mycall81

Sounds exactly like spinal stenosis.

@ghormeh. What sort of pain do you speak of?

@brake thanks for reply. Did you have starbursting from headlights? My major issue. Lights look completely washed out. Like high high high beams. Also, any history of migraines?

Anyone??

Very concerned.

Has never been this bad.

Anyone with concurrent migraines?

Anyone had their light sensitivity, especially to glare and headlights, go away???

They are triggering immediate headaches.

I had a massive relapse starting 2-3 months ago.

I'm smack dab in the middle of a very concerning episode. I only smoked pot a few times 3-4 months ago. Now I have insane visuals and constant headaches. I REALLY hope it goes away. DO NOT DO ANY DRUGS.

I wonder if I can pick your brain. It seems like you all have some sort if grasp on what improves/exacerbates people's symptoms.

I'm a 33 yo, 15 year "recovered" HPPDer. No specific identifiable trip that caused it all those years ago. I did LSD ~ 4 times, ecstasy ~ 5 times, mushrooms twice, and smoked a lot of weed before it onset. I recall 1 very bad trip on mushrooms but my symptoms did not start right afterwards. I do remember taking a gravity bong hit that caused a panic attack and legit, immediate flashback that may have triggered everything. Who knows?!

Anyways, I was initially treated with Klonopin and SSRIs 15+ years ago. It seemed to help, so I went off to college and figured my problem would eventually resolve. I continued smoking pot a ton throughout college and for years afterwards. I did have occasional phases of despair and hyper focus on my visuals and derealization, but all in all, I was stable on Paxil, alcohol, and pot.

I graduated from college, time passed and I grew a bit stagnant with my life. Was working in a restaurant despite my college degree, partying all night, and just going nowhere. I abstained from any hallucinogen use by the way. Just smoked loads of weed and drank.

I decided that weed wasn't helping my lack of motivation, so I quit, cold turkey. I focused my sites on grad school, took my prerequisites, interviewed, and was accepted. I moved to a new city, met all new friends, and became a professional in the medical field.

There were times that I resorted to focusing on the symptoms that used to plague me so much (trails, floaters, negative afterimages). This was usually when I was very anxious about a clinical rotation or something, but it would pass with no scone thought after a week or two. I was taking a dose of Paxil 15 mg. When I was VERY anxious, I would have my psychiatrist Rx me some 0.5 mg Klonopin to take as needed, but this was infrequent.

I have been working for the past 2 years and have had minimal focus on my visual symptoms. It has been as though they weren't even noticeable unless I actively searched for them. Occasional I would obsess over my floaters, but otherwise, all was stable. Felt calm. Considered myself "cured".

Things changed about 2-3 months ago.

I had been dealing with an "on again, off again" long distance relationship that caused a ton of stress in my life. I was not eating, not sleeping. I was obsessing on social media, constantly asking friends for advice, thinking of the worst case scenario. That lasted for about 2 months. I resorted to taking Klonopin ocasionally to help fall asleep. I probably took 0.25 to 0.5 mg every third night for a month. It definitely helped. The entire time I was dealing with the break up, I didn't ever dwell on visual issues.

Things calmed down with my anxiety but I was still beside myself about the girl. During Christmas time, while home with family and old friends, I was having some drinks and decided that I'd join my friends in a joint. It had been 8 years since I'd smoked pot. It was fine. Didn't have anxiety or anything. Felt fine the next day. A few days later, another group of friends were smoking, and I figured, "screw it", I'll smoke again. Again, no big deal. Felt fine afterwards. A couple days later, I smoked a third time. This time I was very high. Didn't panic or anything, but needed to go straight to sleep. I remember waking the next day a bit foggy, in fact, for a few days I felt regret for smoking and found myself dwelling on it, dissecting how I felt and if it caused any changes. I didn't notice any immediate alterations or exacerbations to my visual symptoms.

That was 3 months ago. I told myself I would never smoke again because I felt a bit of brain fog, perhaps some depersonalization, but nothing really visually disturbing. I did however hit a joint 1 more time while on a ski trip. Again, I didn't notice any immediate changes to my vision, at least not any severe ones. Maybe some poor night vision.

2 months ago, I got real drunk and passed out and felt what seemed like CEVs with swirlin geometric patterns which I can never remember having. Since then, I have felt increasingly more spaced out, staring beyond objects, and experiencing pressure in my head. Understandably, I have grown hyper aware of all these things and began looking for visual issues. I see floaters constantly, enough to really affect my work. I see negative afterimages MUCH more readily. I notice trails off of most things now, especially when looking for them.

My biggest issue is that I have a daily headache that comes and goes. I still have a pressure in my head and I feel just out of it. Headlights are INSANELY bright and starbursting more than I have ever noticed. Glare KILLS my eyes. I even noticed a few objects wavering when I stare at them. These symptoms all seem to be worsening despite no recent alcohol or pot.

I apologize for such long story, but I thought it necessary to give u my background.

My question is this...have you heard of weed causing this intense of a recurrence of HPPD symptoms? I can't for the life of me imagine that smoking weed a few times would cause such a drastic shift in my perception. It is affecting every aspect of my life. I am obsessing over it, thinking that I just put myself back 8 years because I was stupid. Ive heard weed can exacerbate symptoms. Does this mean temporarily? Permanently? If only temporary, how long have you heard it takes to normalize??

I have a history of migraine with aura and wonder if this may be some form of persistent migraine aura like visual snow, although, I don't have too much static compared to those folks. When I obsess over it on forums, I convince myself that this is permanent.

I see Dr. Abraham occasionally. He believes this is due to weed of course and doesn't have a crystal ball to determine if this will improve.

I thought my shit was under control. To the point where I didn't even notice it. Now I'm a basket case. I take Paxil 15 mg still. Haven't had a Klonopin for over a month. I'd rather avoid taking again unless necessary. I wonder if having taking a few of those added to this recurrence. People would say the stress of the break up contributed, but I had no focus on visual symptoms when dealing with that.

Again, sorry for such a novel. I am in need of some tried and true guidance at the moment. Needless to say, I'm done with weed.

Thank you for your time.

I saw Dr. A 2 weeks ago. He is still in practice. Doesn't accept insurance though. Boxer you in Boston??

Hello. Did your daily headaches resolve? I am a migraine sufferer as well. I get classic migraines with aura. I have had hppd for 15 years now. The past 5 or so years have been much better then ever. Minimal focus on any visual symptoms. I had been drug free for 8 years aside from an occasional dabble in coke. I had been drinking throughout all the years with no issues in regards to hppd.

I smoked pot for the first time in 8 years ~4 months ago and haven't been well since. Seems like my visuals have progressively worsened to stronger trails, after images, and mild snow. I now have a new onset of severe light sensitivity and starbursting of headlights. Also, I have a daily headache that comes and goes. It seems to be worsened whenever I look into light.

Wondering what this is all about. Is the headache from the light sensitivity or vice versa? Is this some mild form of migraine? Persisting aura? The headaches are not severe by any means.

Any help is appreciated. I spoke with Dr. A who didn't think the headaches had any direct relationship to the hppd. He thinks it is a manifestation of anxiety/stress.

Have any of you experienced a worsening of starbursting with a recurrence of HPPD? I never had that symptom before when I first had HPPD many many years ago. I was seemingly free of symptoms for years and like an idiot, smoked weed again for "old times sake". Few weeks after developed light sensitivity, start bursting (especially of sun reflections and headlights), more pixelated vision, trails, afterimages.

Trying not to focus on the visuals in hopes they will slowly resolve. Been 2 months now with minimal to no improvement. Is it possible to bounce back?? Has anyone had starbursting go away?

Obviously not smoking, or even drinking (which is usually a favorite pastime).

How long have u had symptoms? What were/are your visuals? What triggered them?

In the long term weed pretty consistently is known to make things worse, that's why I quit.

What have you found is the consensus with weed smoking on the site? Have u heard people smoke and it PERMANENTLY worsens symptoms?

I smoked for the first time in 8 years a couple months ago and have noticed that my visuals have been MUCH more prominent since then. Had been seemingly symptom free for last 3 years and now all is back.

Point is, I would advise against the risk. My fear is that it won't ever improve.

Can u fill me in on neurofeedback?

Don't need drugs to feel high. As you age you will probably forget about weed, it's not that fantastic. As people that have been fightning HPPD for years relapsed due to a few puffs of a joint, I would never touch it again, so you should forget about that thought and get high on things naturally in life that won't effect your HPPD.

I feel like I'm a great example of one of these people. Hadn't smoked weed in 8 years. Hardly ever looked at my visuals or even thought about HPPD. Puffed 3 separate occasions about 2 months ago to try and reduce some anxiety about a relationship issue. Few weeks later, fell back to all my visual symptoms and now have this chronic migrating headache. Wake up every day regretting smoking because, "what if I put myself back to full blown HPPD permanently?!"

Heed my advice. Do not smoke weed!! I just hope that with time, it will resolve!!

The question is, how long after smoking will the HPPD be more heightened??  Does that eventually fade?  Any insight?

@lethargicacid  Thanks for the post.  It seems so weird to me.  I thought I was mostly over HPPD.  I almost NEVER focused on my floaters, but since smoking, I see them or focus on them all the time.  I don;t know if I am just anxious or if I changed something "permanently".  How could smoking alter my brain permanently though?!  Keeping fingers crossed that it will slowly fade.  What is this "3 month" theory that Jay seems to reference?  That after smoking, HPPD will be flared for 3 months??

When you say, I can't smoke pot, what do you mean?  Have you tried and grown worse?  I made a post the other day and had no response.  I smoked pot for the first time in 8 years.  Had HPPD for 15 years, but mostly, has been well controlled.  Anyways, after smoking, I noted ALL of my visuals returned - especially floaters! I have become obsessed with staring at them.  Also, everything is back to looking 'off'.  I blame the pot, but it seems like the symptoms are worsening since smoking 2 months ago.  Anybody know if this is a commonality with us HPPDers?  Ya think it'll go away?  I'm really getting scared!  

Just a question...

I'm an HPPDer for ~ 15 years now.  I had abstained from any hallucinogens, including marijuana for the past 7-8 years.  I do drink alcohol and coffee regularly.  My symptoms had been well controlled and rarely noticeable for years.  I'm on Paxil 15 mg daily, and have been for many years.  I used to suffer from constantly watching floaters, trails, head pressure, and general spaciness.  

About 3 months ago, I went through a stressful time involving a break up.  My anxiety levels were high, to the point where I asked my doc for a refill of Klonopin, which I hadn't taken in years.  During this emotional stressor,  I never focused on, or even noticed the old visual issues.  That is, until, while back in my home town for a week, I decided that it would be a good idea to smoke some pot with my old buddies.  I felt as though it would be harmless as my trippiness had essentially resolved.  I smoked 3 times in ~ 2 weeks.  No real 'freak outs', just got real high one time and had to pass out.  

Ever since the last time smoking, ~ 2 months ago, I have felt derealization, floaters have become much more apparent, some visual snow, more sensitive to light, and I even notice occasional wavering of stationary objects (because I'm staring so much).  My head feels very pressurized and eyes feel like they are straining.  The symptoms seem to be growing steadily more apparent.  I'm not sure if this is because I've started obsessing over it, or if I truly am completely back to full blown HPPD mode.

I wonder if any of you have had similar recurrences from simply smoking pot.  If so, did the intensity of your symptoms fade again over time?  What would the mechanism be of marijuana triggering seemingly undetectable HPPD?  Is it actual neurotransmitter/receptor imbalance?  Neuroplasticity?  Anxiety?  It seems crazy that some pot would reactivate my symptoms for such a long time, so suddenly.  

Thanks for taking the time to listen.  My patience is running thin.  I need to get back to my old self.  Finding it difficult to concentrate at work and getting a bit depressed.  

I would advise against it...

I was pot-free for 7-8 years.  Did not touch it or have any desire to do so.  It was to the point where I hardly dwelled on the symptoms that had bothered my for so long.  Over the past 2 months, my anxiety levels had been heightened secondary to a breakup.  I was having trouble sleeping, nauseated, no appetite, and just overanalyzing.  I was with some friends over the holidays and they were smoking.  I said, "screw it", and smoked on 3 different occasions, thinking that maybe it would help me forget about her and enjoy myself.  Well, ever since then, the anxiety is still there, but now I feel much more derealization and cannot stop focusing on all the things that had plagued me for all those years, especially vitreous floaters.    I am extremely disappointed in myself for going back to it and would say that weed is a no go for anyone who has our issue.  It's to much of a toss-up whether we will have a bad reaction to it.  I just hope I haven't set myself back 7-8 more years and that this focus on my symptoms will fade quickly.

I would advise against it...

I was pot-free for 7-8 years.  Did not touch it or have any desire to do so.  It was to the point where I hardly dwelled on the symptoms that had bothered my for so long.  Over the past 2 months, my anxiety levels had been heightened secondary to a breakup.  I was having trouble sleeping, nauseated, no appetite, and just overanalyzing.  I was with some friends over the holidays and they were smoking.  I said, "screw it", and smoked on 3 different occasions, thinking that maybe it would help me forget about her and enjoy myself.  Well, ever since then, the anxiety is still there, but now I feel much more derealization and cannot stop focusing on all the things that had plagued me for all those years, especially vitreous floaters.    I am extremely disappointed in myself for going back to it and would say that weed is a no go for anyone who has our issue.  It's to much of a toss-up whether we will have a bad reaction to it.  I just hope I haven't set myself back 7-8 more years and that this focus on my symptoms will fade quickly.

Thanks again for your input.

I'm actually finishing up a medical program right now and know all about Wellbutrin (and many of the other meds people on here refer to). I tried Wellbutrin for a brief period of time about 5 years into my HPPD. I can't remember if it was effective...

I try to avoid experimenting with too many medications. If I can be on one medication for the rest of my life that will keep me from overanalyzing everything, sign me up. I spend hours every day internalizing... "What should I be thinking right now? Does that look normal? Do people notice me acting weird? My head feels weird."

My HPPD symptoms, as of now, are mostly comprised of a steady DP/DR and distracting floaters. Sometimes I'm annoyed by negative afterimages. But mainly, everything has that "glazed-over", two-dimensional look to it, that makes life seem like I'm viewing it from deep behind my eyes.

I have spent many years coping with alcohol, but I'm doing my best to abstain. This is causing a noticeable elevation of my symptoms.

I have a hunch that depression and anxiety run in my family. It may have popped its head out sooner or later, even without the HPPD.

Do you still have symptoms? How is life going for you?

I wonder if it really is a brain injury with symptoms that will eventually subside. I have had HPPD for 12-13 years now, since I was 17.

I would love to know if being on an SSRI for that long permanently rewires a person's chemistry.

I was initially treated with Klonopin and remember it working...almost to the point where I thought I was cured. May be time to revisit those days.

Thanks. I plan to continue with the increased dose of Paxil for a month or so, see if there's any improvement, and if not, totally revamp my pharmacological regimen.

The biggest problem is that I've been on Paxil in some form for ~10 years now. I've tried to get off it with no success. I haven't tried bridging my ween with a different SSRI. That may be necessary to cope with the w/d effects associated with Paxil. I am not suicidal per se, but I just don't want to participate in anything. I feel worthless/damaged.

Have you noticed whether the 0.25 mg of Klonopin causes a notable sedation? I need to be as alert as possible for my work. One of my biggest issues is this fuzziness that I cannot shake. I try to avoid alcohol, get 8 hours of sleep, exercise regularly, but no matter what I try, I remain in a fog.

Hey all. It's been a while since I have visited the site. Been very busy with school.

Here's the latest.

I was on 20 mg of Paxil for a very long time. I didn't feel great on this regimen (always flat/tired, rarely laughing) , but I was also able to cope better with my symptoms. Over the past 6 months or so, I've tried to ween off of it (with my psychiatrist's blessing), first dropping to 15 mg for a few months, then down to 10 mg.

The program that I'm in is very stressful. I've noticed lately that I've become more introverted, more focused on my visual symptoms, and especially more "foggy" and "depersonalized/derealized". I have difficulty concentrating or retaining/applying new information. I spoke with my doc who suggested I increase my Paxil back to 15 mg. He is convinced the recent decrease in concentration is just a manifestation of anxiety.

I'm not sure if this is the right med, but I've been on it for so long that I don't know any different.

I saw Dr. A who recommended I start Klonopin .25 mg BID, but I'm worried about starting a benzo long term.

Oh yeah, I partook the Sinemet trial, with no effect. Any suggestions?

I'm very depressed with the whole situation. It's been going on for 12 years now. There has to be some relief while still preserving some sort of personality or ability to contribute emotion to this world.

Hey Swamp.

I live in the Boston area and hope to see Dr. A sometime soon.

Would you mind if I ask how he charged you for the visit?

Was it all out of pocket?

Just a report as to how the trial was...

I sat in front of Dr. A and for the first time in 14 years someone told me I have HPPD. That in itself was well worth the trip. I now don't have to convince doctors and psychologists that I have some strange disorder that none of them have ever heard of. Obviously I can't say the name of the drug that I was given but I can tell you this; the drug was never meant as a cure all. It was more of a spot treatment and its half life was less then a couple of hours and has the potential to be pretty harsh on the liver. This trial was obviously about defining mechanisms of HPPD and I was happy to be a part of it even though I was in the minority of people who the drug didn't help.

Dr. A is a brilliant man, but he is a man nonetheless. I have been suffering some pretty heavy depression, frustration,anxiety and insomnia for the last several months, which the depression and frustration was very new to me. After talking with him, I was a bit surprised at his suggestions. He first told me that he didn't have any firm evidence that SSRIs are contraindicated in HPPD, and if clinically needed, he would treat many folks with them without difficulty. Obviously we are all different, but I know from my experience that effexor made me think I was dying and I was a bit surprised that he was against, or unaware of, what I may have mistakingly thought was a staple of HPPD lore. He then made the suggestion that I get on a daily low dose of Klonopin and refuted any ideas of developing addiction or withdrawals from the drug, which knowing of a lot of users experiences here is pretty difficult pill to swallow (pun intended). I was very surprised but I do understand that when you put someone up on a pedestal as I had with him that finding out he isn't perfect is all the more disheartening.

Above all, it was a great experience and he was extremely knowledgeable and I suggest doing the trial if only to finally get a diagnosis and see the awesome Boston area. Me and my wife spent 6 days there and it was by far the best vacation I have had in awhile. I was able to get him to talk to my psychologist and finally say I have HPPD and that I need CBT over SSRI for my mild depression.

Please believe me when I say that I am not bashing Dr. A. I thought that the expense was so well worth it to talk to the man. I just wanted to share my experience and thoughts.

Drop to my knees and kiss the sky