Tolerance

[Hall89]

So, got on Lamotrigine about 2 months after my onset and it saved my life, because it took away the non-visual symptoms, hallucinations, tunnel vision and stabilized the others some. The past two months these have started to surface again and i see my life coming to an end. I'm in the process of increasing from 200 mg to 300 mg in hope of buying me some more time, i also take some benzo to temporarily help me. 

 

Anyways, since i responded so well to Lamotrigine, do you guys believe that i will do it to Keppra as well? I'm dead serious when i say that i will not live a life with full blown HPPD, every day was torture with it, especially because of the out of control 10/10 anxiety.

[Hindy112]

I would stop all drugs. Lamotrigine made me suicidal, so I would suggest not taking it. Anxiety is pretty normal nowadays. Most likely it is your own fault taking drugs, so HPPD is the warning that your brain can not handle them. 

 

[brake]

17 hours ago, Hall89 said:

So, got on Lamotrigine about 2 months after my onset and it saved my life, because it took away the non-visual symptoms, hallucinations, tunnel vision and stabilized the others some. The past two months these have started to surface again and i see my life coming to an end. I'm in the process of increasing from 200 mg to 300 mg in hope of buying me some more time, i also take some benzo to temporarily help me. 

 

Anyways, since i responded so well to Lamotrigine, do you guys believe that i will do it to Keppra as well? I'm dead serious when i say that i will not live a life with full blown HPPD, every day was torture with it, especially because of the out of control 10/10 anxiety.

No idea because I had serious side effects from Gabapentin but I'm fine on Dekapote. I don't want to try Lamictal because I heard there are chances of a serious rash as well.

[jh875]

You probably have developed about all the tolerance to those medications that you will get by now if you have been taking them for a month or two. I don't know which drugs or amounts would work best so I can't help you with that.

There are crisis lines you can call if you are suicidal or other people to talk to.

[Hall89]

On 5/4/2023 at 3:02 PM, Hindy112 said:

I would stop all drugs. Lamotrigine made me suicidal, so I would suggest not taking it. Anxiety is pretty normal nowadays. Most likely it is your own fault taking drugs, so HPPD is the warning that your brain can not handle them. 

 

What makes you think i take any drugs? I haven't even touched alcohol since getting this, and before that i only tried cannabis a few times, which is what gave me HPPD. And quit Lamotrigine? Did you even read the thread? It's the only thing that's kept me alive because of the symptoms that it took away.

[Hall89]

19 hours ago, brake said:

No idea because I had serious side effects from Gabapentin but I'm fine on Dekapote. I don't want to try Lamictal because I heard there are chances of a serious rash as well.

The chances of getting that is lower than 1%.

[Hindy112]

I do not see how it safed your life. HPPD is not life threatining. I see lamotrigine and benzos as a drug. I would not recommend it on a regular basis. I would suggest having some medicaments in the back pocket, for real „bad times“. 

[Hindy112]

You should call a psychiatrist and ask him what to do. But this is not the right place to say that you rather dont live than having HPPD. We all have it okay? And we are all living with it. Seeing you say stuff like this is not motivational and you could just not say it. I have HPPD and it is okay. 

[Jay1]

Hindy, while I understand what you mean, I think it's important for people to say if they are feeling suicidal, so that we can try to help as much as possible. 

Hall, as you can see by the replies re: meds... Everyone seems to be very different, so best to chat to your doctor and, if you do decide to add another med, taper up very slowly.

Keep on fighting, all. Better times will come. 

[Hindy112]

I think I already stated at some time before, that I have a problem with the „if HPPD doesnt go away, I cant be happy“ thought. HPPD is a visual symptom, it makes no sense that you cant deal with anxiety and depression seperated. And these are the feelings that matter. I do not say that HPPD doesnt make it harder somehow, but not impossible. 
 

but you re right, he can state whatever he wants, but even in that situation you should be aware of the words and the influence they might have on others

 

have a nice day 

[Hindy112]

especially because of the from time to time rather young audience

[Hall89]

21 hours ago, Hindy112 said:

I do not see how it safed your life. HPPD is not life threatining. I see lamotrigine and benzos as a drug. I would not recommend it on a regular basis. I would suggest having some medicaments in the back pocket, for real „bad times“. 

It saved my life because it kept the dpdr, head pressure, decreased cognition, visual hallucinations and tunnel vision away, also decreased the vs some. And yes, to me it is life threatening, because i rather be dead than living like a half blind vegetable with uncontrollable crippling anxiety every day, that's outright torture. So this diagnosis is for me as bad as an untreatable cancer diagnosis, and right now i don't know how long i have left until it's all back, and then there's benzos and alcohol until the body give out.

[Hall89]

21 hours ago, Hindy112 said:

I have HPPD and it is okay. 

May i ask what symptoms you have?

[Hall89]

4 hours ago, Hindy112 said:

HPPD is a visual symptom

Sadly full blown HPPD is anythinh but just a shitty vision, it's the non-visual symptoms that's the worst, like dpdr, crippling anxiety, head pressure and brainfog. When Lamo took those away and i "only" had the static, halos, starbursts, palinopsia, floaters, bfep, ghosting and tinnitus i did ok, but living with the others on top of that is no life, it's a daily suffering that's hard to put in words.

[Hall89]

8 hours ago, Jay1 said:

Hall, as you can see by the replies re: meds... Everyone seems to be very different, so best to chat to your doctor and, if you do decide to add another med, taper up very slowly.

Keep on fighting, all. Better times will come. 

Yeah! I increased the lano dosage by 50% around 5 days ago after consultation with my doc, it feels like it's having a small effect,so hopefully it will go bsck to how it was in the coming days, but the problem is that the body will build up a tolerance to that as well, so no matter how you look at it,my life is coming to an end. My last try will be going on 2 mg of Clonazepam at a daily basis and see if that can cause some miracle. But i've literally lost EVERYTHING in my life to this, the love of my life and fisnceé for 6 years, our dogs, job, interests, mental health and i'm now living in a room at my moms which is kind of sad since i'm 33 years old. God this world is unfair, how a few hits of weed can lay waste to an entire life is crazy.

[Hindy112]

Can you give close information, on how this happened? How was one weed trip enough for you  to loose all that? And why do you think you cant go to a job and live in a apartement or something? Like okay, it is not nice having anxiety. But not trying it, why dont you try it? Are you scared how others will treat you? 
 

In the end, if you look around, you see that everyone has his package to carry, we with HPPD may might have some more package, but almost everyone has a somehow „hard“ life. Alone that you have the ability to go to a doctor or live with your parents is something not many could do. So please dont think, that everyone else lives a normal life and you re the only one that has a bad one. It is not like that.

Can you please tell your story? As clear as possible. 

[Hall89]

17 hours ago, Hindy112 said:

Can you give close information, on how this happened? How was one weed trip enough for you  to loose all that? And why do you think you cant go to a job and live in a apartement or something? Like okay, it is not nice having anxiety. But not trying it, why dont you try it? Are you scared how others will treat you? 
 

In the end, if you look around, you see that everyone has his package to carry, we with HPPD may might have some more package, but almost everyone has a somehow „hard“ life. Alone that you have the ability to go to a doctor or live with your parents is something not many could do. So please dont think, that everyone else lives a normal life and you re the only one that has a bad one. It is not like that.

Can you please tell your story? As clear as possible. 

Sure! I had been struggling with chronic pain for a few years and insomnia a year before the HPPD, so i ended up trying to self medicate with cannabis (homegrown royal cheese strain). I got a but tired, went to bed and the day after i woke up with full blown HPPD, that is:

 

* Strong head pressure.

* DPDR.

* Greatly affected cognition/brainfog.

* Regular panic attacks and 8-10 anxiety all the time.

* Extremely vivid dreams, every night was like a horror movie.

* Tinnitus (2 weeks after onset)

* Regularly seeing visual pseudohallucinations (around 4-5 days after onset)

* All the typical VSS visuals, that is, real bad vs, halos, starburats, palinopsia, floaters, bfep and ghosting.

 

First three months i was bedridden 90% of the time, then i was prescribed Lamotrigine by a psychiatrist and it took away the hallucinations and non-visual symptoms except the tinnitus, so i became functional again. And no, i could barely eat with all those symptoms, so if they were to come back i'm done, because that's no worthy life. Yes, most people have problems, but in the vast majority they PALE compared to full blown HPPD, they don't even come close. So as said, i might as well had gotten an untreatable cancer diagnosis, the outcome will be the same if i can't continue to treat this.

 

PS, i had never done any other recreational drug than alcohol and weed prior to that

Edited May 7 by Hall89

[Hindy112]

A lot of these problems can be solved. Insomnia and pain could be psychosomatic symptoms. Most likely I think people who develop HPPD have mental problems before that. So please do not project every problem you have on the visual disturbances and perception changes coming from HPPD. It worsens it by a lot, I do not want to deny you that.

How much cannabis did you consume, you re 33 years old right? So that is a pretty high age, good that you state that here. 
 

Are you sure, that chronic pain and insomnia were the only things you had before HPPD? You do not have to state that here. But it is very important to be honest with oneself. 
 

I can imagine living in that circumstances now is pretty frustrating, but I can assure you, in 1-2 years, life will look different. You will get used to your perception. But you can not force it to be better, you can not force it to go away.

Since lamotrigine is making suicidal thoughts in a lot of cases and you are having some, I would strongly suggest you to cut that.

[Hindy112]

Most likely you needed a change in life. Sadly the drug propaganda is so far now, that you were convinced you could find it in drugs. 

That is life, it is tough.

 

[brake]

On 5/5/2023 at 3:43 PM, Hall89 said:

The chances of getting that is lower than 1%.

Dude a small percentage get serious side effects from Gabapentin. Also a small percentage get HPPD and visual snow, I don't want to try my luck again. With Gabapentin and Buspirone, I had trouble breathing, hives and rashes. Gabapentin also gave me partial ED. Which is very unfortunate because I felt like it was stabilizing my brain and making me feel better. What's interesting to me is that although benzos and anti-seizure medications do help a lot, I feel like they aren't specifically targeted for HPPD and/or visual snow. I am that 1%!!!! lol

Edited May 7 by brake
side effects update

[Hindy112]

But insomnia also comes from a different illness maybe? Maybe you have food allergies or consume stuff that has a bad impact on your body. Maybe you do not eat that well, do not move enough. Avoiding sugar could be helpful. Avoiding cigarettes and caffeine, also found in dark chocolate. Consuming stuff with bad impact can also be porn or other internet stuff. Being in front of a computer all day really has a negative impact. Staying active will help life quality to stay up.

[Hindy112]

1 minute ago, brake said:

Dude a small percentage get serious side effects from Gabapentin. Also a small percentage get HPPD and visual snow, I don't want to try my luck again. With Gabapentin and Buspirone, I had trouble breathing, hives and rashes. What's interesting to me is that although benzos and anti-seizure medications do help a lot, I feel like they aren't specifically targeted for HPPD and/or visual snow. I am that 1%!!!! lol

I think with HPPD the percentage for getting side effects goes up by a lot.

[brake]

1 hour ago, Hindy112 said:

I think with HPPD the percentage for getting side effects goes up by a lot.

Why do you think so? Is it because we are more sensitive?

[Hindy112]

Yes. * I dont know.
 

But I can only speak for myself and it can have different reasons for sure. I do not think HPPD supports not having the side effects, lets say it like that xd

but I am a pretty sensitive person anyways. 

Edited May 7 by Hindy112

[Hindy112]

@Hall89 maybe you like to participate in some surveys, you can find them here in the forum, since I think it is very important people get to know about this. Especially with the upcoming legalization of cannabis in many countries. In germany we are also planning that, people dont seem to believe the obvios risks and already official politicans are talking nonsense, cannabis as a healing or something (there is no advanced studies on that, only on chronic pain, which doesnt leave out the side effects of course). 

I think with HPPD a lot of people seem to hide, I think you should accept yourself having HPPD and go on, that also means, giving others advice on the negative effects of drugs. Maybe some users get prevented from developing HPPD if they know beforehand that that could happen.