16 replies to this topic

[Nedd]

I understand the relief Benzo's allow when it comes to HPPD symptoms, including obviously the reduction in anxiety and its related symptoms. I am also aware that these drugs can help you to not care or notice the visual disturbances that can sometimes deeply agonise a HPPD sufferer. But has anyone experienced an actual full or even part recovery from any Visual symptoms?

[jay]

i've not heard of anything like that... if it happened, my 1st assumption would be the hppd had healed naturally, and benzos just covered up that healing process, not helped it. But i'm no expert... hppd feeds on stress/anxiety... so maybe if you caught hppd early and went on klono... cutting that anxiety/hppd cycle for a month might help.

my personal view is to avoid all meds for at least a year though... 1) give your body time to heal, without additional chemicals in the mix and 2) learn to cope with hppd life without meds

[Nedd]

Thanks for the response,
I appreciate your thoughts, I, personally started on Clonazepam after about 6 months of having HPPD but now hopefully i'll be off them soon to try a Vipassana meditation retreat to help me to learn to cope without the meds

[rollingregret]

It reduced my visuals to the point where I didn't care anymore, which honestly, is basically reducing them to 0. When what you see doesn't seem odd to you, it doesn't bother you. Then again, I didn't have huge tracers or after images for 5 seconds, but the usual stuff, extremely bad visual snow, certainly some afterimaging, floaters galore, it was bad.

Used to be on 2mg/day, then went up to 4, now am on 2.75 (been trying to taper).


edit: Sorry Nedd, I forgot I had already replied to you. I guess you want a greater sample size. Just from my own knowledge, a lot of people who were on clon (before I got on it) from the HPPD board reported improvement of symptoms, sometimes to 90%, sometimes their perceived 100% and it wasn't rare.

[2cpGotMe]

yea but was the reduction in symptoms actually a reduction in the stuff you were seeing or just the anxiety about what you were seeing?

[Ghormeh Sabzi]

I don't think so. I would assume they just mask the symptoms, and make it harder to recover long-term, as they down regulate GABA, etc.

Vipassana is a more viable long-term solution, if it works. Did you try this already? How did it go?

[OliverW]

Be careful when getting of the kpin... Or any benzo for that matter. In my experience, barbiturates (phenobarbital) worked better to alleviate the visuals. It didn't cause "recovery" by any means... And I opted to get off of it because my mental issues were compounded by the drug. Short term memory went down the drain... So I'm off of it now, and to be honest, visual stuff is worse than before I was on it. Phenobarbital specifically has a very long half life, and as a consequence, it takes a long time do get through the post acute withdrawal... So I am struggling with anxiety and bad visuals. Some days it is better than others, but I can expect to feel this way for a few months if not an entire year! And yes, it by no means "cures" anything... It mostly masks the symptoms. It made reading easier, and other than intensified brain fog type stuff, it really helped. So if anyone is dead set on using anxiolytics... Barbiturates are the way to go. Other than a higher risk for OD, they are much better in the long run!

Just be careful about coming off this stuff... Seizures happen for sure... I've been lucky enough to have a few of them... And I agree with Jay1... At least wait a year. Also, don't forget about their addictive properties! That is a major reason I quit that stuff!

[rollingregret]

yea but was the reduction in symptoms actually a reduction in the stuff you were seeing or just the anxiety about what you were seeing?

both

but as OliverW said, it's more or less masking everything. The positive about clonazepam in my case specifically is that it taught me to not be freaked out by my visuals so even as I'm tapering (I've hit a brick wall, probably my limit) and my visuals are perhaps intensifying, I'm not really noticing it since I've gotten used to them being part of my vision over the past few years.

My real problem is the return of the physical symptoms which you can just ignore like you can the visuals. When they occur together, I think people new to HPPD feel as though their visuals hurt whereas it's more the physical symptoms associated with them that are causing that perception.

If you don't have physical symptoms, the visuals will fade. I never thought I could get used to them, but I absolutely did. I wonder how many of us have just visual symptoms or visual + physical.

[OliverW]

How far have you gotten with your taper? What specifically is causing your "brick wall"? As for me, I have both visual and mental stuff... It seems like anyone who has it long term, like you said, has the concurrent mental issues. It seems like most of us have both... Maybe some of the admins could start a tally thread. Or poll... I think that is how it is spelled.

[Nedd]

I don't think so. I would assume they just mask the symptoms, and make it harder to recover long-term, as they down regulate GABA, etc.

Vipassana is a more viable long-term solution, if it works. Did you try this already? How did it go?

Hey, i don't really know much about general psychological effects of benzo's, would you know if this down regulating GABA or anything else likely to effect long term recovery even if i've just been on the drug for two months or so?

Yep got back from the ten day course just over two weeks ago. Initially i was disappointed in that i didn't feel that all that different from when i went in, especially after speaking to others at the end of the course who reported already feeling great effects. However i have been trying to keep up practice everyday since and have done so to a certain extent. This i am sure has helped me if only slightly to not get so down and depressed about this (although must add today hasn't been great). Unfortunately i have since developed tinnitus however without this meditation i would have found coping with my visual symptoms as well as this new tinnitus much harder. So if you are considering it i'd definitely recommend that you give a ten day course a try

[OliverW]

Down-regulation, in the context in which it was used, means that the brain is compensating, or over compensating, for the over-activity of a certain neurological system. Benzo's do not, under strict adherence to the definition, down-regulate the GABA receptors. In fact, the drugs themselves up-regulate by sensitizing the post-synaptic cleft to GABA within the synapse. Benzo's do this by increasing the frequency at which GABA signals are communicated... In other words, the sedating or inhibitory effects of the GABA system are amplified or increased (Barbiturates and benzos respectively) through interference of the ion pores along the axon (basically the telegraph wire of the nerve cell). Although sedatives (barbs, benzos) up-regulate the GABA system, the brain compensates, or down-regulates, through the up-regulation of glutamate... Glutamate is a major excitatory, or stimulating, receptor system in the human brain. For all intents and purposes for this discussion, it is anti-GABA. Gluatmate along with acetylcholine are responsible for the prioritization and categorization of memory. To simplify things, they are key players in the formation of short term memory, as well as the recollection of long term memories. When GABA, the chief inhibitory transmitter, is up-regulated... This means that glutamate is being activated to compensate for inhibition of nerve signals.

Inhibition is the reason people have a hard time with memory formation while on benzos or barbs. It is also the reason that they help with some of the visual symptoms of HPPD, as well as overactive mental issues. I would guess that they decrease visuals by decreasing the communication and complexity of communication between the occipital and parietal lobe. From what I understand, the occipital lobe plays a major roll in receiving information from visual stimuli. The parietal lobe then takes this raw sensory information from the occipital lobe and integrates it... Making sense out of movement, facial expressions, etc. People with lesions of the parietal lobe have hallucinations as a part of their symptoms, other tasks, like interpreting letters and words, become harder as well. I digress... So benzos work at decreasing complex communication between the visual centers of the brain... Doing so, they simplify sensations such as movement... Simpler information creates simpler perception. As you quit taking the benzos... The glutamate systems are so up-regulated that they go out of control... Causing increased visual disturbances and in extreme cases, seizures.

Anyways, to answer your question, benzos will temporarily mask the symptoms, but for me anyways, when I quit taking them, my visuals got a lot worse for 7-10 days and they have still not decreased in intensity to the point they were before I was on benzos. So it would seem reasonable to say that they have been detrimental to my recovery in the long run. But this is just anecdotal... I am only one person, not a statistic. Also, the long term WD from benzos could be factoring into the intensity of my visuals. Perhaps they will slowly return back to the point they once were. Either way, it is a short-term benefit vs. long-term benefit/consequence argument. If you can do it without benzos, you are probably going to have a better shot at recovering from your HPPD. Also, sedatives helped my visuals, but they compounded my lack of mental clarity and my inability to form "normal" thought processes and memory. Not to mention they are addictive !

[Ghormeh Sabzi]

Hey, i don't really know much about general psychological effects of benzo's, would you know if this down regulating GABA or anything else likely to effect long term recovery even if i've just been on the drug for two months or so?

Yep got back from the ten day course just over two weeks ago. Initially i was disappointed in that i didn't feel that all that different from when i went in, especially after speaking to others at the end of the course who reported already feeling great effects. However i have been trying to keep up practice everyday since and have done so to a certain extent. This i am sure has helped me if only slightly to not get so down and depressed about this (although must add today hasn't been great). Unfortunately i have since developed tinnitus however without this meditation i would have found coping with my visual symptoms as well as this new tinnitus much harder. So if you are considering it i'd definitely recommend that you give a ten day course a try

I wouldn't think a couple of months would be too harmful.

Oliver gives good advice - sounds like he knows a lot more about it than I do currently.

[zukov]

Good post oliver. My record without klonopin was 16 days in which the intensity of the visuals varied. sometimes better other worse. But you reach a point where anxiety and suicidal thoughts alarmed me enough and had to return to 0.5mg. Interestingly the role that anxiety as a modulator of the visuals. I am firmly convinced that removing 70% anxiety disorder will become more manageable.

[OliverW]

What do you mean by removing 70% of GAD? I have been diagnosed with GAD among a plethora of other conditions since I was a toddler. If you are indeed an anxious person, I would recommend therapy, specifically CBT. I went through a substance abuse treatment program that was mainly based in CBT. I can only speak for myself, but it has done wonders for my own life. It has also helped my interpersonal relationships considerably by decreasing my social anxiety. This is huge for me because a major portion of my addiction was self-medicating anxiety and depression. Which are both limbic, axis I disorders. Anyways... My visuals are still bad on a day to day basis, but I don't get intensity spikes due to panic attacks, paranoia, etc. Over 6 months clean and free of anxiety medication!

[Nedd]

Safe Oliver, appreciate the informative post.

Would you say though that after coming off benzos, although your visuals are worse, are they any easier to cope with? or worse for that matter

Just curious to know if you don't notice visuals so much when you are on benzos if this factor continues to when you taper off?

[1998]

Good job Oliver, I hope someday I can say the same with klonopin. I thought the first yr. of hppd would be the hardest battle of my life.
Getting off klono after a decade is far harder!

[OliverW]

Ohhh man I don't really like to even remember coming off the benzos. At the time I was also going through methadone withdrawal, and I was pretty much suicidal for at least two months. Visuals didn't start getting any better until my 3rd month of sobriety... And up until that point they would get worse and worse each day! But there is a light at the end of the tunnel for sure. I wouldn't go so far as to say that it is easier to deal with the visuals without benzos/barbs, in fact it was easier to deal while on them... But everything was easier to deal with because they were a partial escape from the stresses of life. So I hate to sound pessimistic but that was the reality... For me anyways. If any of you guys reading this are trying to get off of benzos, for gods sake try get some medical supervision (at least if you can afford it)... Seizure risk is very real... But things have to get worse before they get better... Another 24 under my belt!