tlehmbecker

So, this is just a theory post.

I'm thinking that for those of us that got HPPD from using Benadryl or similar medications with potent anticholinergic effects that we me not actually have HPPD at all.

If you look up the long term effects of using anticholinergics, the symptoms are eerily similar to if not exactly those of HPPD.

As for treatments, I don't think there really is one for long term use of anticholinergic medications (I used diphenhydramine for ~2 years for sleep). It's just a little bit of reassurance that hopefully opens some people up to trying medications for their other illnesses, if there are any at all, without worrying about whether it will cause your symptoms to get worse.

Of course, this is in regards to people who got HPPD from Benadryl alone and weren't/are not poly drug users. For those that were/are poly drug users that had their symptoms appear or worsen after using Benadryl or similar drugs I believe this sheds some light on yet another possible mechanism for HPPD, namely the acetylcholine system since it plays a huge role in neuronal signaling in the brain. Messing with it would obviously have some serious consequences.

Anyways, just a little bit of a theory.

For those who got HPPD from using Benadryl or similar OTC antihistamines/sleep aids, was Benadryl your sole drug of choice or were you using a variety of drugs?

I'm asking because I wasn't a poly-drug user (I tried weed a few times and MDMA once), but my go to was diphenhydramine aka Benadryl (for sleep and as a muscle relaxant). Yet somehow I ended up with 'HPPD'. The other thing is I was using diphenhydramine on a nightly basis for almost 2 years.

Now here's the kicker, I looked up what the effects of long term use of diphenhydramine and anticholinergics were (I don't know why it never occurred to me to do so) and I found that the effects of long term use are eerily similar to the symptoms of HPPD. I mean they're practically identical. You can see for yourself (diphenhydramine: https://en.wikipedia.org/wiki/Diphenhydramine#Adverse_effects and anticholinergics: https://en.wikipedia.org/wiki/Anticholinergic#Side_effects ).

So, I'm thinking that if your only drug use was Benadryl or a similar drug, and you developed HPPD symptoms, I think it may not even be HPPD at all. I think it may just be a manifestation of the long term effects of using anticholinergic drugs like Benadryl. It doesn't provide any hope really other than the fact you might not have HPPD at all.

As for treatments, supposedly racetams, alpha-GPC, and choline work, but I don't have enough evidence to back this up. 

Despite this, it still doesn't explain my sudden onset of noticeable symptoms (I may have had symptoms before and was just ignorant of them). Just a theory is all.

Well, I wasn't taking it for pain (though it does help somewhat), Tussionex didn't seem to do anything (Tussionex is a hydrocodone/chlorphenamine syrup used to treat sever coughs, in my case I had bronchitis). However, I took quite a bit over the course of a day and a half and it really worsened my DP/DR, temporarily though. I don't think it was the hydrocodone, more likely the chlorphenamine since it's a potent antihistamine/anticholinergic.

So, I had a follow up with a neurologist this past week. Said my EEG was normal (though from what I understand, to get an accurate estimate they have to do multiple EEGs) and my MRI was normal for the most part aside for a slightly smaller left temporal lobe, but he said that shouldn't affect function. However, he wants to do an EEG monitor test which basically means I either go inpatient for 5 days the entire time hooked up to an EEG or I wear a portable EEG for a week. I think I'm gonna go with the portable EEG.

Personally, the trailing is nothing more than a minor annoyance and I'm able to ignore for the most part. Double vision/ghosting is the worst for me. It makes everything requiring visual focus 1000x harder to do and it makes being outside, at night especially, incredibly difficult and distressing.

I ended up going to the ER (urgent care turned me away). Doctor wasn't too fond of giving me a temp prescription, but since I had my actual prescription with me it added more legitimacy to my story (which was already legitimate to begin with). Where I live, there is a lot of drug use so a lot of addicts come into the ER asking for this and that just so they can get their fix, so the docs usually turn you away unless you're literally about to die from withdrawal (i.e alcohol withdrawal, benzo withdrawal).

Anyways, after that debacle I was able to get a hold of my doc and he put in another 6 month prescription for clonazepam.

I get that, but slower. Also, it only happens for me where there is sharp contrast, i.e. light to dark, dark to light, one color to another color separated by a line, etc.

I haven't gone into withdrawal yet, but I may be going into it very soon.

I was being absent minded and filled my last refill about a month ago shortly before meeting with my psychiatrist. During the appointment I forgot to ask for a refill since I wasn't planning on doing a taper until May at the earliest. Well, I completely forgot about it until today. I went to go refill it only to find out I had 0 refills left, which was just great (should have checked awhile ago and put in for a refill request with my psychiatrist then). Anyways, I have a day's worth of clonazepam left which is not good.

So, today I left a message at my psychiatrist's office for a refill request, but it could take them up to 3 (business) days to send the request to the pharmacy, and it may not even be filled because my psychiatrist might want to see me before renewing the script, and my next appointment isn't scheduled until April 1st (though when I was away at a research internship I just did a phone consult with him for refills). Considering that the weekend is coming up, this is not a good position to be in. Usually when I'm out of whatever medicine and don't have an appointment scheduled anytime soon I just have the pharmacy fax in a request and get it later that day. Problem is, I don't think they do that with controlled substances (I could have sworn they've done that in the past though). Hopefully my request will be processed tomorrow and I'll be fine, if not, well...

I know it may take a couple days for withdrawal to kick in, but as we all know it could start much sooner than that. I'm not particularly worried about seizures since I'm on 400mg lamotrigine a day (still a definite risk though), but I'm definitely worried about the psychological symptoms and other physical symptoms.

So, any suggestions as to how I could potentially get a a temporary script to hold me over until my refill request gets processed (if it gets processed at all)? I know I could go to an urgent care clinic and get a temp script and I've done this before (I did this during the internship because that state where I was working and federal law doesn't allow for controlled substance prescriptions to be transferred over state borders), but this is frowned upon as I understand it at these clinics (plus it might make me look like a junkie trying to get my fix, but it probably won't if I bring in the bottle and they see the last filled date).

Thanks

Thelm did it only make your double vision worse or did it make other visual symptoms worse? Did it work as an antidepressant? What dose were you in?

It seemingly made only the double vision worse. As for an antidepressant I can't say because I wasn't on it long enough to notice any improvement. For dosage I was at 300mg XR daily.

I used to take 200-300mg+ every night for about 2 years for sleep and the muscle relaxant effects it had. I never really "tripped" in the sense of full blown hallucinations, but there were, at times, some classic effects of a normal trip like moving/breathing walls and whatnot (also, I noticed when I closed my eyes I would get very strange CEVs that looked like bolts of lightning and I fondly recall staring at wall socket for a good 15 minutes whilst sitting on the toilet because I thought the screws in the socket were spiders). That's what gave me HPPD which likely has to do with the acetylcholine system (DPH acts as an anticholinergic in addition to its antihistamine properties, particularly it acts on the mACH receptors) in the brain. Since acetylcholine acts as sort of a regulator for neural activity, it definitely has potential to worsen HPPD, which it very often does (though temporarily in most cases).

So, I try to avoid DPH from now on, but every once in awhile I have to take it because I have a multitude of allergies, mostly to foods. When I do, I keep it to 25-50mg. Even at those doses I get the classic anticholinergic effects, but no worsening of HPPD symptoms. I'm thinking a potential "cure" for me would be a short course of an acetylcholinesterase inhibitor which they use to treat acute anticholinergic syndrome, central anticholinergic syndrome, and chronic central anticholinergic syndrome (if you look those up you will see that quite a few of the symptoms are eerily similar to those of HPPD and there is a thread on here discussing the possibility). 

Are there any nootropics that are safe to take with HPPD? I'm trying to get some of my cognitive ability back since the lamotrigine and clonazepam basically make me into a zombie (tapering down on the lamotrigine though, but won't be tapering off the clonazepam until March/April).

Also, the bupropion has been a failure, saw a somewhat permanent increase in some visuals (double images mostly).

So, little bit of an update. I turned out to be a good candidate for the treatment, mainly because of my age and the severity of my depression (there's a lot more to lose as the evaluating psychiatrist said). Unfortunately, because of time constraints, I can't do the treatment as the only times the center does treatments is between 8:30am and 3:30pm which is when I just so happen to be in class/at work. Not to mention you have to do it 5 days a week for 5-6 weeks at a minimum. Also, it take 3 or so weeks to get approval from insurance and the company that owns/manufactures the machines

So, it's a no go from here because of logistical reasons. I did learn a little about it. Your first treatment is where they actually "personalize" it. They spend about 45 minutes pinpointing exactly where to focus the pulse so that the potential effects are maximized.

I also learned that it isn't particularly effective. It has about a 50% success rate nationwide, the clinic which I would potentially be going to has had 20 patients so far, 12 of which had their depression go away, 4 who had some improvement, and the other 4 either showed minor to no improvement (according to the psychiatrist).

I would consider ECT, but at least where I live, it's very hard to get ECT unless you've been committed or the situation you're in warrants it. The problem is, for ECT they put you under and it basically leaves you unable to function for a whole day, and there are far greater side effects and risks.

I'm no doctor though, this is just what I've gleaned from various support forums for benzo users who are tapering off their medication.

I know the Ashton protocol calls for a dry taper w/ diazepam substitution which I believe takes 26 weeks. The problem is that with a dry taper and diazepam substitution is that as you progress, the actual percentage reductions actually increase. With a liquid taper you can accurately control and maintain your weekly/daily reductions and they don't increase as you continue the taper. A liquid taper, although it takes longer usually affords little to no withdrawal symptoms since the reductions are so small. Another downside of the dry taper is that you have to get a prescription for a variety of diazepam doses plus other dosages of your original prescription, with a liquid taper you just keep your normal dosage and do a little math for your reductions.

I'm on 2mg daily (1mg in the morning, 1mg at night preferably an hour or so before bed). I've been on this dose for ~9 months, so this taper is going to be long and hard (probably upwards of a year and a half). I'm planning on doing a liquid taper between 0.1% and 0.5% daily, so about 0.7% to 3.5% per week until I reach about 0.0625mg or lower and then jump off at that point.

Short term is usually 4 weeks or less, at least according to literature and all that. Personally, I would consider it short term use if you're only on it for 3 months or less. Any longer and I would consider that long term use. I've been on clonazepam for 9ish months now, so long term use here.

The main problem with benzos is that, while they're not necessarily addictive, it's very easy to become dependent on them, especially with long term use. Not to mention, tolerance for benzos builds quickly, my psychiatrist said that tolerance would start kicking in around the 3 week mark. That's why benzos are risky. Once the tolerance starts to build, people start taking more to get the same effect as they had in those first few weeks thereby worsening their dependence on it. Thankfully, I didn't follow that route and stuck to my prescribed dose (though I have on occasion taken 1 or 2 extra if it was a particularly distressing day). Nonetheless, considering how long I've been on it, there's no doubt I'm dependent on it both physically and psychologically despite (mostly) sticking to my prescribed bounds. I could tell this was evident when I had to go a day without it because the pharmacy said it was too early to pick up my script. I did not feel well at all that day and who knows what would have happened if I had to go longer, and I am certainly not looking forward to tapering off this stuff.

Anyways, point is, benzos are a dangerous path to go down and you should tread lightly. Stick to what you're prescription says and you should be fine.

I got my HPPD from rampant diphenhydramine abuse as a form of self-medication for my insomnia and also just for a quick, cheap, and easy (depending on who you talk to) high to escape my troubles. My use went on for about 2 years or so, and I wasn't taking the normal dosage either, I was taking 300mg or more each night.

Anyways, antihistamines can cause HPPD because they affect acetylcholine transmission in the brain and acetycholine is extremely important in normal brain function (it acts as a sort of control neurotransmitter, it tells neurons/parts of the brain to turn on or off basically, but don't quote me on that). If you start messing with acetycholine, you'll start getting a bunch of problems, HPPD being one of them. The exact mechanism still isn't known, but it is believed to be related to serotonin, dopamine, and acetycholine.

Well, I'm on day 5 of bupropion, and so far so good. No aggravation in visuals and no unpleasant side effects like I had with SSRIs (with SSRIs I couldn't even make it past the first 3 days, felt extremely agitated, severe insomnia, a very odd stoned feeling half-way through the day, increased visuals, severe DP/DR).

I'm hoping bupropion goes well considering it's an NDRI/NDRA, so in theory it shouldn't affect visuals and might even attenuate them.

I'm at 200mg/day right now and I'll be at 300mg/day (extended release) about midway through next week.

My only concern is the potential for seizures as right now I'm currently being tested for temporal lobe epilepsy, but I'm on a relatively high dose of extended release lamotrigine (400mg/day) plus a high dose of clonazepam (2mg/day, but I'll hopefully be starting my taper in the next couple or so months), so seizure risk should be minimal.

Regarding seizures, it is believed that HPPD is a seizure like disorder, but not entirely. However, I've had episodes of blacking out, losing track of time, spacing out, and very odd episodes of "inter-consciousness" (that's what I call them) where it feels like I'm sleeping yet I'm still completely aware of my surroundings aside from sight (it just goes black). This isn't related to sleep deprivation or poor sleep either since I've had days where I've gotten little to no sleep and have not had these sorts of episodes, and there have been days where I've had an awesome night of sleep yet have an episode.

When I explained this to my psychiatrist he said it's either one of things, 1) plain ol' dissociation as a result of my multiple disorders or 2) temporal lobe epilepsy. So, I was referred to a neurologist specializing in seizure disorders whom I met with today. Went through all the standard tests, only failed the walking heel to toe test, the knee jerk test (not sure what it's called, you know what I'm talking about), and the follow my finger with your eyes test (could barely follow the guy's finger and even lost track of it at one point and just stared into space until he snapped me out of it). Also, during the eye test I had to fight the urge to move my head, like I cold feel my muscles wanting to move, but I had to fight back.

Anyways, I'm scheduled for an EEG and an MRI. I'm sure the EEG is going to come back saying I have epilepsy, but I think the MRI will be negative.

My two cents and best of luck to y'all.

So, long story short, I got a really bad upper respiratory infection about 3 weeks back which has evolved into acute bronchitis. Doc prescribed me azithromycin, prednisone, and a chlorphenamine-hydrocodone cough syrup (like good ol' prometh-codeine, but stronger and longer lasting from what I understand).

I know prednisone should be safe for the most part as it's a corticosteroid so it shouldn't have any psychoactive effect, but I've never taken this particular steroid in the past so I have no idea how it's going to affect me.

The two I'm most concerned about are the chlorphenamine and azithromycin, the former because it's an antihistamine with SNRI effects and the latter because I've read anecdotal reports of antibiotics causing a flare up in HPPD symptoms (which actually may be related to the Lyme disease hypothesis I read about a while back).

Would it be safe to take these meds or will it cause a flare up in symptoms?

It has certainly held me back academically, well considering I have 2 other conditions that also affect academic performance (shcizoaffective disorder and panic disorder) so I can't put all the blame on HPPD, but it certainly has played a part. Every one of my disorders hit me hard this quarter and it shows in my grades.

However, after I started medication (lamotrigine and clonazepam), the brain fog went away almost completely. I went from an IQ of ~115 to ~136 (which is in the range it was before) after I started medication. However, since both medicines "slow down the brain" (my psychiatrist's words), it takes me longer to come to an answer, which kind of screwed me in regards to time constrained tests you encounter in the academic world.

So, I'd say it has held me back somewhat, but it hasn't completely ruined my life.

So, I have an excruciatingly bad cough right now and am in dire need of relief (not to mention I have asthma along with this).

Right now my only options are OTC cough medicines  that contain DXM (not really fond of this) and of course your typical promethazine/codeine syrup (more keen to take this, but the promethazine I'm not really fond of because it's an antihistamine).

My other option is benzonatate. It's a topical/local anesthetic similar to other ones like novacaine and tetracaine. As far as I know, it isn't psychoactive so it shouldn't interfere with my HPPD and therefore this is the option I would like to pursue the most. Supposedly it works by decreasing the sensitivity of certain receptors in the lower airway and lungs which in turn reduces the autonomic cough response. Also, according to my dad, it's a miracle pill because it stops a cough dead in its tracks almost instantly (he's been to rehab multiple times and this is the only cough suppressant they give addicts since it has no potential for abuse)

Problem is, I won't be able to get this until tomorrow since all the urgent care clinics are closed now where I live and I really don't want to hit up the ER (my last visit cost me ~$1800 for a 4 hour stay wherein I only received 5 stitches, an injection of some weird, but highly effective local anesthetic, a chat with the county DMHP, and suicide watch for the duration of my stay).

Anyways, will I be fine if I take an OTC cough medicine until I can get into a clinic tomorrow? I don't plan on taking a massive amount of it, either the recommended dose or half that. I already tried half a dose earlier today and it didn't seem to affect my HPPD, but it didn't help much either.

Thanks

So, I met with my psychiatrist today, full session because of recent and persistent suicidal thoughts/ideation/planning (not relevant to this discussion). He bumped my visits up from once monthly half-session visits to once weekly full session visits for the reason mentioned above.

Anyways, because my depression is treatment resistant, or rather untreatable with medication (aside from bupropion, but he wants to hold off on that until I see a neurologist), he recommended that I either try ECT or transcranial magnetic stimulation (TMS) considering that both are highly effective at treating extreme depression for short periods of time (~6 months or so). He recommended TMS over ECT though because of the risks associated with ECT and subsequently referred me to a local psychiatrist specializing in treating depression, PTSD, and anxiety disorders with TMS.

Has anyone had experience with TMS? If so, did it have any effect on HPPD, positive or negative?

I know for depression they target the limbic system and frontal cortex. I mainly just worried about it making HPPD worse, however unlikely that may be.

I've been on lamotrigine going on what, 8 or so months now?

Anyways, it hasn't done much in the way of improving HPPD or anything for that matter. However, after a few meetings with psychiatrist, he believes that in addition to HPPD and the 3 other disorders I have (panic disorder, major depressive disorder, "mild" schizophrenia) I may also have temporal lobe epilepsy after I described to him sudden, unprovoked "blackout" periods where I would be in a profound state of consciousness where I was aware of myself, but not of my surroundings and I would experience incredibly vivid "visions". I also described to him normal blackouts where I would just blank for 30 minutes or so, come back, and be incredibly disoriented and confused for a good few minutes.

He said these were consistent with temporal lobe epilepsy symptoms and upped my dose of lamotrigine from 200mg to 300mg and referred me to a local neurologist specializing in seizure disorders (perhaps this neurologist knows about HPPD). So, the new dosage may be beneficial, who knows. I'm also hoping the neurologist will do some scans such as an EEG/qEEG, SPECT, maybe a few others which will hopefully shed more light on this.

I'm with Jay on this one. When I went to see my psychiatrist the 2nd time ever, after learning about HPPD, I brought every piece of relevant literature in that I could get my hands on. After he reviewed them (which he did that day to my surprise since he's usually a very busy psychiatrist), he gave me a call and said I should try clonazepam and that he had called in the prescription. Since then, we've been experimenting with treatments, the current one being lamotrigine + clonazepam. He also has some ideas about other possible treatments based on what he knows about neurochemistry.