Spartan Posted July 29 Report Share Posted July 29 Hello Has anyone had an increase of visuals from lamotrogine? I just went up to 3 tabs thismorning and had quite a heightened day visually, possibly with some other side effects. Will stick with it hopefully will subside. Thankyou Link to comment Share on other sites More sharing options...
brake Posted July 29 Report Share Posted July 29 1 hour ago, Spartan said: Hello Has anyone had an increase of visuals from lamotrogine? I just went up to 3 tabs thismorning and had quite a heightened day visually, possibly with some other side effects. Will stick with it hopefully will subside. Thankyou No never, but I did have some allergic reactions. My doctor was also open to the idea of prescribing Lamictal along with Klonopin. Link to comment Share on other sites More sharing options...
James3524 Posted July 29 Report Share Posted July 29 12 hours ago, Spartan said: Hello Has anyone had an increase of visuals from lamotrogine? I just went up to 3 tabs thismorning and had quite a heightened day visually, possibly with some other side effects. Will stick with it hopefully will subside. Thankyou I have read some old comments on here about Lamotrigine worsening visuals, but I have never heard of permanent worsening. Your worsening of visuals may just be due to your body adjusting to it. Link to comment Share on other sites More sharing options...
Spartan Posted July 29 Author Report Share Posted July 29 13 hours ago, brake said: No never, but I did have some allergic reactions. My doctor was also open to the idea of prescribing Lamictal along with Klonopin. Ok great I think I originally got this idea from you and suggested it to my doc, now we are implementing with klonopin. Possibly just had a bad day. Thankyou. Link to comment Share on other sites More sharing options...
Spartan Posted July 29 Author Report Share Posted July 29 2 hours ago, James3524 said: I have read some old comments on here about Lamotrigine worsening visuals, but I have never heard of permanent worsening. Your worsening of visuals may just be due to your body adjusting to it. Yeah absolutely agreed, Likley adjustment period. Had quite a cathartic day. Thankyou. Link to comment Share on other sites More sharing options...
AF44 Posted July 30 Report Share Posted July 30 On 7/29/2024 at 3:52 AM, brake said: No never, but I did have some allergic reactions. My doctor was also open to the idea of prescribing Lamictal along with Klonopin. Lamicatal and Klonopin together are a great combination in my opinion. I take both (along with some other meds) but it seems like the Lamictal “enhances” the effects of the Klonopin, or maybe vice versa. I wanted to be a pharmacy tech and I took a couple of classes at the community college (before I worked as a pharmacy cashier and realized I did NOT have the skill set or manic energy to keep up!) anyway, i learned there are 3 I think drug relationships and they all have names but I can’t remember. One is that one drug increases or decreases the effects of another. Another is that 2 drugs together increase the effects of each or decreases the effects is each. And one is that neither thing happens and they don’t have any effect on each other. Sorry, right now I’m having total DP/DR so I probably sound like a moron. But anyway maybe the Klonopin and Lamictal work together to increase the effects of one another? Link to comment Share on other sites More sharing options...
yarkadin Posted July 30 Report Share Posted July 30 AF44 you write Lamictal and Klonopin are a great combination and you are taking both, but you also write that you have total DP/DR... so it has no impact on DP/DR. Does this combination of drugs do anything for the visuals? Link to comment Share on other sites More sharing options...
brake Posted July 30 Report Share Posted July 30 (edited) 2 hours ago, AF44 said: Lamicatal and Klonopin together are a great combination in my opinion. I take both (along with some other meds) but it seems like the Lamictal “enhances” the effects of the Klonopin, or maybe vice versa. I wanted to be a pharmacy tech and I took a couple of classes at the community college (before I worked as a pharmacy cashier and realized I did NOT have the skill set or manic energy to keep up!) anyway, i learned there are 3 I think drug relationships and they all have names but I can’t remember. One is that one drug increases or decreases the effects of another. Another is that 2 drugs together increase the effects of each or decreases the effects is each. And one is that neither thing happens and they don’t have any effect on each other. Sorry, right now I’m having total DP/DR so I probably sound like a moron. But anyway maybe the Klonopin and Lamictal work together to increase the effects of one another? Yes I found Klonopin to "enhance" everything lol. I'm not a full blown expert (although I did some research) but I think once you start combining things, it might get harder to pinpoint what's causing what plus the synergistic reactions could be completely unique in themselves. Edited July 30 by brake Link to comment Share on other sites More sharing options...
AF44 Posted July 30 Report Share Posted July 30 2 hours ago, brake said: Yes I found Klonopin to "enhance" everything lol. I'm not a full blown expert (although I did some research) but I think once you start combining things, it might get harder to pinpoint what's causing what plus the synergistic reactions could be completely unique in themselves. that’s awesome. Klonopin does indeed “enhance” everything. I’m laughing too hard to formulate a reply Link to comment Share on other sites More sharing options...
James3524 Posted July 31 Report Share Posted July 31 10 hours ago, AF44 said: Lamicatal and Klonopin together are a great combination in my opinion. I take both (along with some other meds) but it seems like the Lamictal “enhances” the effects of the Klonopin, or maybe vice versa. I wanted to be a pharmacy tech and I took a couple of classes at the community college (before I worked as a pharmacy cashier and realized I did NOT have the skill set or manic energy to keep up!) anyway, i learned there are 3 I think drug relationships and they all have names but I can’t remember. One is that one drug increases or decreases the effects of another. Another is that 2 drugs together increase the effects of each or decreases the effects is each. And one is that neither thing happens and they don’t have any effect on each other. Sorry, right now I’m having total DP/DR so I probably sound like a moron. But anyway maybe the Klonopin and Lamictal work together to increase the effects of one another? Levitiracetam (keppra) and Lamotrigine both potentiate each others effects. It is a very common combination for epilepsy. I’m not sure how clonzepam interacts with lamotrigine or keppra. May I ask how much has clonazepam decreased your DP/DR since you’ve started taking it? I have only tried it a few times and it works quite well. 2mg makes me feel drunk but I had DP/DR relief for days! Probably because it has a very long half-life. I’m kind of leaving it as a last resort option. I will try Lamotrigine, Keppra, neuromodulation (the most promising), and perampanel one a generic comes out. Thank you! Link to comment Share on other sites More sharing options...
brake Posted July 31 Report Share Posted July 31 (edited) I found klonopin to be effective in reducing all of my symptoms besides visual snow. I can't even imagine taking 2 mgs when 1 mg puts me to sleep lol. I found 0.75 mg to be the ideal dose. Visual snow seems to be a brutally stubborn disorder. I also had a reduction in DR/DP. I wish I didn't have the allergic reactions to Lamictal because I felt like it was reducing my HPPD although not drastically. Edited July 31 by brake Link to comment Share on other sites More sharing options...
James3524 Posted July 31 Report Share Posted July 31 (edited) 4 hours ago, brake said: I found klonopin to be effective in reducing all of my symptoms besides visual snow. I can't even imagine taking 2 mgs when 1 mg puts me to sleep lol. I found 0.75 mg to be the ideal dose. Visual snow seems to be a brutally stubborn disorder. I also had a reduction in DR/DP. I wish I didn't have the allergic reactions to Lamictal because I felt like it was reducing my HPPD although not drastically. Definitely. I’ve taken clonazepam a few times, usually at the higher end of dosages for someone without a tolerance. I barely remember what it’s like to take 1.5-2 mg, except that it feels like a “cleaner,” more euphoric form of alcohol. It made me too tipsy to even remember if a dose that high helped my symptoms when it was at peak levels in the blood stream. It’s interesting how clonazepam affects symptoms in different ways. For instance, 1 mg definitely slows down and thins out my visual snow, but it doesn’t do much for my palinopsia. This might be because HPPD/VSS is thought to be a network disorder, with different symptoms arising from various parts of a neurological network involved in sensory processing that is dysfunctional. I’ve heard speculation that visual snow may originate from the thalamus, whereas palinopsia, in some cases, is known to result from occipital lobe lesions. It’s possible that clonazepam reaches certain parts of the brain more effectively than others. Edited July 31 by James3524 Link to comment Share on other sites More sharing options...
Spartan Posted July 31 Author Report Share Posted July 31 Fascinating stuff everyone! I have been on quite a med combo I have sciatica (bulging discs in my lower back and neck ) from years of intense heavy weight training. So I have been on Oxycodone for the past 4 months or more. Built up a dependence and now gradually tapering off. Also klonopin for HPPD 1 to 1.5 mills daily. This definitely potently interacts with the Oxycodone (I know it can be dangerous in higher doses ) Now more recently lamotrogine up to 3 tabs per day on top of everything else. Today I noticed a severe side effect. Super sharp pain in my big toe. I think it's Gout Arthritis (apparently Lamotrogine can cause this ) Anyhow hopefully it will subside. Will bring it up with Doctor. Hope everyone is doing well! Cheers Link to comment Share on other sites More sharing options...
AF44 Posted July 31 Report Share Posted July 31 13 hours ago, James3524 said: Levitiracetam (keppra) and Lamotrigine both potentiate each others effects. It is a very common combination for epilepsy. I’m not sure how clonzepam interacts with lamotrigine or keppra. May I ask how much has clonazepam decreased your DP/DR since you’ve started taking it? I have only tried it a few times and it works quite well. 2mg makes me feel drunk but I had DP/DR relief for days! Probably because it has a very long half-life. I’m kind of leaving it as a last resort option. I will try Lamotrigine, Keppra, neuromodulation (the most promising), and perampanel one a generic comes out. Thank you! Klonopin basically made my DP/DR disappear. That was the best part, because to me DP/DR is worse than the visuals. It also cut my visuals down so much that when I first started on it, I had basically zero, except for a little bit of tracers for a couple of minutes after taking a pill. I have been on it every single day for about 13 or 14 (?) years. I now take 3 mg per day. The not-so-great thing is that obviously I’ve built up a tolerance so now I still have HPPD symptoms but nowhere near as bad as when I first got HPPD. The other not-so-great thing is that if I’m ever taken off of it, I know the withdrawals would be awful and that I’d probably just go back to having all of my HPPD symptoms, only a million times worse. So I guess it’s maybe a good idea to try it, just not long-term? Jay has a whaddyacallit, a routine for his? (Sorry, got a concussion 2 weeks ago, which not only caused bad effects but did WONDERS for my HPPD so I can’t concentrate too well right now) He has posted about it or you can ask him. Link to comment Share on other sites More sharing options...
AF44 Posted July 31 Report Share Posted July 31 22 hours ago, yarkadin said: AF44 you write Lamictal and Klonopin are a great combination and you are taking both, but you also write that you have total DP/DR... so it has no impact on DP/DR. Does this combination of drugs do anything for the visuals? Yeah sorry for the confusion, as you know, when I bashed my head it really messed me up, and I was having DP/DR that day. Sometimes I do have it. It’s hard to explain since I’ve been on it every day for the last 13 or 14 years. When I first got on it, it took the DP/DR completely away and basically all of my visuals. Over the years I have increased my dose and am now on 3 mg per day. After all this time, I guess I’ve built up a tolerance and I definitely have days where I have some symptoms, lots of symptoms, or pretty much no symptoms. If I went up to 4 mg per day (for example) I would probably have basically no symptoms. But for one, I don’t want a dose increase. 3 mg is fine enough. For two, I sincerely doubt I would even be allowed to go up. Plus I’m also on several other meds because I was diagnosed as bipolar when I was 33. The docs have thrown so many different meds and dosage increases and decreases over the years, I’m sure that had an effect on my HPPD. Right now I’m on Klonopin, lamotrigine, Zoloft, Buspar, Depakote and bupropion. I feel brain-dead most of the time and my memory is terrible. It’s so, so hard to explain. The only thing I know for sure is that Klonopin was and is a lifesaver for me and I feel like lamotrigine also makes a difference. Link to comment Share on other sites More sharing options...
brake Posted August 1 Report Share Posted August 1 (edited) On 7/30/2024 at 12:55 PM, AF44 said: Lamicatal and Klonopin together are a great combination in my opinion. I take both (along with some other meds) but it seems like the Lamictal “enhances” the effects of the Klonopin, or maybe vice versa. I wanted to be a pharmacy tech and I took a couple of classes at the community college (before I worked as a pharmacy cashier and realized I did NOT have the skill set or manic energy to keep up!) anyway, i learned there are 3 I think drug relationships and they all have names but I can’t remember. One is that one drug increases or decreases the effects of another. Another is that 2 drugs together increase the effects of each or decreases the effects is each. And one is that neither thing happens and they don’t have any effect on each other. Sorry, right now I’m having total DP/DR so I probably sound like a moron. But anyway maybe the Klonopin and Lamictal work together to increase the effects of one another? Dude it sounds like the disorders made you lose some self-esteem! You can do it bro! It made me lose some self-esteem as well and other people with HPPD also reported loss of self-esteem. But my doctor actually told me that I should become a researcher. This inspired me to know more about the brain and look for treatments and cures and I always liked research even before I had any disorders. I'm thinking about getting my masters in research but I don't know if I can handle working full time and supporting myself and getting a master's degree. I did manage to finish my bachelor's degree and get other certifications during onset of the disorder lol. I would imagine a master's degree would be more difficult though. Edited August 1 by brake Link to comment Share on other sites More sharing options...
yarkadin Posted August 1 Report Share Posted August 1 (edited) Klonopin, lamotrigine, Zoloft, Buspar, Depakote and bupropion all together... that is wild, my man.... I've been living with HPPD for over two decades without any medication. I feel I can live with it for another two decades, and more, without meds. My HPPD is not mild either... I'm just used to it, as somewhat bizarre as it is for me to write that, even looking at that sentence now, haha. I am very carefully reading what everyone is writing in these forums and it's piqued a lot of my curiosity but I'm still not convinced to go down the road of the pharmaceutical companies... we all seem to be running on side effects of medications intended for other purposes. There is no concentrated effort to cure this thing. Having said that Klonopin in the last few months of me taking it again calms me a bit and has no harmful effect I can tell as I only take it once or twice a week now on weekends. I didn't see any difference in palinopsia or visual snow... I don't know, maybe 5% when I took 1mg? It's within the range of error, let's say, not "statistically significant", haha. The visual snow also is reduced when I don't look at the computer monitor or bright light sources for long periods. Edited August 1 by yarkadin Link to comment Share on other sites More sharing options...
Spartan Posted August 1 Author Report Share Posted August 1 (edited) 21 hours ago, Spartan said: Fascinating stuff everyone! I have been on quite a med combo I have sciatica (bulging discs in my lower back and neck ) from years of intense heavy weight training. So I have been on Oxycodone for the past 4 months or more. Built up a dependence and now gradually tapering off. Also klonopin for HPPD 1 to 1.5 mills daily. This definitely potently interacts with the Oxycodone (I know it can be dangerous in higher doses ) Now more recently lamotrogine up to 3 tabs per day on top of everything else. Today I noticed a severe side effect. Super sharp pain in my big toe. I think it's Gout Arthritis (apparently Lamotrogine can cause this ) Anyhow hopefully it will subside. Will bring it up with Doctor. Hope everyone is doing well! Cheers Actually my acing toe seems to come and go.. likley it's not from Lamotrogine, just tripping LOL will get it sorted Edited August 1 by Spartan Link to comment Share on other sites More sharing options...
James3524 Posted August 2 Report Share Posted August 2 (edited) On 7/31/2024 at 12:48 PM, AF44 said: Klonopin basically made my DP/DR disappear. That was the best part, because to me DP/DR is worse than the visuals. It also cut my visuals down so much that when I first started on it, I had basically zero, except for a little bit of tracers for a couple of minutes after taking a pill. I have been on it every single day for about 13 or 14 (?) years. I now take 3 mg per day. The not-so-great thing is that obviously I’ve built up a tolerance so now I still have HPPD symptoms but nowhere near as bad as when I first got HPPD. The other not-so-great thing is that if I’m ever taken off of it, I know the withdrawals would be awful and that I’d probably just go back to having all of my HPPD symptoms, only a million times worse. So I guess it’s maybe a good idea to try it, just not long-term? Jay has a whaddyacallit, a routine for his? (Sorry, got a concussion 2 weeks ago, which not only caused bad effects but did WONDERS for my HPPD so I can’t concentrate too well right now) He has posted about it or you can ask him. I'm leaving klonopin as a last resort, but I don’t think I will need it. However, a higher dose of K gives me relief for days, so I would probably do a few days on/off like @Jay1 does. I have a lot of hope for repetitive transcranial magnetic stimulation (rTMS), though. I think we are much closer to safe, effective, and long-term treatment then many think. The sister condition of HPPD, visual snow syndrome, presents identically to many HPPD cases, and likely has the same etiology, and can be developed without any drug use. An rTMS study for treating visual snow syndrome should be published from a university in Colorado in September, another from of brain stimulation (tACS) is being studied in Switzerland and that should be published before the end of this year, and there is a clinic in Poland using a transcranial pulse stimulation (TPS) for HPPD and has had a ton of success (anecdotally). I will write about how magnetic brain stimulation could possibly significantly relieve or even completely reverse HPPD/VSS symptoms, but right now it is 4:37AM for me and I am rapidly fading and have been dealing with a lot of brain fog, but i will make a post about it in a few days! Here is an AI generated summary of some of the notes I took when researching the theorized pathophysiology of HPPD/VSS. Most of the theory is credited to Dr. Henry David Abraham, and some of the thalamacortical dysrhythmia + alpha wave ideas are recent developments. The current understanding of how Hallucinogen Persisting Perception Disorder (HPPD) and Visual Snow Syndrome (VSS) occur involves several key elements of brain function: 1. **GABAergic Interneurons**: These are specialized nerve cells that use the neurotransmitter GABA to inhibit or regulate other neurons' activity. In HPPD and VSS, the parvalbumin-expressing GABAergic interneurons, which also have serotonin 2A receptors, are believed to become dysfunctional or damaged. 2. **Serotonin 2A Receptors**: These receptors play a crucial role in modulating brain activity and sensory perception. Disruption in these receptors can affect how sensory information is processed. 3. **Thalamic Dysrhythmia**: The thalamus is a brain region crucial for processing and relaying sensory information. Dysfunction in the thalamus can lead to irregular brain rhythms or “dysrhythmia,” affecting how sensory signals are integrated and perceived. 4. **Alpha Wave Interference**: In a normally functioning brain, alpha waves (associated with relaxation and calm) help regulate sensory input and perception. Dysfunction in the above systems can disrupt these alpha waves, leading to the persistent visual disturbances and altered perceptions characteristic of HPPD and VSS. In summary, the symptoms of HPPD and VSS are thought to arise from a combination of damaged inhibitory neurons, disrupted serotonin signaling, and irregular brain rhythms in the thalamus that interfere with normal alpha wave patterns, ultimately leading to abnormal sensory experiences. Posting these here so I can come back for them later... https://onlinelibrary.wiley.com/doi/10.1002/ana.26745 https://www.sciencedirect.com/science/article/abs/pii/S0967586815006530 https://academic.oup.com/braincomms/article/4/1/fcab296/6469896 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8987195/ https://www.brainstimjrnl.com/article/S1935-861X(23)01980-0/fulltext https://academic.oup.com/braincomms/article/4/4/fcac164/6614740 https://www.sciencedirect.com/science/article/pii/S2772632023000338#:~:text=One of the main mechanisms,complexes with 5-HT2 receptors. https://en.wikipedia.org/wiki/Excitotoxicity https://www.nature.com/articles/s41386-021-01180-6#:~:text=Thalamocortical dysrhythmia (TCD) has been suggested as a,dysfunctions [ 9%2C 10%2C 11%2C 12%2C 13 ]. https://www.visualsnowinitiative.org/research/visual-snow-syndrome-treatment-study-tacs-schankin-klein-vsi/ https://www.visualsnowinitiative.org/interview/vsi-update-current-ongoing-transcranial-magnetic-stimulation-research-and-insights-by-dr-victoria-pelak/ https://en.wikipedia.org/wiki/Transcranial_magnetic_stimulation https://soterixmedical.com/research/tps https://en.wikipedia.org/wiki/Transcranial_direct-current_stimulation Edited August 2 by James3524 Link to comment Share on other sites More sharing options...
AF44 Posted August 2 Report Share Posted August 2 9 hours ago, James3524 said: I'm leaving klonopin as a last resort, but I don’t think I will need it. However, a higher dose of K gives me relief for days, so I would probably do a few days on/off like @Jay1 does. I have a lot of hope for repetitive transcranial magnetic stimulation (rTMS), though. I think we are much closer to safe, effective, and long-term treatment then many think. The sister condition of HPPD, visual snow syndrome, presents identically to many HPPD cases, and likely has the same etiology, and can be developed without any drug use. An rTMS study for treating visual snow syndrome should be published from a university in Colorado in September, another from of brain stimulation (tACS) is being studied in Switzerland and that should be published before the end of this year, and there is a clinic in Poland using a transcranial pulse stimulation (TPS) for HPPD and has had a ton of success (anecdotally). I will write about how magnetic brain stimulation could possibly significantly relieve or even completely reverse HPPD/VSS symptoms, but right now it is 4:37AM for me and I am rapidly fading and have been dealing with a lot of brain fog, but i will make a post about it in a few days! Here is an AI generated summary of some of the notes I took when researching the theorized pathophysiology of HPPD/VSS. Most of the theory is credited to Dr. Henry David Abraham, and some of the thalamacortical dysrhythmia + alpha wave ideas are recent developments. The current understanding of how Hallucinogen Persisting Perception Disorder (HPPD) and Visual Snow Syndrome (VSS) occur involves several key elements of brain function: 1. **GABAergic Interneurons**: These are specialized nerve cells that use the neurotransmitter GABA to inhibit or regulate other neurons' activity. In HPPD and VSS, the parvalbumin-expressing GABAergic interneurons, which also have serotonin 2A receptors, are believed to become dysfunctional or damaged. 2. **Serotonin 2A Receptors**: These receptors play a crucial role in modulating brain activity and sensory perception. Disruption in these receptors can affect how sensory information is processed. 3. **Thalamic Dysrhythmia**: The thalamus is a brain region crucial for processing and relaying sensory information. Dysfunction in the thalamus can lead to irregular brain rhythms or “dysrhythmia,” affecting how sensory signals are integrated and perceived. 4. **Alpha Wave Interference**: In a normally functioning brain, alpha waves (associated with relaxation and calm) help regulate sensory input and perception. Dysfunction in the above systems can disrupt these alpha waves, leading to the persistent visual disturbances and altered perceptions characteristic of HPPD and VSS. In summary, the symptoms of HPPD and VSS are thought to arise from a combination of damaged inhibitory neurons, disrupted serotonin signaling, and irregular brain rhythms in the thalamus that interfere with normal alpha wave patterns, ultimately leading to abnormal sensory experiences. Posting these here so I can come back for them later... https://onlinelibrary.wiley.com/doi/10.1002/ana.26745 https://www.sciencedirect.com/science/article/abs/pii/S0967586815006530 https://academic.oup.com/braincomms/article/4/1/fcab296/6469896 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8987195/ https://www.brainstimjrnl.com/article/S1935-861X(23)01980-0/fulltext https://academic.oup.com/braincomms/article/4/4/fcac164/6614740 https://www.sciencedirect.com/science/article/pii/S2772632023000338#:~:text=One of the main mechanisms,complexes with 5-HT2 receptors. https://en.wikipedia.org/wiki/Excitotoxicity https://www.nature.com/articles/s41386-021-01180-6#:~:text=Thalamocortical dysrhythmia (TCD) has been suggested as a,dysfunctions [ 9%2C 10%2C 11%2C 12%2C 13 ]. https://www.visualsnowinitiative.org/research/visual-snow-syndrome-treatment-study-tacs-schankin-klein-vsi/ https://www.visualsnowinitiative.org/interview/vsi-update-current-ongoing-transcranial-magnetic-stimulation-research-and-insights-by-dr-victoria-pelak/ https://en.wikipedia.org/wiki/Transcranial_magnetic_stimulation https://soterixmedical.com/research/tps https://en.wikipedia.org/wiki/Transcranial_direct-current_stimulation Wow! Well put, I actually understood it for the most part! Most of the time I get completely lost on all of the scientific explanations on here, which makes me feel kind of dumb. Haha, I get lost pretty easily on everything though, even what I’ve had for dinner last night! Link to comment Share on other sites More sharing options...
AmitV Posted August 2 Report Share Posted August 2 17 minutes ago, AF44 said: Wow! Well put, I actually understood it for the most part! Most of the time I get completely lost on all of the scientific explanations on here, which makes me feel kind of dumb. Haha, I get lost pretty easily on everything though, even what I’ve had for dinner last night! I did the TPJ protocol for 10 sessions, I had zero improvement. Link to comment Share on other sites More sharing options...
James3524 Posted August 3 Report Share Posted August 3 6 hours ago, AmitV said: I did the TPJ protocol for 10 sessions, I had zero improvement. What are your visual and non-visual symptoms? Link to comment Share on other sites More sharing options...
AF44 Posted August 4 Report Share Posted August 4 On 7/31/2024 at 9:02 PM, brake said: Dude it sounds like the disorders made you lose some self-esteem! You can do it bro! It made me lose some self-esteem as well and other people with HPPD also reported loss of self-esteem. But my doctor actually told me that I should become a researcher. This inspired me to know more about the brain and look for treatments and cures and I always liked research even before I had any disorders. I'm thinking about getting my masters in research but I don't know if I can handle working full time and supporting myself and getting a master's degree. I did manage to finish my bachelor's degree and get other certifications during onset of the disorder lol. I would imagine a master's degree would be more difficult though. Hehe thanks! I’m a woman btw lol but I don’t mind being called “bro,” my kids call me that all the time I think you and I have something in common! Before I got HPPD I was sharp as a tack and extremely interested in mental disorders and psychology. I too like doing research! My younger daughter is a senior in college and I have helped her with her homework, basically researching things for her. She’s on a full ride vb scholarship and extremely busy. She also works two jobs. I actually like it when she asks me to help with her homework, she doesn’t ask very often but I’m very interested in learning about different things. I think it’s awesome that you were able to get a Bachelor’s degree and certifications, and are able to work full time! There is no way I could’ve done any of that when I got HPPD. I believe in you that you can get a Master’s degree! I guess it might take awhile, but you can do it! I was able to work part and full-time jobs once my HPPD “settled” a bit. I also took classes at the community college a few years ago and had a 4.0 GPA. I just kept changing my mind on what career I wanted. Now at 45 (and on a bazillion meds) I literally can’t think straight, my memory is so bad it’s downright frightening, and I tire very easily. I receive SSDI for my “Bipolar Disorder” (I keep throwing that out because I honestly don’t believe I have it, it was just like, an easy explanation they came up with. I do suffer from depression, general anxiety disorder, Borderline Personality disorder-which I think is where the docs got tangled up, because Borderline mimics Bipolar-and PTSD.) Oh yeah…and HPPD Which is probably my main issue and makes everything else 10 times worse! I’m very lucky I have a supportive husband who has a good job and is the breadwinner. A lot of people don’t have that kind of support. I don’t know what I would do without him. Probably be penniless and homeless lol. Then I crashed the back of my head on the edge of my coffee table when I slipped in a puddle of water, I’ve probably mentioned THAT a million times as well! And that sure didn’t help my HPPD one bit. Now I have a flare and I had terrible concussion symptoms for a week after, and I am finding it harder and harder to concentrate. I have an appointment with my meds prescriber tomorrow. Idk what she can do. I can’t sleep properly, I have something called a “anxiety-induced chemical surge” which I just discovered a couple of days ago! I will get this feeling of panic and “adrenaline” inside my body, but it’s not really adrenaline, I can tell. It’s unbearable. I did some poking around online and found my answer! So I will bring that up to my meds prescriber tomorrow. Right now I just don’t know what to do, I’m pretty miserable. I got so off-topic I don’t even remember what the topic was! Holy moly! Sorry for this weird, boring ramble Link to comment Share on other sites More sharing options...
AF44 Posted August 4 Report Share Posted August 4 On 7/31/2024 at 9:16 PM, yarkadin said: Klonopin, lamotrigine, Zoloft, Buspar, Depakote and bupropion all together... that is wild, my man.... I've been living with HPPD for over two decades without any medication. I feel I can live with it for another two decades, and more, without meds. My HPPD is not mild either... I'm just used to it, as somewhat bizarre as it is for me to write that, even looking at that sentence now, haha. I am very carefully reading what everyone is writing in these forums and it's piqued a lot of my curiosity but I'm still not convinced to go down the road of the pharmaceutical companies... we all seem to be running on side effects of medications intended for other purposes. There is no concentrated effort to cure this thing. Having said that Klonopin in the last few months of me taking it again calms me a bit and has no harmful effect I can tell as I only take it once or twice a week now on weekends. I didn't see any difference in palinopsia or visual snow... I don't know, maybe 5% when I took 1mg? It's within the range of error, let's say, not "statistically significant", haha. The visual snow also is reduced when I don't look at the computer monitor or bright light sources for long periods. In a way I wish I had never taken any meds. The side effects are terrible, the withdrawal effects are terrible…getting on Klonopin felt like a MIRACLE. It took away literally 99% of my symptoms. After that, because of my bipolar diagnosis, I was put on lamotrigine and Zoloft. I loved the lamotrigine because it helped my depression so much. Not sure if the Zoloft did anything because I was started out on only 25 mg. Then…sign. Every medication they tried on me. Over all these years I have been given Lithium, Trazadone, Saphris, Seroquel, Ativan, Xanax, Prazosin, trileptal, and probably other meds they’ve tried on me that I’m forgetting. I just trusted the prescribers because they were the “experts” but now I’m over that. Now I’m on my “cocktail” that is tweaked every so often every time I get an issue like panic attacks or depression. So yeah, I guess I should just say, beware and be cautious before trying a medication. Link to comment Share on other sites More sharing options...
yarkadin Posted August 4 Report Share Posted August 4 (edited) AF44: this website does not provide information on gender or sex info, so I apologize for calling you "man", no less "my man"! haha Seems you are okay with "bro" though. I will keep that in mind, haha. I have no right to tell anyone whether they should or should not take any prescriptions, or what prescriptions they should take, no more than most doctors have a right (most are clueless when it comes to HPPD). Everyone has remarkably different tolerances to drugs and some do need drugs more than others. However, in respect to HPPD alone, I will tell you this: given that some people, like myself, have made the conscious decision to NOT take any medication and can still function with this disease leads me to believe others CAN too. I am very skeptical of the pharmaceutical industry and Big Pharma intruding into peoples lives and planting seeds of necessity where there should be none, and I am even more skeptical of doctors who get paid and sponsored by these corporations peddling them to everyone they come in contact with. I have encountered more than my share of "pill pusher" doctors who are too lazy to address problems in any direct and difficult way and instead take the easy way out with pills. Back in the early 00s I had one who told me I should take an SSRI "forever" despite it leading me down the path of absolutely agony. The best decision I ever made in my life (after my worst decision of taking LSD) was ignoring this fucking scumbag piece of shit creep's advice (did I mention I didn't have a good opinion of this psychiatrist? lol). So I would just say to be careful. For thousands of years humans have functioned without pills from big drug companies in the face of life's myriad uncertainties! Society has irrevocably changed and living has become far more stressful in some areas while less stressful in others. It's easy to wonder how people can function normally in society at all and why everyone isn't depressed and reeling with anxiety, but everyone seems to be "wired" differently. I know anxiety and depression is genetic to my family, but I won't allow a single doctor to make any decision in my life to make me dependent on him and the people supplying his paycheck... it must be a choice I make only AFTER exhaustive levels of study and research... and even then thinking it over 100 times granted I'm not capsizing and have that privilege. Edited August 4 by yarkadin Link to comment Share on other sites More sharing options...
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