Modafinil

Jaguar - thanks for your comments.

I agree that Modafinil needs monitored. It is a strange drug. I have tried it myself and has little effect unless the doses are quite high. I have used it to augment Paxil. my doctor (my psychiatrist) suggests a combination of Venlafaxine and small dose of Mirtazipine - in he opinion a great combination for those who do not respond to standard medication. Some days it really helps me and other days in makes me feal worse. However, developing drugs like Modafinil I believe is better than the developing different, more addictive stimulants.

I'm glad it has helped your son - but there's probably no one who can tell you exactly why - they may know some of the reactions that occur - but how that 'actually helps' is maybe a few years away.

What I do know is that there are clear uses for Modafinil beyond what it was originally developed for. Type it into the web and you'll not see very much on narcolepsy - more used off label as a cognative enhancer and a drug that enhances mood. As I said it's really good it has helped your son, probably in a way the drug was originally developed for.

From above it might appear I'm typing this from a 'secure ward' because I mentioned the dreaded word psychiatrist. I do have an illness but I've just lest a £60K job to set up a consultancy business. I would really encourage people to see doctors who are 'specialists' in the mind by either going private or being referred. These people know the various combination that are most effective. Obviously done in partnership with the GP. No one would think twice about going to a heart specialist - what's the difference to going to a 'mind' specialist.

I hope your son continues to be well. Take care

Thank you, David, for your interesting comments. As you clearly appreciate there is a lot of the unknown in this wide matter.

I have a problem with psychiatrists, many of whom appear to stick with what they have always done and the patient becomes more of a guinea pig than a patient needing the best care. On the other hand psychologists bring an open mind to the patient, looking at the patient as a person not as a problem to treat. All this is a generalisation based upon personal experiences involving a few family members.

You are right about Modafinil. When it was prescribed, just a few years ago, my son was told that it might not work for him and that it was then unusual for his condition - Asperger Syndrome with OCD and agoraphobia - but it has proved to be a huge benefit. As he is now 47 you may imagine the relief he feels as well as my wife and I. So many wasted years prior to 2007 as he was misdiagnosed to be bipolar with no hope for the future.

Following the correct diagnosis I have spent much of my time dealing with autism and now run a group for parents of adults with autism. There has been very little thought given to the adults and while school age pupils get mostly the right attention there is still nothing to follow on from age 18. The parents in my group, with a couple of exceptions, all face the carer's dilemma - who will replace us. All were unaware of autism during their child's school years and some had not had any diagnosis. This is slowly being improved so I hope future parents will be better prepared.

Hi Jaguar - the fact that your son is now 47 suggests you have had a lot to shoulder for a long time. I can relate to that in a small way. My middle daughter had behavioual problems and was assesses several time around the age of 6. She was eventially diagnosed as having ADHD and was given one of the usual stimulant drugs. The drug clamed her down and 'may' have helped her academically. It was also thought she may lie somewhere on the autistic spectrum - but not at a level that had a severe impact on her life. She complained that the drug made her sad. We made the decision to take her off drugs and we saw the return of a happy little girl - who may never excel academically but is enjoying her childhood. she can be a handful but the decision I believe was correct.

The positive effects of Modafinil are only beginning to emerge - I think it's very frustrating that it seems destined to be off label for many conditions. Maybe this drug has help your son in a number of ways - until proper research is carried out we won't know. I know there is research into developing a drug with properties similar to Ketamine. Ketaimine has properties that can have instant and amazing effects on depression and maybe other conditions - unfortunately Ketamine is extremely dangerous when misused. My point is that there are angles of research that, in my opinion are not being pushed hard enough.

Brand Modafinil is absurdly expensive - hence the explosion of drugs manufactured in India. Many people make the assumption that Indian drugs, without any facts to back them up are fake. The truth is there are many reputable and controlled drug companies in India making drugs like Modalert (Modafinil) and Waklert (Armodafinil) which is meant to be a little stronger and longer lasting. The problem is finding a reputable source from India.

I admire the fact that you run a group. My focus has been on depression, but many other mental illnesses need people to educate relative etc. with what the need to expect. I want to get involved in helping people who are in depression and are recovering by ensuring they are provided with the proper techniques to change negative habitual thinking and lifestyle options that have exacerbated stress leading to depression.

Finally - I can relate to your comment on psychiatrists. As an MDD sufferer I paid to see someone privately. I was put on Valdoxan. Either I was very unlucky of this drug is the result of a 'drug company' dinner. However, where they do differ from GPs is that they are much more likely to have experience on what combinations are effective. One thing I was going to mention was the fact your son is on Prozac - a front line first choice. If you ask professionals (including my brother who is a GP) a drug with a higher efficacy is Venlafaxine - has your son ever tried this?

Anyway - need to focus the next few weeks on getting better and bringing in some money. I wish you all the best in looking after your son.

Thank you, David. My wife and I have been through our own sort of hell trying to find answers, get people to act and fighting that brickwall of bureaucracy that carries on regardless (ignoring their own illegalities) not just for our son but also for parents with strokes, dementia and care homes, inspectorates, MPs et al and even when told of our legal position, that being ignored. That's life. But it does wear you down when it is continuous.

So do not be surprised to hear that I have used Venlafaxine; my wife is on Paroxetine. As long as our son benefits from Prozac (with or without Modafinil) we are just happy for him and it certainly has made our lives a bit easier. What we have learned, the hard way, is never to accept what we are told as being correct.

We only have that one life and only we are going to protect it; it is too precious to let others mess it about. So I wish you better health and success in whatever you do.