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>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. 

 

 

 

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While I feel your pain and went through a similar thing when I was young, I do have some empathy for them. It is a VERY rare disorder, there is no cure and next to no real research to look through. Better to channel your energy into trying to make people aware of the illness and push for the medical community to do more clinical tests, rather than being resentful because doctors have to take guesses.

btw - having no previous addiction history means absolutely nothing about whether benzos are addictive... they are, massively.

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14 hours ago, Jay1 said:

btw - having no previous addiction history means absolutely nothing about whether benzos are addictive... they are, massively.

Benzodiadepines are only addictive if a) they are abused or b ) they are used everyday. Aside from that, the risk of benzo addiction is non-existent. Coupled with the fact that they have a very low side effect profile and LD50, it makes benzodiazepines extremely safe. 

Edited by Luke King
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Back in the early 80s I brought this condition up with my doctor.  He basically told me that it was my punishment for using psychedelics.  Ok, so that doctor was a jerk but it taught me that doctors don't know everything.  Some are just pill pushers and few are healers.  I don't hold any anger for what the doctor said.  It's just not worth hanging on to the anger.  That being said, to this day, I've never brought it up again with any doctor.  Thanks to this forum I plan to at my next physical.  We'll see what happens.  

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10 hours ago, Luke King said:

Benzodiadepines are only addictive if [they are used everyday].

Yes, so they are addictive. Heroin isn't addictive if you only take it once a week either.

I'm an advocate of beznos a few days a week, but I do that because of their insanely addictive nature. 3 months ago I chanced my luck by going from 3 days on/4 days off to 4 days on/3 days off and, after a month, realised I was getting withdrawals on day 3 of the off days... First time I ever had withdrawals and proof that these pills need constant monitoring and attention. Dosage also plays a big role, due to the large half life. If you take 4mg every other day, you'd soon be addicted.

This is my regime now:

Lorazepam (2.5mg) - Thursday 6pm

Clonazepam (1mg) - Friday 9am

Clonazepam (1mg) - Saturday 9am

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9 minutes ago, Luke King said:

How do you even get these substances? Doctors here won't prescribe anything stronger than valium, and it takes like 50mg of valium for HPPD symptoms to completely disapear. 

Pay out of pocket if you can. The places I paid out of pocket were more apt to prescribe benzos. The places that took my insurance refused.

Except the new place I'm going to. They're gonna give me a new script of klonopin cuz I have my old bottle and they know I haven't abused it.

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Be careful not all Benzos are as safe a Kpin. 

 

Don't get too wound up with the doctor's helpfulness right now.  We have all been through the same exact circumstances.  And in most cases, it is not going to get better, the quality of care from doctors. 

 

But there may be some merit with the two things you mentioned 'being guinea pigged' and HPPD. 

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11 hours ago, Luke King said:

How do you even get these substances? Doctors here won't prescribe anything stronger than valium, and it takes like 50mg of valium for HPPD symptoms to completely disapear. 

My neurologist was fine with it, in fact he commended me on my 3 day plan. I have had normal doctors say no though... I just change doctors until I find one that says yes. (in the uk, we have free health care)

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8 hours ago, MadDoc said:

Jay, you must have a strong constitution to be able to regulate your medication.  I know myself and I suspect I would rapidly fall into abuse.  It's just in my nature unfortunately.  You should be commended!

I could have easily abused my script but the horror stories I've read about benzo withdrawal and the fear of addiction kept me from it.

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7 hours ago, TheMythos said:

I could have easily abused my script but the horror stories I've read about benzo withdrawal and the fear of addiction kept me from it.

Yet im the one sitting here who doesnt find them all that helpful in the least

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8 hours ago, TheMythos said:

I could have easily abused my script but the horror stories I've read about benzo withdrawal and the fear of addiction kept me from it.

Same here.... Once I realised they helped me (saved my life, i think), I knew that I needed to do everything I could to make sure I never had to go through withdrawals and stop taking them.

As someone who was taking speed and/or mdma everyday for 2 years when i was a teen, it's not in my nature to be so restrained :D

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