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Desperate to get on Keppra for HPPD in Australia - any suggestions?


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Hi there. 

 

Given that I just spent almost an hour writing out this post only to lose it to shitty internet, I'll try to keep this short.

 

I'm 19 and I've been experiencing pretty severe HPPD (Hallucinogen Persisting Perceptual Disorder) symptoms for over a year now since some reckless psychedelic experimentaiton throughout 2012. I experience perpetual visual disturbances - after-images, visual snow, trails, floaters, etc. but I'm mostly at peace with them. The real killer is the cognitive side of things - fucked up memory, iffy concentration, generally feeling much less intelligent and capable, and most cripplingly, dissociation. Depersonalisation Disorder seems to fit me to a tee - feeling detached and distant from the physical world, my relationships, my thoughts and feelings and sensations - feeling like I'm trapped inside my head like a fishbowl, looking out.

 

It's constant and it's awful and it's fucked my life up. I used to be a top student at a selective school who was generally happy. On the insistence of a friend who had me foolishly convinced he was some expert on recreational drug use destined to be a psychopharmacologist, I used a variety of psychedelic drugs, and here I am. I had to drop out of school in my final year, feel depressed constantly, have great difficulty enjoying myself and my hobbies, am plagued by endless existential anxieties, have had incredible difficulty seeking work, my relationships with friends and family are strained and many gone completely, I have family members in difficult situations I feel powerless to help, I feel hopeless and worthless and incredibly regretful. I'm a shadow of my former self. Life sucks, but I'm slowly adjusting and getting by.

 

HPPD is of course a relatively rare disorder, poorly understood and without a clearcut approach to treatment. It theorised to be connected to abnormal neuronal activity in the brain similar to seizures, but it's ambiguous and there are undoubtedly a whole variety of causative factors. Anyhow, it's pretty unanimously established by one study, a plethora of anecdotal evidence, and many of the (very few) specialists familiar with the disorder that Keppra is the most frequently effective and most sustainable pharmacological treatment, with many people responding well over varying time periods and some to the point of complete remission. 

 

In March this year when the self-loathing and desire to stop living subsided enough for me to scrape together the courage and motivation to seek help, I saw a GP and plead Keppra's case with a bunch of supporting documentation. She was more than willing to prescribe me Keppra - unfortunately in Australia a lot of drugs are restricted to GPs and Keppra's one of them. Of course, she was able to write me a script for Cymbalta (because that's so much safer) so I took that for a few months and had the anxiety replaced by complete anhedonia and experienced an exacerbation of several of my symptoms. She also referred me to a psychiatrist who seemed skeptical about HPPD's existence, flat out refused to discuss Keppra, and offered me different antipsychotics. I refused them because I was aware of them almost never helping HPPD sufferers and had had enough of that with Cymbalta. He referred me to a research professor of psychiatry (by this time it's around August) who did acknowledge that all my symptoms were very likely the result of using hallucinogens (though refused to credit 'HPPD' as an umbrella term for whatever reason) and ran a whole variety of tests (psychometric assessment, MRI, EEG, sleep analysis,) which unsurprisingly showed little out of the ordinary as is very typical in HPPD (though I know that the psychometric results were nowhere near what I'd 'normally' be capable of). After all that I wound up with scripts for Lamictal and Valdoxan. I'm seeing a psychologist which is useful in some ways, but at the end of the day the worst of my symptoms are things you can't really talk and think away.

 

It's been a few months and I've seen little to no improvement on Lamictal and Valdoxan. In fact I think I'm experiencing some of the Lamictal "stupids" and worsened depression but it's hard to tell as any of that sort of thing is like a drop in the ocean at this point I saw the professor last week and informed him of that, once again pressed for Keppra with all of the supporting documentation, was once again dismissed, and had my Lamictal dosage increased by 50mg. My next appointment is in February - over two more excruciating fucking months away. I'm at my wit's end. I can't stand that I'm going into Christmas with no joy, no hope, and in the same condition I was in last year.

 

I know there's a good chance Keppra will do fuck all for me, as has been the case for plenty of other others. But there's also a good chance that it'll improve my situation even just a little, as has been the case for plenty of other others, so there's hope there that I can't let go of. And I won't know until I try it. I think it's only logical that I wonder often whether or not it'll help me considering it's the most commonly useful thing for those in situations as close to mine as possible - even for those who've tried Lamictal for months to no avail. And if it doesn't work, at least then I'll know that the "big one" can't help me, and quit enduring this frustrating uncertainty and suspense.

 

So I guess I'm looking for help and suggestions as to what to do next. If there's a smarter way I might approach all this. I considered online pharmacies, but it just seems so risky and confusing that I've pretty much written that idea off. Perhaps there are better specialists I might see (I feel like this lies far more in the realm of psychiatry than neurology but maybe that's something I should consider). Perhaps someone on here knows of an open-minded, compassionate, lenient specialist in the Sydney area. I don't know. I'm just kind of at a loss, I guess.

 

Thanks so much for reading.

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Online pharmacies are a bad idea. There's no guarantee of quality.

 

You might try a neuropsychiatrist or a neurologist. HPPD sounds more "organic brain" and less "mind" oriented if that distinction makes sense.

 

Brains are pretty squishy and tend to be able to handle a lot of what we throw at them. However, sometimes they need time and support to recover from what we've done to them. What are the non-pharmacology interventions that you are doing to support your wellbeing? I'm thinking about eating a wide variety of healthy foods (including colorful fruits and veggies), exercise (has been shown to be as effective as antidepressants for mild to moderate depression), social support and connection, having things that bring meaning to your life, grieving your prior status so you can accept where you are now and move forward from this place, etc.

 

You might also try approaching the pdoc and/or research person from a perspective less of requesting a specific drug and more to being open to trying what they suggest. Some docs have egos that prevent them from hearing patient-induced treatment strategies.

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I second going to a neurologist. Keppra is rarely used as a psych med because it can come with some heavy psych side effects (depression), but neurologists don't shy away from it when needed. Just make sure that your pdoc knows about the neurologist and what meds you are taking.

 

I also second being open to suggestions from your treatment team rather than being focused on one particular med. Being too focused on one med could lead to you being considered a difficult patient. And sometimes you have to build trust with your doctor.

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Thanks for the responses guys.

 

As far as non-pharmacological interventions, admittedly at the moment it's not much. It's so hard to fight through the "holy shit i feel fucked up and worthless" feeling to engage with things, to not think "this used to feel so easy and normal, and everyone i know still does this stuff without a hitch", to spend time with people and push all those thoughts aside in an effort to act normal and steady, to not still fret about whether i'm coming off as weird. And I need to get over all that, I know, because I know that recovery isn't down to just the right combination of pills. I just can't help but worry that even if I put all my energy into doing all that stuff I might come out the other end feeling the same and even more exhausted and hopeless. I know that's self-defeating. I'm just prone to over-analysing, I suppose, and ambiguity really fucks with me. When everything feels so hard, it just seems so unfair that such a colossal effort can't be guaranteed to help significantly. But, I have to do it. So I will.

 

As far as the pharmacological stuff goes - I worry about seeing a neurologist because I've gotten an MRI and an EEG and they've both come back as relatively normal (apparently there was a slight irregularity in my EEG but it was within a certain range of common deviation and thus not especially noteworthy). Is this a justified concern? That they might just say "there's no significant detectable issue so this isn't our business" and redirect me to a psych? 

 

It's kind of hard to just accept and go with the recommended route of treatment when I've never gotten a solid reason for the immediate condemnation of Keppra outside of "i'm not familiar with that drug and i'm not familiar with that condition and i'm not going to prescribe a drug i'm not familiar with for a condition i'm not familiar with". When it's pretty clear that the most appropriate diagnosis for my condition is HPPD, which is recognised in both the ICD and DSM, I feel like it's pretty obvious that that's what I should be treated for. When these specialists readily acknowledge that they're completely unfamiliar with the condition and its exact function and causes, it just seems reckless that they'll outright refuse to give thorough and serious consideration to existing literature that discusses it and instead start prescribing for conditions they think are similar.

 

I would be happy to go along with a treatment plan if it were the result of objective, open-minded, thorough consideration of the situation, but so far that just hasn't seemed to be the case. It's either "sounds like psychosis" or "sounds like severe anxiety" when it just seems so bloody obvious that the situation is far more complex than that. Keppra just seems like the most bloody logical resort when all the factors are considered, especially when it's pretty much a "well we don't really know, let's just try things that seem appropriate until something works" situation. And Keppra isn't addictive, can't be abused, has pretty comparably "heavy psych side effects" to the things I've tried already and the things I've been offered, and won't do any long-term damage in the event it doesn't work. The only reason I'm so intent and focused on it is that there just doesn't currently seem to be anything else worth being intent and focused on.

 

A patient requesting a specific medication that a psych is familiar with for a specific condition that the psych is familiar with i.e. "I'm really anxious and I'd like to try Valium/Prozac/etc." is a very different situation to a patient saying to a psych unfamiliar with their condition "I know my condition is rare and ambiguous, and naturally I've been compelled to research and understand it, here's some thorough information about it I've compiled for convenience and this is my own experience with it and why I believe it's the most appropriate diagnosis. Through my research it's become very apparent that there one particular drug that is recognised as most often effective for people experiencing the exact same symptoms as me and obviously I'd be very interested to try it, here's all the relevant literature on its use in situations like mine". At the very least I'd hope to prompt some well thought out and open-minded criticism rather than the "HPPD? Never heard of it, sorry, it's off the table. I'll treat it as I'd treat conditions I'm familiar that share some of your symptoms" approach I've experienced thus far. The idea of "building trust" by taking a strong medication for weeks/months with a view to saying "look, it didn't work, can I try this now please?" just seems ridiculous. I really can't stand the bureaucracy and condescending superiority endemic to the world of mental health treatment.

 

Whew, what a rant. I'm probably more jaded than is realistic about all this. I'll start trying to find a neurologist who fits the bill tomorrow I suppose.

 

Thanks again guys.

Edited by smoke signals
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Have you tried bringing in some papers about your alleged illness? Just asking if they heard of it, and considering "no" as the end of each effort hasn't helped you so far. You may think it is bloody obvious, but frankly, it doesn't seem that way to me. Fortunately, I am not your pdoc. But going in and insisting you have an illness, then resisting treatment, is not making you any friends in the medical community

 

If they aren't familiar with it, you need to make them familiar with it. A lot of the symptoms you are listing are found in a variety of illnesses. It isn't surprising that they don't jump to the same conclusion that you do. I would bring some articles, and the DSM, and the other one's (ICD?) descriptions to a neurologist and a pdoc, and ask them why they don't think you fit those symptoms. But remember, it *is* possible that you don't have it.

 

I have all the same symptoms. I have migraine, and bipolar I. The migraine accounts for the visuals, the bipolar covers everything else. I get psychotic at times, too.

 

I don't understand why you turned down anti-psychotics if you are having psychotic symptoms. Psychiatry treats symptoms, not root causes. Even if Keppra is the magic bullet, people don't agree with you currently. Why suffer psychotic symptoms in the meantime?

 

This also is not the sort of thing that should be treated by a gdoc. How many cases of HPPD has your gdoc actually treated? Or is she just taking your word for it?

 

Having an unremarkable EEG and MRI doesn't really mean much. Until my husband's seizures started going bezerk, he had a lot of clean eegs. He only began to have constant micro-seizures after many years, and within a year, they tried to fix the seizures surgically. But the point is, they didn't start showing up on EEGs until he was 40, he had an unremarkable MRI, yet no one doubted he had seizures because he kept having tonic-clonic seizures everywhere he went.

 

He did use Keppra for seizures, and it made him extremely depressed and irritable. It was the worst part of our marriage. Now he is a subject in a research study with a metabolite of Keppra that has still not been approved by the FDA, upon which he is doing great.

 

Good luck, but going in insisting you have a particular illness is not going to make your diagnosis go any faster. You have to be willing to build up a relationship of trust with your pdoc and ndoc, and after they know you, they may very well agree with your self-diagnosis. But I promise you, if a patient walks in and says "I have "blahblahblah" because I read about it in a book," the dr is going to be skeptical.

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Hey, thanks for the response.

 

It was probably lost in there but yes, I've brought in extensive documentation about HPPD: excerpts from various online sources as well as the ICD and DSM diagnostics on it. As far as being obvious: I took hallucinogens, experienced a variety of perceptual distortions, those same perceptual distortions have persisted long beyond the initial intoxication. As far as I'm aware there literally no diagnosis that's more appropriate. Whether some of my other symptoms exist independently from whatever's involved in causing that, I guess it's impossible to know for sure. Certainly a lot of them are very often reported to coexist with with the more superficial perceptual issues.

 

I'm not experiencing any of the more obvious positive psychotic symptoms, nor did I say so at any point? Certainly some negative symptoms that overlap with depression but that's neither here nor there. My apprehension regarding antipsychotics, aside from feeling that I don't seem to be experiencing anything that they're the most appropriate treatment for, comes from all-but unanimous recommendations against them from others suffering from similar conditions to me. My current pdoc, far and away the most qualified specialist I've seen thus far, is confident it's not psychosis, hence his prescription of lamictal and valdoxan (the reason he's so set on lamictal is of course for the overlap of mood-stabilising/antidepressant qualities in addition to the "traditional" anticonvulsant activity). 

 

I'm aware a gdoc isn't the appropriate professional to treat this at all; I saw her back in March and took her prescription of Cymbalta because I was so lethargic and hopeless that I couldn't at all muster the necessary drive to find my way to a psychiatrist and negotiate all the necessary hoops involved with that; I took what I could get out of desperation. Of course, I'm not seeing her about this anymore.

 

So it'd be appropriate for me to consult a neurologist for this then? Should I look for one that specialises in a certain area? I can't seem to find anyone working as a consulting neuropsychiatrist in Sydney. 

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I think you should just go back to the doc who prescribed your Lamictal. They were listening to you, I think. See, Lamictal is an anti convulsant like Keppra, but with less psychiatric side-effect. Keppra is notorious for making people depressed or really angry. Maybe now that you've tried Lamictal, they will be willing to try Keppra, or something else. 

 

Sometimes the safer options need to be exhausted first. For any condition they try the first-line drugs, then the second-line etc. Keppra is there somewhere. And hey, if something else works before you get try to Keppra, great!

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