Wednesday, 17 May 2017

The NAPS Conference.(National Association of PMS). A Summary.

The National Association of Premenstrual Syndromes Annual conference.

Last week I was lucky enough to be able to attend the conference. I say lucky as its normally only professional medical personnel whom are invited. As far as I know only myself and one other sufferer have ever been granted access, and so it was both a privilege and an honour.

I was representing the Gia Allemand Foundation in the hope of further collaboration and the sharing of any relevant  information which maybe shared with our own clinical advisory board.

There were several senior consultants in attendance.

Mr Nick Panay, Chairman of NAPS and Consultant Gynaecologist.
Dr Michael Craig,  Gynaecologist and senior lecturer in reproductive psychiatry.
Dr Louise Newson. Clinician and Menopause expert.
Dr Carrie Sadler. Clinician and trustee for NAPS, as well as research roles in PMS.
Dr Hannah Short. Clinician and Trustee for NAPS and assistant in Gynaecology.

After Mr Panay's welcome, DR Louise Newson gave a talk on HRT and the role which it now plays in our society. As there have been a huge amount of  negative media reports, Louise was able to explain the different types of HRT available and what they mean for our health both emotionally and physically.

As many women suffer enormously during their reproductive lives she was able to dispel the myths of HRT being carcinogenic and also the benefits of some being able to allow the continuation of a fulfilling sex life. She also highlighted the fact that natural hormonal intervention can protect us from heart and vascular diseases, as well as protect our bone density and emotional stability.

DR Michael Craig's talk was absolutely fascinating as he was able to share the latest brain imaging slides and talked extensively about how males and females empathise in an entirely different way.
Indeed the response in the Amygdala was visually different on the scan, and cerebral blood flow in mental rotational tasks was less active in the males.
He also explained how in autistic humans there were much higher testosterone levels, although at present we don't yet know why. The crossing of cortisol into the placenta and into amniotic fluid also seems to have some relevance here too.

In terms of reproductive depression traits, so PMDD and PND, the binding of oestrogen to serotonin receptors was also compromised, which also increased the risk of both Alzheimer's disease, and dementia. This lack of efficiency in binding is also critical in both epilepsy and migraine with aura, and so therefore may also be attributed to that.

Its important to say the Dr Craig found a 50 percent co-morbidity rate with core pre-menstrual disorders, which surprised me enormously. I had expected the number to be lower as a Pre-menstrual exacerbation, but it was indeed clarified by Dr Nick Panay when I questioned him further during coffee break. In other words there is often an underlying mental health disorder, whether it be major depressive disorder or even bipolar,which then activates extensively during the late luteal phase..

Mr Panay's talk was obviously greatly anticipated and it has to be said that he is also the nicest, kindest doctor you could ever wish to meet. He is full of compassion for all suffering women and utterly dedicated to his work. He is also anxious to collaborate with the Gia Allemand Foundation and swap dialogue with Professors in the States. This can only mean more research and more understanding for the long term.

Firstly he spoke about the importance of charting the symptoms in order to gain further clarity and the knowledge that PMDD/PMS is organic in origin. So therefore, it has a cellular cause with multiple aetiology and is a biological disorder. He spoke about the recent findings in cellular response and gene variants published by the Institute of health in North Carolina. He also told of the complexity in the sequences of cells and how they respond to oestrogen and progesterone. The struggle is real.

The complementary therapies for PMS which show the most promising results are,

Strict diet and exercise intervention.
Vitamin B6- 10-50 mgs daily.
Calcium, of which the evidence is consistent.
Isoflavones,  particularly when there is migraine with aura.
Agnus Cactus, BUT it must be of exceptionally high quality.
St Johns Wort which also showed a significant change in symptoms.

Once however, the symptoms move into PMDD criteria,
Antidepressants for the short term,
Hormonal therapy for the long term, particularly if suicidal tendencies are present.
The contraceptive birth control which had shown the most significant results was YAZ which has a license for PMDD because it contains the lowest amount of synthetic progestins.

GNHR Analogues, both Zoladex and synarel were both more effective than tibilone but Mr Panay highlighted the need for regular bone scans and the need for a multidisciplinary approach. Last but not least, was the hysterectomy and removal of ovaries which of course is the most effective. If the sufferer doesn't respond well to hysterectomy, she must be scanned for Ovarian Remnant syndrome and even recommenced on the GNRH analogue.

During Dr Carrie Sadler and Dr Hannah Shorts question time I expressed my concern that so many women were having a severe and catastrophic response to both Depo injection and the Mirena coil, (myself included). Dr Sadler explained that again, it was the intolerance to progestin which would cause this. Personally I would like to have had a warning of some kind before using Depo, however its highly probable that anyone using Depo wouldn't realise the severity of the long term effects, and would at least have it once regardless.
 I also expressed my concerns about using synthetics particularly on young pubescent girls who have yet to establish a cycle, but are often given birth control pills as a response to painful periods.

Sadly there is no such categorisation of prescribing synthetic hormones and regard to mental health.
This is all the more worrying as now there is a self administered contraceptive injection available which anyone can use at home.

On the whole the conference was informative, interesting and confirmation of the huge amount of research that is going on behind the scenes for all suffering women. I am delighted that I was able to attend and bring you this information and hope to be invited again. In the meantime it is important to mention that the Gia Allemands Foundation also has a conference in October. Register now at to learn more and view it on live stream.

Take care of you.


Thursday, 9 February 2017

Anti-depressants, Good or Bad??

Morning everyone!

I hope this finds you well and not suffering too greatly. Unfortunately, for many of us living with long term illness, the Winter itself can bring added issues, with long dark days adding to our low mood. The flu virus has been particularly aggressive this year, and is harder to shake off if you are suffering from a mood disorder of any kind. I'm hoping that this latest cold snap will be the last of it, and we can now look forward to the Spring and the sense of hope that it brings with it.

Just when I was struggling with something inspiring to write about, this week 2 articles were written in the newspaper (both the Daily Mail and The Mirror) which provided me with immense food for thought. The subject of anti-depressant medication never fails to rouse the hackles, and is both controversial and greatly misunderstood.
 As with all medication there are side effects, some serious, some not so serious, and never before has a drug been so infamously discussed.
Unfortunately there was, in my opinion, one very unbalanced article written about psychiatric medication, clearly by a journalist who had never needed them,,, and then there was another by Fearne Cotton, who had needed medical intervention, and had used antidepressants temporarily with good results.

Suffering from depression, regardless of whether it is hormonal in origin, or through trauma or genetics, is extremely serious indeed, and is also a killer.
 In the UK alone last year, there were 6581 suicides, a tragic statistic which shows both the aggression of depression and the harsh reality.
 The struggle is real, and you cannot override a depressive illness with the power of subjective thought, no more than a diabetic can create their own insulin. My own illness, I have no stigmas and make no apology for it, showed itself by the time I was 14 and has a genetic input for sure. (I'm just about to have my DNA analysed, so will be able to tell you for sure very shortly, which gene is responsible).

Both articles I read this week have shown both the downside and the healing power of SSRI medication, and I too want to show the balanced side, so please bear with me.

The negative argument for antidepressants is the side effects of course, the worst being within the first few weeks of taking them, and a period of adjustment, until the body becomes used to them. ALL drugs have side effects even paracetamol, but it has to be said that the side effects of antidepressants can be troublesome in most cases. Sadly this is what causes people to discontinue them before they've had a chance to kick in,up to 6 weeks in some people.

 The second, is the difficulties experienced in coming off them, and quite often this is where most people have the greatest problems both physical and emotional.

 Last year, I attempted to taper down using the ten percent rule, so ten percent taken away each week until the weaning process was completed. As we know.... see my last blog, this didn't work and the consequences were both serious and dire. The subsequent blog I wrote after also caused some controversy and unfortunately I didn't choose my words very carefully (so sorry). Needless to say I've had to resume taking them, and I've have had a full and complete recovery since I'm happy to say.

After this last setback, I went on to research anti-depressants extensively and even approached senior mental healthcare professionals in the hope that they could help me shed some light on why, despite a hysterectomy, I still was unable to be fully cured and medication free. The explanation they gave me seemed to be the best I can find,and I will share it with you now if I may.

Once you use SSRI medication, and particularly if you use them LONGTERM, the brain itself finds it almost impossible to then produce its own Serotonin. It seems to 'forget' how to do it and this increases ten fold  if you've used them for more than 5 years.( I've been on them for 30).

 The best way to describe it, and the easiest way to understand it is.... if you don't use a muscle in the body for many many years it will gradually waste away and become incompetent. This is known as atrophy and can happen anywhere in the body..... a kind of 'use it or lose it philosophy'.

 Somehow, this happens to the pathways in the brain...... they have now become so used to the action of the SSRI, that the normal uptake of serotonin is lost, if that makes sense.  The brain has made a new pathway in serotonin and dopamine production, and it seems that it is very difficult to reverse that processing. Although people have managed to discontinue after many years usage, it is both a long and arduous journey which can take many months or even years......(I'm trying to keep it real). The physical symptoms of withdrawal can often leave a discontinuation syndrome which in itself can be extremely debilitating and is often the reason for going back on them.

 Within my own illness,it could also mean that as well as a PMDD disorder, I had trouble regulating and producing Serotonin from the very beginning. This would explain several generations of depressive disorders in my family, as well as hormonal related illness. Quite often there can be several different illnesses running alongside each other, which I accept is not my original stance when I wrote I blame the Hormones.(sorry again).

What came first of course is anybodies guess and there are no easy answers! The low serotonin could have effected the hormones somehow, the hormones could have effected the serotonin somehow??
I really don't know.....and I'm just trying to survive.

When I think of my grandmothers generation, I'm so grateful that I came along when the management of depression was by medication, and that it was effective. I'm so happy that I've been able to cope on a daily basis, and I have the luxury of living when it is denied to so many. I'm also grateful to the skills of our scientists who have freed us from the barbaric lobotomy, and the institutionalisation of human beings that are sick. I'm delighted too that we are researching how hormones themselves can destabilise the mind and mimic mental illness. I also accept, that medication isn't perfect, it is flawed, but I also know that we are too,,,,,, we are all imperfect somehow.

If one can find a cure that is homeopathic, holistic, scientific or otherwise, then so be it. I would have sold my own soul if it meant I stayed alive and I still stand by my firmly held belief, that my hysterectomy was the best thing that happened to me. I  still have to take medication, but does that matter as long as I'm well?

 What matters more is that I'm transparent in my journey and honest, even if that means I have to back track on my original convictions.

 Fearne Cottons honesty in her article shines like a beacon giving hope and clarity to anyone suffering from depression. In particular, those that are nervous and stigmatised by the use of medication, will be empowered that a high profile women has found courage, and has spoken out.

What doesn't help is the generalisation and negativity surrounding anti-depressants, when in fact, they have saved so many. All too often we focus on the downside of the SSRi  when in fact millions are still alive because of them (myself included). Concentrating on the bad side of psychiatric medication, stops people getting the help they need, which in itself is both unnecessary and quite dangerous if  medication is urgently needed. Balance is the key,showing both the good and the bad,and also deciphering whether they are genuinely needed. Certainly if you are suffering from suicidal idealisation, then you should seek professional intervention as a matter of urgency.

I look forward to a time in the future when we will all be free of illness and no longer need any medication, but until that day comes, we must all do the best we can.

I blame the Hormones can be downloaded onto Kindle, smartphone, I pad, tablet or PC. Please leave a review and please reach out to me if you need to.

Peace and love, Suzi x