patient Keppra?". He repiled that he didn't know anything about HPPD, but he also said that Keppra is so well tolerated among his patients, so it wouldn't really be any problem to try out Keppra. And then my psychiatrist perscribed it to me, and I can assure you that Keppra was worth all my years of effort!

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Visual: toxic encephalopathy sure sounds more convincing than HPPD. Is this diagnosed by a neurologist through the EEG testing?
My main worry is that if my EEG shows no abnormalities, it would only make it even harder to convince the doctors.

415_STYLEE: Years? Wow.. sounds depressing to be honest. Yep, persistance is key here I suppose.
I'm not sure, but I think the institute I am seeing next also has a neurologist on staff, so perhaps that will make things easier.
Once again, I'll know more in a few days.. I'll report back by then.
I just read up on your post, that's great! Happy it works so well for you! When did you start noticing the positive changes?
In a matter of days, or weeks? Hope they keep accumulating for you :)

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Thanks for sharing, sorry to hear it doesn't do the job for you.

I can see why you advized not to be too hopeful, I too would be disappointed if it doesn't work after a month.

However, some people don't notice any benefits up till a year of use.

And yeah I guess it sure beats sliding through a giant machine.

I almost forgot to press "post", I got sidetracked EEG helicopter control and the like.

Back on-topic: seeing as Keppra has anxiety listed as a potential side-effect, I wondered what I could add for anxiolysis.

There aren't many anxiolytics which don't interact with anti-convulsants. A few ponders later, I remembered a novel Russian anxiolytic I was once interested in: Tenoten, which has proved not to interact with anti-convulsants in a study, and it's actually used for epileptic patients with anxiety. I have ordered some, and will start a topic soon with information, experience, etc. One person I correspond with on another forum has used it, and it seems to work very well for DP/DR and anxiety. Albeit not having HPPD, this guy also has his share of polydrug use, which he says contributed/caused his cognitive issues. So seeing as that is all similar ground, I'm going to give it a shot.

Chris, any ideas on what you're gonna try next?

 

Just to clarify, I've been on Keppra for longer than a month. Several now, I believe. And the vast majority that did benefit from it had done so after this amount of time.

 

As to what I'll try next, I'll have to discuss this with my doctor at my next appointment but it looks like either Acetazolamide or Sinemet.

 

I don't much about EEGs but I imagine the more ' thorough' the better.

This chap has a lot more electrodes on his scalp than I did.

EEG_cap.jpg

 

If something like visual snow is centred on fewer than 100 neurons I would have thought the more the better. But as I say, I'm no expert and am just speculating.

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Visual: toxic encephalopathy sure sounds more convincing than HPPD. Is this diagnosed by a neurologist through the EEG testing?

My main worry is that if my EEG shows no abnormalities, it would only make it even harder to convince the doctors. 

 

Like many neurological disorders, it doesn't show on an EEG unless it is severe.  Even stuff like Parkinson's disease will show 'normal'.

 

For me it was a straight forward 'clinical' diagnosis.  Years later, neurocognitive tests shows stuff that is typical for the problem.

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Chris: I see, I understand why you're moving on to other agents. I'd imagine Sinemet is easier to get prescribed, as L-dopa itself is OTC.
Acetazolamide sounds interesting, as it's also used for epilepsy.. Also sounds like a long shot though, but then again I think keeping an open mind with experimentation is key to finding something that helps you, so good going there. As for the EEG: good thing I shaved my head last month.

Visual: I read a qEEG is more precise, and that the "mini-seizures" going on would be easier to find. Any comments on that?

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Chris: I see, I understand why you're moving on to other agents. I'd imagine Sinemet is easier to get prescribed, as L-dopa itself is OTC.

Acetazolamide sounds interesting, as it's also used for epilepsy.. Also sounds like a long shot though, but then again I think keeping an open mind with experimentation is key to finding something that helps you, so good going there. As for the EEG: good thing I shaved my head last month.

Visual: I read a qEEG is more precise, and that the "mini-seizures" going on would be easier to find. Any comments on that?

 

L-dopa is not OTC, it requires prescription.  Many products say L-dopa when they are plant extracts with that or more likely various compounds that affect dopamine and/or testosterone system (Muira Puama, Catuaba, Broadbean leaves, Chinese Skullcap [MAO], etc...).  http://69.164.208.4/files/Pharmacological%20Survey%20of%20Medicinal%20Plants%20for%20Activity%20at%20Dopamine%20Receptor%20Subtypes.pdf

 

Of course, it may be different in the Netherlands - but if you can get levodopa, then you should be able get carbidopa/levodopa (Sinemet).  Please confirm that you can get real L-dopa.  You don't really want to take much levodopa by itself - nasty side effects ... one is puking (the name Sinemet literally means "without vomiting")

 

 

Don't know much about qEEG.  Just that they do further analysis than just an EEG.  Dr A commented that with HPPD, cerebral disinhibition shows with qEEG.

 

Further clarification.  The Japenese are studying EEGs for Parkinson's disease.  They can see the loss of smell in a specific EEG they perform.

 

Also, an ECG will show a slight change in heart beat with PD.  [sorry, but have forgotton what it was called]  It shows years before any motor symptoms show.  And they are working to standarize this info to be used as early detection of PD.  As a rule, the sooner you treat (which is "management") PD, the slower it will progress.

 

So it really comes down to what is standard medical practice verses what researchers are doing - easily a 20 year gap.

 

 

On final peice for the puzzle.  The heart beat change reflects abnomal autonomic nervous system function (sympathetic/parasympathetic).  Unequal pupil size is another manifestation of autonomic problems - this symptom affects some on this forum.  So, for some, HPPD also exhibits autonomic nervious system alterations.  Therefore, these may also manifest in the body such as digestion changes.

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Chris: I see, I understand why you're moving on to other agents. I'd imagine Sinemet is easier to get prescribed, as L-dopa itself is OTC.

Acetazolamide sounds interesting, as it's also used for epilepsy.. Also sounds like a long shot though, but then again I think keeping an open mind with experimentation is key to finding something that helps you, so good going there. As for the EEG: good thing I shaved my head last month.

Visual: I read a qEEG is more precise, and that the "mini-seizures" going on would be easier to find. Any comments on that?

 

I think Sinemet is actually harder to get prescribed due to the potential side-effects.

 

As far as I know Acetazolamide is rarely used for the treatment of epilepsy these days and I'm also unsure as to whether it will be any help. But as you indicate, it's worth a try.

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Visual: You gotta love internet though. Here's a US based company that sells L-DOPA. I don't know about legality and all that nonsense though. That page however, does have an interesting idea:
 

What works best with it?

EGCG (from Green Tea extract) acts as a natural decarboxylase inhibitor which helps prevent excessive levels of Dopamine from building up in the body rather than the brain.

 

 Quercetin acts as a natural catechol-O-methyl transferase (COMT) inhibitor that improves L-DOPA's conversion into Dopamine in the brain and helps prevent Dopamine breakdown.

 

L-DOPA+COMT inhibitor ring a bell, anyone? I don't know, haven't researched Quercetin either. But perhaps others would be interested in further investigation. Perhaps if one were to take this combo of L-DOPA, Quercetin, and EGCG, similar effects could be reached?
EDIT: Further discussion on this topic can take place here, as I thought it could be a good idea to post seperately.

Anyway I'll make a request voor a qEEG instead, would you care to link to the study/paper/document from which you quoted Dr. A's statement?

Chris: I hope you get through with Acetazolamide. I was thinking perhaps it would be a good idea for this forum, to post a sticky in this subforum, containing information about all known possible medications, and their effects etc. There are some people who have used unconventional medications with succes, and it would be a nice referance for those running out of options, to be able to comprehensively overview other medicines, be there effectiveness merely anecdotal or not. On Sinemet: hmm psychosis doesn't sound all too fun, I can understand why they are hesitant to prescribe Sinemet. Twitches and anxiety, also not a pleasant ride. Screwing around with dopamine certainly holds risks. However, low-dose would seem to be quite harmless in that aspect, as I believe Dopamine levels have to elevate to an abnormally high level in order to produce psychotic symptoms.. I might be wrong there though.


On my situation: I was supposed to have an appointment with my psychiatrist today, but it got cancelled. The guy was sick (again), and they postponed my appointment to the same date as my appointment with the addiction clinic. So now I have to sort all that out. In the meantime I await my order of Tenoten, hoping it will arrive soon, as I've yet to receive the tracking details.
The past two weeks I haven't used any Phenibut, nor Kava, and by the time my appointment comes around, it will be 3 weeks. Hopefully this will be enough of an argument to portray it's unrelatedness. The last conversation I had they kept hammering on about my past drug use, and my current use of Kava and Phenibut. Seems they lack a lesson of cause and effect. With that out of the way, perhaps they'll focus on the actual issue at hand. We'll see.

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415_STYLEE: Years? Wow.. sounds depressing to be honest. Yep, persistance is key here I suppose.

I'm not sure, but I think the institute I am seeing next also has a neurologist on staff, so perhaps that will make things easier.

Once again, I'll know more in a few days.. I'll report back by then.

I just read up on your post, that's great! Happy it works so well for you! When did you start noticing the positive changes?

In a matter of days, or weeks? Hope they keep accumulating for you :)

 

I was quite surprised that felt the first pill I took within 1½ hours. The effects of a Keppra pill lasts for ~12 hours. It was quite harsh in the beginning, Keppra really "forced" itself on my brain. I napped quite often, since I hardly could stay awake. Then "Keppra rage" came as well..

Hmm I would probably say the first positive effects came within days, but the best effects without nasty side effects came on about 1½ month after starting Keppra. I.e there is an adjustment period like with most meds.

 

Thanks for the well wishes. So far the effects have been unwavering and gradually accumulating. Think I'll try 1500 mg/day soon.. :)

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Got both appointments in a couple of hours. I'm gonna catch some sleep and reply once home again.

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Hmm that sounds acceptable. Feel worse, then feel better. Better than feel bad, feel worse, nothing happening :D

So a quick update of the quest so far:
Yesterday I went to both the psychiatrist and the addiction clinic. I was disappointed, but it went better than I expected.
Psychiatrist rubbed his chin alot and said a lot of cryptic quasi-insightful mumbles. However the people at the addiction clinic seemed genuinely interested in helping me. They agreed that, yes indeed, I don't have an addiction (aside from tobacco). Alas there was no neuroanalysist, I had been misinformed about that.
After 2 hours of tedious questioning, and another appointment today, they informed me it would take 2,5 weeks to have my case reviewed.
Sigh, sigh, and sigh. But it was a very friendly girl about my age, and she promised she would do the best she can to help me. That's a lot more than I've gotten out of any other 'professional'.

Tomorrow I have another appointment with the psychiatrist. Or well, my first appointment with a psychiatrist. Previous people were apparantly psychiatric nurses, whatever that means. I left her some files on HPPD to review before our appointment, and hopefully she will be easier to convey my issues to. After re-explaining, and pointing out in the study, that Keppra is safe and efficient for treating HPPD, I got a big "Ohhh... *silence* .... she'll cover that with you tomorrow, perhaps it's a possibility".

So who knows, I might walk out of there with a prescription. The lady also seemed more human from our brief introduction, so I have good faith to get somewhere.

Furthermore, I decided to take matters into my own hands. My (ongoing) research pointed out that tDCS (transcranial direct current stimulation), theoretically could be very beneficial for HPPD. This is why I contacted a private institution (had I known those existed in Holland earlier..... Oh well).
Hopefully the addiction clinic will request a qEEG and my insurance will cover it. Otherwise it's a whopping 600 euro's.
I went to the library and got some books on Neurology. They don't seem very elaborate however, so I might buy some books online (basic neurobiology and neuropathology etc.)
And lastly, tomorrow I am going to buy components to build a tDCS device. I don't know the first thing about electricity, but I figure if I follow the instructions exactly, nothing can really go wrong. Should be safe.

So I've spread out my chances, and actively engage in getting shit done, to put it bluntly. And now there's someone singing next to me, cats having sex sound even better. Hence line of thought is lost. I'll update if anything significant happens.

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I'm liking your posts - you have a very engaging writing style!

 

One book you might want to look into is Neuroscience: Exploring the Brain (Third Edition). I have recently started reading it and it is fantastic for getting a general understanding of the nervous system (it is used by students for neuroscience degrees).

 

I don't know about tDCS (building your own sounds very radical - be careful!) but I do know a little about neurofeedback, which is something you might want to look into. If clinics can locate the HPPD on a qEEG (as has been shown) then they can try to normalise it through neurofeedback techniques. I know at least one member on here has tried it. He told me "Neurofeedback really helped me with anxiety and dp/dr. I find when these are reduced my visual symptoms reduce or become less bothersome." Our conversation took place some time ago and was very limited, and I do not know whether they attempted to find his HPPD and normalise it or whether he just had a general neurofeedback treatment.

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Best of luck with your tDCS device! Maybe I could borrow it if it works well *lol*.

Thankyou! It's quite simple to build actually, and it costs less than 20 dollar if you already own a multimeter. But if I get it working properly, my door will be open for anyone here who wishes to try it out.

 

I'm liking your posts - you have a very engaging writing style!

 

One book you might want to look into is Neuroscience: Exploring the Brain (Third Edition). I have recently started reading it and it is fantastic for getting a general understanding of the nervous system (it is used by students for neuroscience degrees).

 

I don't know about tDCS (building your own sounds very radical - be careful!) but I do know a little about neurofeedback, which is something you might want to look into. If clinics can locate the HPPD on a qEEG (as has been shown) then they can try to normalise it through neurofeedback techniques. I know at least one member on here has tried it. He told me "Neurofeedback really helped me with anxiety and dp/dr. I find when these are reduced my visual symptoms reduce or become less bothersome." Our conversation took place some time ago and was very limited, and I do not know whether they attempted to find his HPPD and normalise it or whether he just had a general neurofeedback treatment.

Thankyou!

Is written in a style that anyone can learn it? From basics to details, like a study book for first years of anything usually is?

I consider buying a very good pocket book on the Anatomy of the nervous system, but it only covers anatomy I believe. Furthermore it is in Dutch, and learning in English would be more universal, as opposed to constant translating.

I agree on it being radical. Every professional I have seen so far, is scared of what I'm doing. I just think: well if I don't take any risks, I'm not going to get anywhere. Can't let fear rule your life right? So thus the radical approach(es).

I intend on combining it with neurofeedback! Some of the NeuroSky EEG's seem to be of good quality, I will invest in that later in my journey. However, neurofeedback works best if you have some basic stability of mind/focus. Which is why I will do tDCS first.

But I suppose the benefits would be unsurpassed by many techniques, if I were to do a 20 minute tDCS session, followed by 20 minutes of meditation, finishing with 20 minutes of neurofeedback. And that each day, and neurofeedback+meditation perhaps twice a day.

So far, so good:

DSCF1505.jpg

 

Only problem is; I get an output of 5.8 mA, which is too high. Apparantly I bought a normal diode, and not a CRD, so this would be what is causing it. Tomorrow the shops are closed, so Friday is the soonest I can adjust this. The person at the electronics shop seemed very intrigued, so I suspect he is willing to help me out. He also told me something about how Transdermal Stimulation was used a long time ago to reach the same effects of Penicillin? And that people are getting immume to Penicillin, so they are re-implementing this technique. Or something along the lines. Last note on the tDCS is that I have yet to buy electrodes. I need to figure out which size first. Ordering them online is my only option, and Amazon states 3 weeks shipping. (remember: I'm in Holland) So my search continues.

And then there's the appointment I had today. Well, it was more an argument than a real conversation. It was me trying to explain my radical undertakings were based on careful consideration and rational thought, and her trying to convince me what I was doing (I tried different meds in the past) was risky. It all came down to: "It's my responsibility so shut up" vs "you should be weary of these things because your not a professional." Anyways, I didn't get any Keppra. "The study is only experimental, and I won't prescribe anything that I don't know of. Furthermore I think we should rule out all other possibilities before diagnosing you with HPPD"

So I replied with "Well then, guess I'll be feeling better when I'm 25 thank you very much!"

I really wanted to yell at her, even though I'm not a violent person. Besides, she was a very nice person. So my chance of getting Keppra is now dependant on the appointment I have in 2,5 weeks. And then they'll probably do some more unnecessary testing. Also she told me it is highly unlikely I'll get an EEG. So now I have to cough up 600 euros to get the care I need. I really want to break something.

* deep breath *

Luckily my grandmother is rich and in the country for the time being, so I'll have to discuss with here.

I really hope the Tenoten arrives soon and that it will provide me with some clarity, so I can hold out untill the next appointment.

They told me not to take any medicines, but I was aloud to take homeopathic stuff. What they actually meant was don't anything anything that alters your brain chemistry, but they didn't say that. Tenoten is "homeopathic" according to the box :D

My plan to post a succinct update failed. Oh well. I consider having a friend synthesize Keppra for me in the time being, but that is more radical than just faking a script.

Cheers everybody, be well!

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Hey man, I really like your ambition. Being proactive is a good thing but be careful!

The next doctor you go see you should really consider not mentioning hppd. Instead, as mentioned before, just study up on occiptal lobe epilepsy and explain you are having auras and random simple seizures like symptoms. They'll probably give you an EEG to test it but understand that the vast majority of people with epilepsy will often not have anything ever show up on their EEG's. The electricity issues needs to be happening during the test or nothing will show. So, they typically go based on your symptoms and I believe Keppra is often prescribed more with Occiptal rather than the other so id stick with that.

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Hey man, I really like your ambition. Being proactive is a good thing but be careful!

The next doctor you go see you should really consider not mentioning hppd. Instead, as mentioned before, just study up on occiptal lobe epilepsy and explain you are having auras and random simple seizures like symptoms. They'll probably give you an EEG to test it but understand that the vast majority of people with epilepsy will often not have anything ever show up on their EEG's. The electricity issues needs to be happening during the test or nothing will show. So, they typically go based on your symptoms and I believe Keppra is often prescribed more with Occiptal rather than the other so id stick with that.

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Hey ludwig,


thanks for the advice! I think it's too late to take back my HPPD claim. Any doctor I'll see from now will be able to read my file.
And the private clinic I'll be seeing, well... is a private clinic. I could have an qEEG for fun if I wanted to there, as long as I pay.
So alas..


I've ordered two of the correct CRD's from the UK, so that should be here shortly. Sponge electrodes I can apparantly make myself with some copper plating, so I'm consulting some people on how to go about doing that. I also found that my brother has full access to PDF versions of a lot of useful books, such as "Vision: from Neurons to Cognition", which would otherwise cost me 100's of dollars to get the books I want. I'm currently printing out 300+ pages of information relevant to HPPD and perception.

Lastly I've found someone who is able to... how to put this.. procure levetiracetam for me.
So that's wonderful news with some drawbacks. I'll just keep the Keppra handy for when all else fails, as there's no endless supply where this came from.
Rather go the more legal route obviously. Besides,  I don't have it yet. Plus I 'promised' the doctors I would abstain from medical experiments.

Tenoten seems to be a slow delivery, but it has finally departed from Ukraïne, so it should be here shortly.

So once more I'm slowly, very slowly, crawling towards a better headspace. Will update if anything significant happens.

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