The recent RxISK post on PSSD and Thermal Thresholds led to a lot of comments about what should “we” – those with PSSD or related conditions – do. There was a looking out to FDA or other regulators, doctors or politicians to do something.
Coincidentally on davidhealy at the same time a pair of posts on antidepressant induced suicide in children, The Greatest Failure and Spectre of Dissent provoked a similar response, partly aggravated by the images that went with the posts. What do you want us to do? Tell us.
A structural response to what should be done in terms of drawing problems to the attention of FDA and other regulators, Governments and others and whether they can be of any help in PSSD or other problems is now in a post just up on dh – What To Do about Suicide.
This post deals with what readers can do if they have a particular problem or are trying to help someone with a particular problem.
Find an Anne-Marie
The bottom line is everyone needs an Anne-Marie.
Anne-Marie dropped out of school early. Years later she was put on an SSRI which caused her to drink compulsively. She raised the issue with her doctor, the company, and others and later with AA all of whom dismissed her but she did her own research and worked on how SSRIs do this. Her conclusions mapped straight onto internal drug company conclusions that no doctors, regulators or others knew about. Her story is Here.
The breakthrough aspect of all this for me was that here was someone telling me, who has a PhD in the serotonin system and serotonin reuptake inhibition, things about serotonin and SSRIs that I didn’t know.
Faced with an Anne Marie you’d have to say – motivation is worth more than expertise. This is what the AIDS story is all about as well.
Key to the Teicher 1990 article about SSRIs inducing suicide was a set of patients telling doctors they could distinguish the suicidality induced by depression from the superficially similar suicidality caused by the drug. Perhaps they were particularly persuasive or the two doctors and one nurse were good listeners but this article changed everything – and triggered a company response – “the plural of anecdote is not data” – which is now the biggest problem everyone in medicine faces.
Anne Marie-ness is the reason to be hopeful about solving PSSD, but it will take a bunch of Anne-Maries. One of the neat things about RxISK is how many Anne Marie’s have migrated this way.
Our Anne Marie’s don’t always comment on posts but for instance the Thermal Threshold post was written by someone who has been working hard on pinpointing what kind of test might deliver a positive result that would help people get believed and would also help narrow down the target for further research.
Unless we put things on a plate for high-powered researchers they aren’t going to do anything, partly because they have their own commitments. If we put things on a plate for them, they will get the credit which is fine if that spreads the word. If they turn out to be decent people they will someday let the world also know what really happened.
When a post like Thermal Thresholds goes up, we need people to see if they can get the tests done somewhere – or even make their own kit. We only put things up that seem reasonably safe and that we’d be prepared to have done ourselves.
Even negative results will move things on.
We also need people who think the problem is in the brain or elsewhere to come up with tests that those affected might be able to get done in a clinic near them. The contributors to the various PSSD forums have done remarkable work over the years testing all the obvious drugs to see if they will reverse the problem and speculating on brain mechanisms. Getting a test that reliably picks out people with the problem is a possible next step.
One of the other Anne Maries who does comment a lot on the various posts (SS) did a lot of research on Thermal Thresholds following this post and came up with the following options – some of which may help make it easier for readers to get their thermal thresholds tested.
AD, another Anne-Marie, also did some fascinating research, in response to Thermal Thresholds. This is someone who had been in touch with RxISK before, who lives in France but comes from another country entirely, so to access complex scientific articles in English without any healthcare background is quite an achievement.
Here is the sequence. AD figured he’d pay some heed to the RxISK ideas about neuropathy in withdrawal and PSSD.
I don’t understand the great majority of what is described in these links. The reason I thought it might be interesting is because you wrote on rxisk.org, that maybe something that could be useful for protracted withdrawal issues would be to find something that activates the sodium channels.
I don’t know if a sodium channel agonist is the same as a sodium channel activator or opener, but I found these two links that talk about “dimethyl lithospermate B” that is found in a Chinese herb called Salvia miltiorrhiza or “Danshen” :
These articles turn out to be fascinating. Danshen is Red Sage which can be got – in France anyway and AD is trying it.
“Concerning the Chinese herb “danshen”, I bought it and started to take it two days ago. I bought it in a crushed form. I take approximately 3 grams of it and make an infusion with hot water 2 times a day (6 grams per day)”.
But just as useful is what happened next. I wrote to Professor Suk-Ho Lee in Seoul who is the lead author on these papers. (The main use to a David Healy in all this is that he can write to people like this who pay heed because DH has academic credentials – for the moment anyway).
Professor Lee responded with a helpful and gracious response. He read the papers we sent and suggested that he didn’t think Danshen would help because it seemed to have its greatest effects on the Nav 1.5 channels which are the sodium (Na) channels in the heart which is what his group were interested in. But then he clarified for us that the brain primarily uses Nav 1.3 channels and the peripheral nerves use Nav 1.7.
This is a hugely helpful step forward both for those who figure the problem is in the brain and those who figure its in the periphery. It doesn’t mean Red Sage won’t work but it might be less effective than an agent acting more specifically on the 1.3 or 1.7 channels.
In the case of the peripheral nervous system, this brings Low Dose Naltrexone (LDN) into the frame.
“I have found some links that talk about Nav 1.7, Congenital Insensitivity to Pain and how the analgesia can be reduced (I think temporarily) with opioid antagonists. Here is a link:
In the past several people with PFS or PSSD or PGAD have tried LDN. Low Dose usually means up to 5 mg per day. My suggestion is that anyone interested in this idea try somewhere between 0.25 and 0.5 mg per day – Very low dose (VLDN).
Many people can get prescriptions for LDN from doctors these days and there is at least one pharmacy in most countries that will supply it. It is not expensive. The usual recommendations are to begin very low if you have been taking psychotropic drugs. Do not take if you are currently on psychotropic drugs. My hunch is those with PSSD, PFS or PRSD are likely to be particularly sensitive – hence the even lower dose.
If Thermal Threshold Testing and an even partial response to something like VLDN or Red Sage point to a Nav 1.7 problem, this is where researchers who can do what we can’t do are more likely to get involved. There are research centres who specialise in the genetics of Na channels and others that can investigate possible auto-immune disturbances affecting these channels.
AD did even more. He found an article on pirenzepine – an anti-cholinergic drug that seems to have nerve repair properties. Anticholinergic drugs can be anti-nicotinic or anti-muscarinic – pirenzepine is anti-muscarinic.
Over 3 years ago we published a post asking people to look into Benztropine. This is another anti-muscarinic agent that was removed from the market in many countries mysteriously a few years ago – after it was reported to have nerve repair properties that might make it a blockbuster treatment for MS.
We asked you all a bunch of questions but no-one got back to us. One person with PSSD went to extraordinary lengths to get hold of some (it’s still available in the US) and reported a benefit but he has dropped out of contact.
The pirenzepine link reinforces the idea there are possibilities in this area. It may be something other than an anti-muscarinic action that produces the benefits here. So not all anti-mucarinic drugs may help.
It could well be that even if the problem is in Nav 1.7 channels that the answer may lie in a completely different action that benztropine or pirenzepine have to some degree – perhaps not quite the right degree. There may be even better drugs out there that do whatever it is that might be helpful
This is where the work of people like Anne-Marie and AD come into the frame.
Others are contributing huge amounts. Spruce has personally contacted a very large proportion of the doctors and pharmacists in Western Australia. Heather and others affected by Ro-Accutane have done great things hounding regulators and companies. Laurie Oakley is working hard on getting support networks set up (more next week on this). These and other contributions are all needed if we are going to make a difference. Not everyone – certainly not me – has the patience or skill to spot leads in research articles outside my field of expertise.
The range of skills people have are astonishing and combined can achieve astonishing things. This can happen provided we don’t sit back and think there are experts out there who are more skilled than us or have our interests at heart.