teal

@James_80. Yeah. One model of mine, is that my fight-or-flight-or-freeze response has gone haywire and is permanently stuck on. Heart racing. Dead feelings. I get better by running, I get better by lying down. Both are actions you do to escape danger.

 

@DPCat. None whatsoever. I know some with POTS actually feel worse on beta blockers. I got no effect from it, besides a heart that didn't beat so fast, which never has bothered me anyhow.

 

My health is poor, hence the late reply. 

Appreciated, Mayer-Gross! My health is poor, so I am slow to respond.

 

the physiological abnormalities found i DP do not have a origin in the CNS -comes from the CNS to the brain. It is likely the other way around -from the brain to the CNS in DP or what is called "fronto-vagal network"

 

Amen! Early on I was put on beta blockers, as the doctor thought that if my heart rate problems would subside, my cognitive symptoms could subside. I never believed it would have any sort of effect, but went with it thinking I'd at least have nothing to lose. 

No problem, we're all here to get better and to help others get better.

 

Agree!

 

My OCD like symptoms weren't related to DPDR in that way, they were rather political, and the only thing that has suppressed them so far is alimemazine, which does a half good job at it.

Though it is sort of expensive (even in EU) research suggests Lamotrigine is a promising drug against obsessive thinking and intrusive thoughts, which is I think a primary reason DPDR (when it's secondary to anxiety/OCD that is) seems to be improved via this combination of meds.

 

Lamictal is supposed to work after about 6 weeks, my psychiatrist said, so it takes time.

 

Much appreciated, Cedric! Much appreciated! 

 

Out of the blue I got some OCD like symptoms a while back. Never had it before, but bang, there it was. So perhaps with Lamotrigine I could "feed two birds with one scone", so to say. 

I have never by myself thought i suffered from anything somatic.

I have never thought I suffered from anything psychiatric. Mononucleosis, CFS and lots of other diagnosis have been suggested.

But, the majority with depersonalisation who tries clonazepam do not benefit from it,- so it is not a diagnostic tool.

The majority who tries picking a lock with a binder clip fails, but that doesn't mean a binder clip is not a tool, it just means it's not a good tool, not a professional tool. If I'd take clonazepam and nothing happens, then whatever, but if I'd take clonazepam and I'd get some sort of instantaneous relief, then that would indicate my symptoms are psychiatric. Such an indication would be valuable to me. I guess it wouldn't be valuable to you, but to me, yes. Sure, sure, people with neurological conditions can also improve from benzos (absolutely!), but nonetheless it would be an indication I am on the right track.

But, some will say that since clonazepam works depersonalisation disorder dosn´t exist because it is a anxiety disorder with symptoms of depersonalisation/derealisation. You have go to therapy for anxiety. That is the position among some psychiatrists have here in Denmark.

Bully for me that such people aren't in charge of me. If I'd get better, then I'd think "gee this means an F-diagnosis is more probable", and the only F-diagnosis that hasn't been ruled out, which gives anhedonia, is F48.1, where I score off the charts on the symptom scale. Getting such affirmation would be encouraging going forth, when making attempts at getting further treatment.

If I'd get access to clonazepam, which I won't do in the near future, then I'd try 0.5 mg and then wait, then a bigger dose, say 1.0 mg, then wait, then a bigger dose, so on and so forth. Much appreciated what you write about doses! That you needed a higher dose!

Thanks for sharing!

 

I am on modafinil, and it really gave me energy to focus. Lately I've been having more trouble concentrating, and I am not sure if it's due to daily modafinil and caffine use (low dose, but every day), or due to the fact that there has been extreme stress in my life lately.

The other thing is the claim of being at out-pateint programme with such high numbers a patients in the former Sovjet. The awareness of depersonalisation is very low and so many people ending being referred to a outpatient programme sounds very unrealistic. Their response rate is also much higher than the english data. I think it is all made up.

 

I think you're right.

 

A while back, maybe half a year, I found some reports on Reddit, in the comment section, about getting better on naloxone. I did this Google search now: site:reddit.com depersonalization naloxone OR narcan

 

And with those keywords, I took a quick look over the comment section, I didn't see any "I got better from naloxone", but I saw this.

 

 

I'm on lamictal and it's doing great so far.

 

 

I was sick for 5 years prior to this and then tried Lamacital and it cured me for 7 years . Unfortunately it just came back (...)

 

 

So, DAY 2.

 

I've taken a dose of Nyxoid 30 minutes ago. So far I feel nothing.

Update. One hour fifty minutes after taking the dose, I got diarrhea.

I've got six Nyxoid nasal sprays, each containing 1.8 mg naloxone. I used the first of them today, eight minutes ago. To get a smaller dose, I blew my nose right after taking the first dose. Got five more doses left for later.

 

Why try? In the British Journal of Psychiatry they write.

Nuller et al(2001) found a significant transient beneficial effect of naloxone infusion on symptoms of depersonalisation in 10 of 14 patients studied. This intriguing result suggests a possible role of the endogenous opioid system in the pathogenesis of depersonalisation, and the possibility that anti-opioid drugs may have therapeutic value. To date, this hypothesis has not been explored further in the literature, despite the impressive results from this pilot study. 

I put in 175 EURO of consultation and control fees.

 

I think I speak for the whole boards when I say we're grateful for the effort you've put in. Making cases available for the public, like you've thought of in Italy, would hugely benefit the community. 

We know from Diffusion tensor imaging (DTI) and structural studies with MRI scans that the longer you have had depersonalisation disorder, the more it affects the brain. The networks that have made depersonalisation have made a psychical imprint on the brain -perhaps also on the body. In the french study they are also looking for structural changes after TMS and looking for setbacks in a follow up to see how long the affect lasts.

Pity to hear. Oh well. Could you point me to good info on this?

Those who have a reduction will like see setback but cannot get treatment again because they where a part of a trial of a non-approved treatment. It will still be non-approved and setbacks can not be treated.

The pricing of rTMS in some places like the UK, US, Schweiz have done that i have never considered those places as an option for a treatment.

I can relate. It would be awful to be unable to get follow up treatments. I am no rich man, so every dollar counts. But on the other hand, even if there were no follow up, God how good it would be to get better, albeit temporarily. It would be like getting my head above water for the first time in decades. Oh, how good that would be. Just a single session where I'd get somewhat better, would really infuse me with hope.

I am seriously considering getting the MRI scan in Hungary and meeting and talking with them, and then heading back for a full treatment later. Right now I am going to try klonopin for the first time. Naloxone too. But Hungary is really my best bet.

Comparing prices. Quick and dirty, Mayer-Gross, just to contrast England and Hungary.

 

SMART TMS in London

5000 £ for rTMS (given that the price would stay the same if/when they'd get neuronavigation)

395 £ for an MRI (this is quick and dirty)

2800 £ for living at a hotel (it costs about 100 £ per night for hotels that are hard by SMART TMS London)

= 8195 £ for all that.

 

Flash Clinic in Budapest

763 £ for rTMS

150 £ for likely consultation and control fees

89 £ for an MRI

728 £ for living at a hotel just by the clinic

= 1730 £ for all that (using today's HUF/GBP exchange rates, naturally)

 

So even if they'd get neuronavigation in England, which I think they should, even if they'd get it, I think London would be a poorer choice. They seem more professional, more skilled and frankly more dedicated in Hungary.

 

For the sake of simplicity I set the stay to four weeks, even though the study lasted ten weeks. Hotels only include breakfast, so other living expenses and air plane tickets must also be taken into account. It's probably possible to get it for cheaper, if staying outside the city and taking public transport to the center every «treatment day».

 

Another way to cut costs could be to rent out the place where one currently lives on AirBnB while in Budapest. But I guess that would be way too stressful for most, myself included. So I'm just mentioning it.

I've skimread this. It says that they got 266k £ in the period March 12-14 (doesn't say what year) and that they're 100 % funded. Is this a new study to come?

Godspeed, Mayer-Gross.

Since 2016 there has been no funding for research at the depersonalisation research unit. Staff is highly reduced. 

 

For heaven's sake!

That is a neurological  research facilily in Moscow. I have never said that there wasn't neuronavigation. 

 

I never said that it was easy.

 

I have got a green light before, at another Russian research facility, to try a more invasive treatment than rTMS. The drugs alone costing 21,000 USD, plus compensation to the researchers, entailing an extra "language barrier fee" that I myself proposed. You're a bright guy, so you know what's true in the West needn't be true in the East. Where RECs bar the road in West, there are fewer hurdles in the East. But that doesn't mean it's easy.

 

Research staff usually have a more intellectually curious mind than others, and are more apt to wanting to learn about novel treatments and diseases, so if a research facility is on board with it, it needn't be a disadvantage—compared to a regular clinic which hasn't treated DPDR before. Given that they take time to read up on it.

 

I am new to DPDR, and truly appreciate your posts, Mayer-Gross. They're gold. But don't put words in my mouth. My attitude is that's hard, but certainly not impossible.