Advice for starting Lamotragine

[Rhino]

Hi all, I'm a 7 year HPPD sufferer who has had a recent and severe flare up of symptoms. I am going to start taking Lamotragine but I am conscious that the psychiatrist who is prescribing me it didn't know a huge amount about HPPD at the beginning of our hour long meeting.

Up until the recent flare up, I have been very sensitive to small amounts of alcohol, 2nd hand smoke and have been unmedicated for the past 5 years.

At the moment my tolerance is even less than what it was.

The psychiatrist was very understanding in regards to this sensitivity and the overall cortical disinhibition.

I am hopeful that the Lamotragine will help with the burning sensations I get in my legs based on the advice of a different neurologist I saw a few months ago.

Just wondering if anyone could advise on how progressively they would build up a dosage for a first timer?

[brake]

54 minutes ago, Rhino said:

Hi all, I'm a 7 year HPPD sufferer who has had a recent and severe flare up of symptoms. I am going to start taking Lamotragine but I am conscious that the psychiatrist who is prescribing me it didn't know a huge amount about HPPD at the beginning of our hour long meeting.

Up until the recent flare up, I have been very sensitive to small amounts of alcohol, 2nd hand smoke and have been unmedicated for the past 5 years.

At the moment my tolerance is even less than what it was.

The psychiatrist was very understanding in regards to this sensitivity and the overall cortical disinhibition.

I am hopeful that the Lamotragine will help with the burning sensations I get in my legs based on the advice of a different neurologist I saw a few months ago.

Just wondering if anyone could advise on how progressively they would build up a dosage for a first timer?

What my doctors usually do with me is they start me off with a small dose (regardless of the medication) and we see how it goes with the side effects and allergies. Once it's been proven to be safe for me and I like the medication then we increase the dose. Lamictal in my opinion is a "good one" but unfortunately I had some side effects and allergies to it and I had to stop. The side effects and allergies were not as dramatic and intense as Gabapentin though...

[Rhino]

 

21 hours ago, brake said:

What my doctors usually do with me is they start me off with a small dose (regardless of the medication) and we see how it goes with the side effects and allergies. Once it's been proven to be safe for me and I like the medication then we increase the dose. Lamictal in my opinion is a "good one" but unfortunately I had some side effects and allergies to it and I had to stop. The side effects and allergies were not as dramatic and intense as Gabapentin though...

Thanks a lot for the advice.

 

I have been completely illicit drug free for 7 years, but because I have had such sensitivity to minute amounts of things, it's like ever since the HPPD started there hasn't been a time I have taken a medication or accidentally been exposed to things and felt better for it. Other than like really non psychoactive things like antibiotics, paracetamol, ibuprofen etc. I'm just hoping that of the things to take, that the Lamictal feels like it works a bit more behind the scenes and doesn't cause more problems than it solves if that makes sense. But I suppose there is only one way to find out.

 

Roughly how small would you go for a starting dose? 5mg , 10mg , 25mg ?

[boyo4202]

38 minutes ago, Rhino said:

 

Thanks a lot for the advice.

 

I have been completely illicit drug free for 7 years, but because I have had such sensitivity to minute amounts of things, it's like ever since the HPPD started there hasn't been a time I have taken a medication or accidentally been exposed to things and felt better for it. Other than like really non psychoactive things like antibiotics, paracetamol, ibuprofen etc. I'm just hoping that of the things to take, that the Lamictal feels like it works a bit more behind the scenes and doesn't cause more problems than it solves if that makes sense. But I suppose there is only one way to find out.

 

Roughly how small would you go for a starting dose? 5mg , 10mg , 25mg ?

It really depends, I’d take your doctor’s advice on the starting dose. 10 or 25mg sound reasonable, usually incrementing by 25mg every two weeks. The low starting dose isn’t so much about seeing how you will tolerate the drug and more about assessing whether you may develop SJS.

Once you get up to an actual effective dose (>100mg) I’d recommend avoiding taking it past 5pm as it gives me and many others insomnia.

[brake]

1 hour ago, Rhino said:

 

Thanks a lot for the advice.

 

I have been completely illicit drug free for 7 years, but because I have had such sensitivity to minute amounts of things, it's like ever since the HPPD started there hasn't been a time I have taken a medication or accidentally been exposed to things and felt better for it. Other than like really non psychoactive things like antibiotics, paracetamol, ibuprofen etc. I'm just hoping that of the things to take, that the Lamictal feels like it works a bit more behind the scenes and doesn't cause more problems than it solves if that makes sense. But I suppose there is only one way to find out.

 

Roughly how small would you go for a starting dose? 5mg , 10mg , 25mg ?

I don't remember. My doctor definitely gave me a small amount. Take your doctor's advice but remember the doctor isn't always right. One psychiatrist with 40 years of experience advised abilify for me and I took it and it didn't help at all and made my visuals worse. He said something about it working great for the prefrontal cortex lol.

Yeah dude we can be drug free for the rest of our lives and unfortunately it won't do much for some of us. But who knows what modern science will figure out eventually.

Edited December 28, 2024 by brake

[Rhino]

6 hours ago, boyo4202 said:

It really depends, I’d take your doctor’s advice on the starting dose. 10 or 25mg sound reasonable, usually incrementing by 25mg every two weeks. The low starting dose isn’t so much about seeing how you will tolerate the drug and more about assessing whether you may develop SJS.

Once you get up to an actual effective dose (>100mg) I’d recommend avoiding taking it past 5pm as it gives me and many others insomnia.

 

6 hours ago, brake said:

I don't remember. My doctor definitely gave me a small amount. Take your doctor's advice but remember the doctor isn't always right. One psychiatrist with 40 years of experience advised abilify for me and I took it and it didn't help at all and made my visuals worse. He said something about it working great for the prefrontal cortex lol.

Yeah dude we can be drug free for the rest of our lives and unfortunately it won't do much for some of us. But who knows what modern science will figure out eventually.

Cheers for the advice.

I am also quite nervous because I have periodically had what I believe is some kinda seizure activity in my sleep ever since this 2nd (current) bout of HPPD started. I wrote about this in more detail when I did an introduction the other day. And although the days leading up to whatever is happening during my sleep aren't the most pleasant, once I have had them, I get quite a lot of relief and gradual improvement following them and they act as a bit of a reset.

So it just feels like a bit of a roll of the dice as to how that side of things is going to be impacted because I'm a longstanding rawdogger.

But equally it may turn out to be overall beneficial as Lamotragine is also used for epilepsy.

Everything is very much up in the air at the minute and out of its normal rhythm. It just feels like it has been deteriorating and getting very easily triggered over the past 2 months it doesn't feel like it's going to recover of its own accord anytime soon.

[brake]

1 hour ago, Rhino said:

 

Cheers for the advice.

I am also quite nervous because I have periodically had what I believe is some kinda seizure activity in my sleep ever since this 2nd (current) bout of HPPD started. I wrote about this in more detail when I did an introduction the other day. And although the days leading up to whatever is happening during my sleep aren't the most pleasant, once I have had them, I get quite a lot of relief and gradual improvement following them and they act as a bit of a reset.

So it just feels like a bit of a roll of the dice as to how that side of things is going to be impacted because I'm a longstanding rawdogger.

But equally it may turn out to be overall beneficial as Lamotragine is also used for epilepsy.

Everything is very much up in the air at the minute and out of its normal rhythm. It just feels like it has been deteriorating and getting very easily triggered over the past 2 months it doesn't feel like it's going to recover of its own accord anytime soon.

Yeah exactly lamictal is also for epilepsy so you're hitting 2 birds with one stone. It's actually good for anxiety and depression as well and overall well-being.

Edited December 28, 2024 by brake

[Spartan]

Advice for taking Lamotrogine 

Generally taken : start at 25 mg and work your way up every 2nd of 3rd week 

I.e. 25mg. 50mg. 75mg 100mg 

Etc 

I'm currently sitting in 200mg daily 

My Dr wants me to get up to 250mg daily 

Most common side effects are nausea tho hopefully will stop once acclimate. 

Wish you all the best. 

[brake]

My doctor started me off with 25 milligrams once a day. My visuals seemed to be improving, my anxiety and depression seemed to be decreasing and I felt better overall and then after like a week or two I started getting allergies and side effects and I had to stop especially since gabapentin almost killed me lol. But it was also not a complete cure.

[Spartan]

16 hours ago, Spartan said:

Also you might want to be careful with your coordination lamotrogine can make you loose your balance quite easily especially while adapting. 

You also may feel a bit sedated on higher doses in the mornings though Likley splitting into morning and afternoon dosing times can counteract that l. 

[Spartan]

Also you might want to be careful with your coordination lamotrogine can make you loose your balance quite easily especially while adapting. 

 

Additionally you may feel a bit sedated on higher doses in the mornings though Likley splitting into morning and afternoon dosing times can counteract that

Edited December 29, 2024 by Spartan

[Rhino]

On 12/29/2024 at 2:49 PM, brake said:

My doctor started me off with 25 milligrams once a day. My visuals seemed to be improving, my anxiety and depression seemed to be decreasing and I felt better overall and then after like a week or two I started getting allergies and side effects and I had to stop especially since gabapentin almost killed me lol. But it was also not a complete cure.

 

On 12/29/2024 at 5:08 PM, Spartan said:

Also you might want to be careful with your coordination lamotrogine can make you loose your balance quite easily especially while adapting. 

 

Additionally you may feel a bit sedated on higher doses in the mornings though Likley splitting into morning and afternoon dosing times can counteract that

Although things have been carnage in terms of my symptoms at the moment. The silver lining to the cloud is that I have found a very qualified and thorough consultant psychiatrist who is even reading the various HPPD scientific reviews I have gifted him. I am also receiving home visits from what is called the crisis team every few days. And I am starting Lamotragine for the first time tomorrow.

 

Because of my overall sensitivities/ cortical disinhibition I am starting on 5mg for 5 days, then 7.5mg x 5days, then 10mg x 5 days and going from there.

The psychiatrist was joking that this is the smallest prescription he has ever written and it is equivalent to what a 4 year old epileptic child would take. The pharmacist was also very confused as to why a 30 year old man needs liquid Lamotragine of that dosage. 

But I'm hopeful that it works. Over the past few days I have even been shaking and convulsing which although I know is not epileptic, it's frustrating as it's a new bad symptom. And as annoying as this recent deterioration is, I am tentatively optimistic that Lamotragine fits the profile of alleviating a few problems in one.

[brake]

18 hours ago, Rhino said:

 

Although things have been carnage in terms of my symptoms at the moment. The silver lining to the cloud is that I have found a very qualified and thorough consultant psychiatrist who is even reading the various HPPD scientific reviews I have gifted him. I am also receiving home visits from what is called the crisis team every few days. And I am starting Lamotragine for the first time tomorrow.

 

Because of my overall sensitivities/ cortical disinhibition I am starting on 5mg for 5 days, then 7.5mg x 5days, then 10mg x 5 days and going from there.

The psychiatrist was joking that this is the smallest prescription he has ever written and it is equivalent to what a 4 year old epileptic child would take. The pharmacist was also very confused as to why a 30 year old man needs liquid Lamotragine of that dosage. 

But I'm hopeful that it works. Over the past few days I have even been shaking and convulsing which although I know is not epileptic, it's frustrating as it's a new bad symptom. And as annoying as this recent deterioration is, I am tentatively optimistic that Lamotragine fits the profile of alleviating a few problems in one.

Yes one of my psychiatrist used to joke around that I get underage doses but whatever works right? Lol and why overload yourself with chemicals for no reason.

 

I hope the shaking and convulsing passes for you. Thankfully that is not on my long laundry list of symptoms.

 

Now they are more conservative with the dosing because there is a lot of awareness of withdrawals, side effects and possible dementia nowadays. Whatever my HPPD and visual snow and anxiety and depression is that bad that I accept these risks. I seem to be tolerating these meds well but I don't tolerate every single med well.

 

I try to post every article and clinical trial study pertaining to visual snow and HPPD that I can find on this forum and so do others. So please pass all of these along to your doctors. You just have to do some searching. I'll try to compile one ultimate massive list lol.

Edited January 6 by brake

[Rhino]

On 1/6/2025 at 3:13 PM, brake said:

Yes one of my psychiatrist used to joke around that I get underage doses but whatever works right? Lol and why overload yourself with chemicals for no reason.

 

I hope the shaking and convulsing passes for you. Thankfully that is not on my long laundry list of symptoms.

 

Now they are more conservative with the dosing because there is a lot of awareness of withdrawals, side effects and possible dementia nowadays. Whatever my HPPD and visual snow and anxiety and depression is that bad that I accept these risks. I seem to be tolerating these meds well but I don't tolerate every single med well.

 

I try to post every article and clinical trial study pertaining to visual snow and HPPD that I can find on this forum and so do others. So please pass all of these along to your doctors. You just have to do some searching. I'll try to compile one ultimate massive list lol.

I have only had 2 doses/days of it. But the relief I have in regards to the burning sensations/ parasthesia was almost instant. I think when you have normalised something for years, it's a big relief when the pain is significantly reduced. I have a bit of a cold tingly sensation instead. But it's not painful, and I went to bed way way easier too.

 

To be fair to my psychiatrist he has been very proactive. I have seen him 3 times and given him a good 2-3 scientific articles each time. And when I have visited him a week later I noticed that he had kept them on his desk and gone away and done some homework in the meantime. 

 

He is also writing am email to Dominic Ffytche's Kings college email regarding me. So fingers crossed he responds.

 

I don't know how easy or otherwise it's going to be getting a proper diagnosis as such. The ICD-10 is used in the UK and the closest statement is very wishy washy and doesn't exactly scream Type 2 HPPD IMO.

 

ICD-10 code: F16. 7 Mental and behavioural disorders due to use of hallucinogens Residual and late-onset psychotic disorder.