There has been something of a hiatus on posts on DH and RxISK in recent weeks. There are a few reasons – one of them outlined here and one to come next week.
Part of the problem has been knowing what to say to people with PSSD and severe withdrawal. I have been swamped with emails that are terribly difficult to answer. It would be good to get input from readers on this topic.
One of the things RxISK can offer someone with PSSD, Post Ro-Accutane Ssexual Dysfunction, enduring withdrawal problems or a range of other problems is recognition. Yes this drug can cause that problem. Simple recognition can be helpful. In legal settings an endorsement can be life-changing.
But in day to day life, for someone with withdrawal problems in particular, a diagnosis brings an expectation of more – that we can do something to put things right. By the time people come to RxISK with queries or come to me in a clinic in North Wales, many of them have tried all the obvious options – slow tapering, switch to liquid, exercise etc. – and they are still having problems. They, and sometimes their families, have begun to tire.
“You’re now going to tell me what to do to sort this lunacy out aren’t you?”
Stuart Shipko, a physician in California, caused a huge stir some years ago when he bluntly said that SSRI and other withdrawals are incurable. Many of the forums doing invaluable work supporting people with withdrawal problems were upset. This was too negative a message.
In the same way, there are regular comments on the PSSD posts here that we are being too negative spinning the condition as one from which recovery will be slow or even glacial.
So while getting a diagnosis beforehand sounds great, for some people, when they realize the situation, its a bit like getting a positive HIV blood test result back in the days before triple therapy – it takes away hope rather than helps.
These issues get complicated by some of the forums that are otherwise doing good work who have a line in selling remedies. The selling can be harmless for people who are going to recover anyway. But for people who aren’t going to recover easily it can be as cynical and greedy as the selling by pharmaceutical companies that has landed people in these predicaments in the first instance.
The New Scientist recently featured an article about Antidepressant Tapering Kits. The people behind this are all good. It doesn’t seem right to quibble with someone who is trying to make things better. But the problem is tapering is not the answer for everyone and even for those it can help, it might have to be vastly slower than these kits suggest. The worry is that people with a real problem will end up feeling they are to blame if this one size fits all approach doesn’t fit them.
The basic problem is we don’t know enough – just as with AIDS in the late 1980s.
Not having an answer makes it very difficult to direct these patients to the RxISK e-Consult site which charges a lot of money for a consult. A RxISK consult can be worth it for a report that will make a big difference for someone if they can put it in their medical record. Its a lot harder to suggest this as an option for people who get in touch with enough details to make it clear that an honest response from us is going to be pretty gloomy.
But not suggesting a Consult gives a message also – that you are in a grim situation and there may not be much that anyone can do. Putting this in an email seems heartless.
An email or a consult that soft soaps the problem and is encouraging doesn’t seem right either.
At the end of the day people with PSSD or enduring withdrawal are in a position not completely unlike that of AIDS patients 25 years ago.
What AIDS activists showed all of us is that if those affected hang together, if they organize, they can force the establishment to change tack.
They also took things into their own hands rather than sat back and waited for experts to come up with answers – and they were up against real virologists and real clinical trialists. Those of us with PSSD or enduring withdrawal or most of the problems that psychotropic drugs cause are up against figments of a marketing departments imagination – Professors of Serotoninology etc.
Another issue at play here regarding which people with PSSD and people with withdrawal from Lyrica or Zyprexa and all drugs in between are better placed than people with AIDS were is that the key issue is not rocket science its Why Don’t you Listen to Me?
As many comments and posts, most recently Spruce covering PSSD, bring out doctors and others for some reason don’t listen and don’t see. Its one thing to have no answers, its quite another not to listen. This rather than what goes on the brain is the mystery.
It seems wrong to blame people in withdrawal or with PSSD for this but in my opinion we unwittingly contribute to a mistaken turn to experts when we figure that the answer lies in latest brain scanner – this comes through in comments from Heather and Mary after a recent post. I was called on to answer but haven’t.
It’s as understandable that people think the latest high tech might offer an answer, as it is that people think a glass of cold beer or chilled wine looks good on a hot day, but these are all temptations to resist. The problem is why aren’t you listening to me. No brain scanner is going to provide an answer to this. And people without a medical degree are at least as well placed to offer answers to this mystery as those with one.
It seems highly likely to me that the problems in PSSD and withdrawal are in our bodies not our brains. But it needs great descriptions of the problem, probably involving collaboration between sufferers and medics, that are endorsed by all concerned before we can begin to decide whether we should be looking at peripheral or central nerves.
So the question is why are these conversations not happening.
This is the question that people who come to me need to answer. Until this gets sorted I am not in a position to magic answers to anything else out of thin air. I get help from people who are helping themselves, and maybe can add a little to what they are already doing. Some of them have been suffering for 5 or 10 years but they email me regularly and update me on things that look like they might offer leads. It is clear they aren’t about to give up.
I have difficulties when people drop a problem in my lap, especially when there are hints they are going to be angry when I tell them that its people like them who are going to have to help me help them and others like them.
Any thoughts anyone has on how to deliver a message like this without causing too much disappointment would be very welcome.