DP/DR SUFFERERS! TOPOMAX!

[jbalsa2]

Hey guys!

Have some exciting news for all of you who suffer from depersonalization or derealization. I've been in in an inpatient care centre for a little while now to try out some various treatment options for my HPPD.

Currently I am titrating up on lamotrigine to try and help with visual snow, as well as buspar to treat some of the anxiety that has come with my HPPD as an alternative to benzodiazepines. 

But the most exciting thing is that my doc has started me on an anticonvulsant called topomax. About an hour after taking it I feel a slight stimulant effect, however my depersonalization and derealization is completely gone while I am on it. My thinking and mental state becomes tactful and present, with no brain fog. 

I'm on 25mg before supper time, and we'll be increasing dosage gradually, as well as adding a morning dosage. The effect I get off 25mg at supper time lasts for about 6-8 hours.

Just thought I would share this information with you guys, and hopefully it excites and helps you guys as much as it does me!

If any of you guys give it a go, please post here and let me know how your experience goes.

 

 

[olivier24445]

very interesting, please keep sharing !

I you find something that works with your visual snow , i'm very interested also

It's funny, because 20 years ago, when i was trying to figure out why i was feeling so weird, ( nothing about hppd existing at that time, and internet was brand new...) Well a neurologist diagnosed me "epileptic" after some electroencephalograms measures. 

He gave me Depakine.....at that time, i was so depressed by that news....Off course, i was not epileptic...at all...so for a long time i believed the guy was completely wrong...but it seems like hppd really goes with some kind of permanent over stimulation of the brain, without any seizures, off course.

Also, it might seem stupid to say, but after my mood recovered and adaptation (took a few years) , and i quit all kind of drugs and smoking...well, i became , believe me or not...much more intuitive and let's say it, intelligent...still to this day. Thanks to that overactivity, i became a really really hard workaholic and by then...kind of "rich"...I mean, I was just a regular guy before...bad at school, bad with lots of things in life. Nothing could tell i had any abilities to go that far....I don't know if it's the over-activated brain haha like a super-power, or because i found a second breath in recovering from that deadly trial...hard to tell. I'm really kind of hyperactive, i learn things really fast....it's always like a fast train in my head...

If you take it on the spiritual side, it's like some kind of extremely brutal buddhist awakening...I guess.

Believe me, now i know myself and accept myself as a whole package. And there is a lot to deal with.

Just it goes with a permanent change of mind and perception. And yes. Sometime it's still annoying.

I really wonder if it's a good idea to try to cure it. Maybe now that i'm all set in life, i don't need my super powers anymore lol

Edited April 28, 2018 by olivier24445

[Jagermeister]

That's sound amazing! Keep us informated!

I take .5 xana before sleep and have "normal thoughts" and plane process of cognitive behavior again, but I feel really tired. Does topomax make you feel a little bit tired? Bless!

[jbalsa2]

The doctor upped my dosage today, i'm on 25mg twice daily now, first thing in the morning and before supper, and it's the same thing every time I take it, DP/DR disappear and my norm train of thought comes back.

Visual snow is there, but it's almost like I don't even care that the visual snow is there because the topomax is actually curing the physiological/psychological side effects that the hppd brings. Where as normally the visual snow is a huge annoyance visually, while on the topomax, the visual snow is there and is just something I can look at and be perfectly okay with.

As the weeks go on we will be increasing the dosage of topomax. I self medicated with xanax to treat my HPPD for months, taking topomax is easily just as effective as xanax at treating the effects of HPPD, although I wouldn't take it before bed time as it is quite stimulating.

It increases the effectiveness of the GABA-A receptor group, just like xanax or any other benzodiazepine for that matter, which leads me to believe that that it's mechanism of action in making my HPPD symptoms so much better.

[jbalsa2]

I will add, the first time you use topomax, you might feel a little bit overwhelmed by its effects to the point that it feels like it's making your HPPD worse, this happened to me, this effect wears off after about 20 minutes as you adjust to the drug being in your system. As it increases your visual acuity, it also increases your sensitivity to the visual field distortions you would experience from HPPD. 

ie; the first couple times I took it, for the first 20 minutes or so, colours would become much more vibrant, but that effect quickly subsided to a much more preferable effect of mental clarity and visual acuity.

[jbalsa2]

@Jay1 Just thought I would tag you in this thread, as I remember having a conversation with you about the efficacy of using benzodiazepines to treat symptoms of HPPD. So far with my experience with this medication, it is as effective as benzodiazepines in mediating the symptoms of HPPD. As stated in a post above, topomax's mechanism of action on HPPD (as far as I believe) is by increasing secretions of the GABA-A neurotransmittor. This is what my psych doctor told me. As far as I know, this medication is relatively unknown in terms of this forum. I've been on this medication for 5 days now, and I feel amazing. 

As far as my progression in terms of how this medication is continuing to affect me, the stimulant effect is dying off to a more stable effect, whats fantastic is that I get this effect that comes in waves; where it feels like my HPPD is going into regression. This effect comes and goes, but then again i've only been on this med for 5 days.

I'm on 50mg daily now, my doc says it's safe to take up to 250mg daily, and that it's non addictive and safe to take on a long term basis. I'l keep posting as I go through treatment.

Edited April 29, 2018 by jbalsa2

[jbalsa2]

Thought i'd add this quote on the mechanism of action on the efficacy of topiramate. This seems to correlate with allot of evidence quoted on this site as to mechanisms of action to treating hppd.

 

Topiramate blocks voltage-dependent sodium and calcium channels. It also inhibits the excitatory glutamate pathway while enhancing the inhibitory effect of GABA. Moreover, it inhibits carbonic anhydrase activity. The relevant mechanism of action responsible for efficient migraine prophylaxis remains to be determined.

Here is the quote on the mechanism of action of benzodiazepines. Notice the similarity.

Benzodiazepines enhance the effect of the neurotransmitter gamma-aminobutyric acid (GABA) at the GABA_A receptor, resulting in sedative, hypnotic (sleep-inducing), anxiolytic (anti-anxiety), anticonvulsant, and muscle relaxant properties.

 

Edited April 29, 2018 by jbalsa2

[jbalsa2]

Just an update on treatment, we are now weaning me off of valium, and have increased my dosage of topomax to 100 mg daily.

The decrease in dosage of valium has proven to be rough, but for the 5 hours after my morning and supper time dosages of topomax I continue to experience the positive mood stabilizing effects and reduction of DP/DR effects. Currently however my HPPD symptoms are on the rise as I am coming off of valium, as I have been on it for a number of months.

We'l be replacing the valium with Buspar, which has been proven to be generally as effective as benzodiazepines in treating anxiety.

If i'm lucky, I might have found the golden combination of long term medications that can be taken to treat HPPD with the same efficacy as benzodiazepines, but without the negative side effects that benzodiazepines bring to the table.

I'l keep you guys updated, particularly after I get off of benzodiazepines completely, and we reach the maximum dosage of topomax, and as the buspar kicks in. (which usually takes up to a month to happen)

[Onemorestep]

That’s so awesome!!! I’m glad you found something that worked for you

 

ive been thinking about topamax for a while now actually. After making a compilation of all the meds that have helped me and hurt me, the common denominator I’ve found is AMPA overactivation is bad. Topamax is one of the few meds (besides keppra) that inhibits ampa. 

 

Some interesting stuff about ampa and hallucinogens. 

https://www.ncbi.nlm.nih.gov/m/pubmed/17728034/

[jbalsa2]

@Onemorestep if you have a psychiatrist that's open to prescribing topomax to you, i'd definitely recommend it. My experience has been nothing but positive. When I say that topomax clears up DP/DR, I should clear up the fact that it goes a little bit deeper then that - it goes to the core of the hppd and clears up the fizziness and brain fuzziness that the hppd brings and replaces it with a clear head.
My psychiatrist has been filling me in on the details of the drug as we go through treatment, he said it also aids in your brains ability to translate short term memories into long term memories, which I believe might also be one of its mechanisms of action as to why it aids in the depersonalization effect that HPPD brings.

Edited May 2, 2018 by jbalsa2

[Onemorestep]

@jbalsa2 have you experienced any cognitive issues? They nickname it dopamax for a reason  however if it’s correcting so much you probably just feel clearer. 

 

I do do have someone who will prescribe it. I’d like to try fycompa instead... if only because my mother was in topamax and she experienced decreased verbal fluididity and hair thinning. Keppra already messed up my hair. But I would rather be healthy and bald I guess. 

 

Im also just really interested in having someone with hppd try fycompa. If it works like keppra for some, it might be a great substitution. 

[jbalsa2]

Cognitively it acts as a stimulant at first. Imagine doing a line of cocaine - that lasted for 4 - 5 hours. It's that sort of mental clarity that topomax brings. But with that mental clarity, you see the decrease of the symptoms of the hppd with it. If you can picture that.

After you've been on the drug for a while, that stimulant like effect subsides and what you're left with is a mood stabilizing effect, and a sort of added visual and mental acuity and tactfulness that lasts all day, which sort of "is" the hppd at that point.

Hopefully what i'm saying here makes sense

[jbalsa2]

I'm excited to get to the maximum dosage of 250mg daily. We'l be splitting it up so that I take 125mg first thing in the morning, and another 125mg between lunch and 2 pm.

This will go along with my 200mg of lamotrigine daily.

[jbalsa2]

More news guys!

We've increased my dosage of Topomax again, at 75 mg 2x daily now, what's also fantastic is that the buspar that i've been taking has finally taken effect.

My psychiatrist has described the mechanism of action that these drugs are having on me, I am lucky to have one that's as knowledgable on the subject as he is. 

The Buspar is a serotonin agonist at the 5-HT1A receptor site and more importantly increases secretions at the GABA-B receptor sites.

He's told me that along with the Topomax that i've been taking (Which increase secretions at the GABA-A receptor sites) that they work synergistically together to mediate the effects of HPPD really effectively.

 

Today has been absolutely amazing. I've been coming down off of valium, and feel absolutely no come down effects at all, in fact I feel like i've increased my dosage of valium.

The combination of Buspar and Topomax together = the feeling I would get off of taking 2mg of clonazepam.

Edited May 4, 2018 by jbalsa2

[jbalsa2]

We're also working on titrating up my dosage of Lamotrigine to 200 mg daily

[jbalsa2]

Just an update guys, Have increased my dosage of Buspar to 15 mg 3x daily, as well as my topomax to 100mg 2x daily, and lamotrigine to 100 mg 1x daily.

All of the medications are beginning to stabilize, and I am absolutely flabbergasted at how amazed I feel. I'm tentative to speak to soon, but I feel like the way these medications are working, I may very well be on the path to being able to pharmaceutically cure my hppd, as that's exactly what feels like is happening. My visual symptoms are gradually tapering off, visual acuity is returning, sensory normality and thought process that I haven't felt in years is coming back. This is obviously coming with a completely drug free and healthy diet regimen to go with it.

There are side effects to the combination of these medications, but they far out weigh the positives that I am gaining from them.

I'l keep posting as I go along. I really, wholeheartedly hope that one day I can defineably cure my condition on a documentable basis and post that information on this forum in an easy to read an understandable format for others to read.

Thanks for taking the time to read guys.

Edited May 6, 2018 by jbalsa2

[dayum_son]

Thanks for updating this ! 

[jbalsa2]

Update:

Hey guys, just an update, had a bad reaction at 200mg of Topomax. Exascerbated my HPPD symptoms by quite a bit at that dosage.

We've dialled it back to 75mg split up twice daily (37.5 mg x2) which is where I found my sweet spot was in terms of it clearing up my DP/DR, and increasing visual acuity and mental clarity. 

Buspar is continuing to work really great at treating anxiety and brain stress symptoms that i'd get from HPPD (Feels much like a benzodiazepine) and will definitely be continuing to take it on a daily basis.

[jbalsa2]

Ah. Guys I have to update this. Ever since I had a bad reaction to topomax at 200 mg it ruined the combination of these meds. I've never been able to regain my baseline again, after re taking topomax and buspar. I've stopped taking both completely, visuals are still flared up from my breakdown at 200mg. Luckily this all happened in under 3 weeks.

 

If anyone does try this method, start out at the lowest dose of both meds. Stay on them for a full month, and then decide how you feel and if you'd like to keep taking them.

I'm on a break right now and am just on 100 mg of lamotrigine. 

[Onemorestep]

@jbalsa2 

I’m very sorry to hear the meds stopped working for you  I’ve had this happen to me twice as well—I find a strong solution and my etiology is changed by a different drug or by increased dosages. The combination no longer works after the negative event :/ 

 

this is definetely a cautionary to to go to move slowly. When you finally find something that works it’s so easy to push it to the limit. We all just want to get better and it’s hard not to get overzealous. Slow and steady wins the race with hppd.

 

now your reaction is something I find to be incredibly interesting. Especially the “cocaine” analogy. From my understanding, topamax is an inhibitory drug. They use it in seizure disorders. It shouldn’t be stimulating like that... but I one hundred percent believe you felt that dopamine rush. I had the same thing when I started keppra the first time. In fact, I couldn’t sleep for several days when I first started it. It was like I had a bit of meth. My thoughts on it at the time was it was rebalancing neurotransmitter systems in my brain and the incredibly sensitized dopamine receptors needed time to downregulate to match the increase in dopamine levels. And sure enough, after a few days, they did. And it lost its magic. This was on a VERY low dose of keppra too. I kept increasing until 1500 where the good effects normalized but the “magic” kept going away after a bit. I found a combination of things that kept it stable though. Inositol was one of them. Plus a shit ton of supplements. But I had my life back.... then I took Ritalin.

 

i was niave. Had no idea that one is kinda a no no for those with hppd. It screwed everything up. Keppra then turned on me and I had to discontinue. 

 

I dont think ill ever really know what keppra was doing to help or why it stopped after I took Ritalin. But it’s taught me that this disorder is more complex than I previously thought. 

 

I hope you find another combination soon to help yourself out of this funk. It’s so hard to experience mental well being and have it stripped away again. But if you can take comfort in anything let it be that a personal cure is possible and you tasted it so it can come again.

[Onemorestep]

Also, it must be taken into account you were taking multiple medications which all have acute effects and downstream effects over time. It’s almostnimpossible to figure out exactly which of your medications caused your neuro soup to spill. 

 

Here’s two things though to think about off the top of my head: 

 

topamax and lamictal do opposite things to ampa receptors. The topamax could have been reducing the ampa acutely and that was helping... but perhaps it got overwhelmed by the lamictal after a period of time? I know for me, ampa excitation = anxiety, increased visuals, bad juju

 

buspirome effects 5ht2a receptors. One always has to be careful with this one. You touch that guy wrong and suddenly you start reacting different to everything. 

[jbalsa2]

Yup. What I noticed with buspar was that if I took it alone it would make the visuals worse; interestingly enough being on a dosage of topomax was able to make the negative side effects of the buspar disappear while holding onto the good ones. Unfortunately my doc really wanted to push the dosage of topomax, and when the topomax ship hit the iceberg the whole thing got revealed.

 

Topomax was doing a really good job at hiding everything that was going on and replacing it with a dopamine rush (think anticonvulsant, and your brains literal ability to block out allot of neuroreceptors you normally wouldnt and just bypass all of that, and think) 

 

What I'm not sure about is this, for the first two weeks I did feel great, I think what ultimately winded up happening was that I couldn't notice that buspar was having a negative consequences on my neurochemistry, and that the topomax was hiding it. After having a negative reaction on topomax everything flipped and started to come crashing down.

I'tl probably be a week or two before I return to baseline, but interestingly enough in this really sort of 'exascerbated' state after stopping both other meds, I've continued to take lamotrigine. 

Interestingly enough I seem to notice a quaint positive side effect from taking the lamotrigine. I've only been on it for a month,  and maybe it's only in this exacerbated state, but it absolutely helps with a certain level of my hppd's excitation right now. 

[jbalsa2]

Topomax is used in addiction/rehabilitation centers here as an aid for people who are going into post acute withdrawal from other drugs as it has an initial stimulant effect. The whole idea being that it's a pharmaceutical option to being able to viably provide people with a better chance of not relapsing. 

[jbalsa2]

I'm only speculating at this point, I can't help but wonder; i've been on lamotrigine for a little over a month, and just started taking it in the mornings. In my current overly stimulated and exacerbated state the lamotrigine is having a very positive side effect, visuals are decreased by like 50%, and my body calms itself right down from all the other meds I was on.

It really sucks, but the lamotrigine is noticeably working now, something i've never noticed before. I can't help but wonder if there is a connection between that overly stimulated state, and the lamotrigine actually starting to become effective. Perhaps part of the reason why it works for some but not others? Not sure, and not going to say anything thats either here nor there.

What makes me wonder now is if the lamotrigine will continue to work as it is after my symptoms return to baseline, or if it is just temporarily helping my overstimulated state. Im reluctant to say.

[jbalsa2]

Either way, i'm going to continue to pursue treatment, for now with lamotrigine mono therapy for a couple of months. Il keep tabs on myself I suppose.