December 2008

Michelle's story reaches out to another sufferer who offers advice and welcome support

Dear Michelle

I read your message in this month's bulletin and felt compelled to respond.  Here is my story, which will show you that you are not alone!

Like you, I have PMDD. I am 26 years old and I have suffered with PMDD/severe PMS since I first started my periods when I was just 11 years old, although initially, I was totally unaware about what was happening to me and it wasn't until much later that I finally got an accurate diagnosis from a specialist when I was 25.

At my worst, I would say that the PMDD was affecting me about 2 weeks out of 4 which made life unbearable for those two weeks and then incredibly strained for the remaining two weeks of the month. There are numerous incidents of my being 'crazy' - basically it was me being violent, aggressive, unpredictable, hysterical, manic depressive and uncontrollable. I thought about suicide often and wanted to self-harm.

When I was younger, my 'unexplained' moods were a huge burden for my family. Although I didn't understand at the time that it was PMDD, I can remember quite clearly the events that took place - this ultimately ended up in my being expelled from school because of misbehaviour and aggression. My parents didn't really know what to do with me because they didn't understand what was wrong. They thought I was just an aggressive teenager. But I remember the feelings of PMDD and now I know that that is what I was suffering from. 

Treatment

Between the ages of 14 and 24 I had no symptoms of PMDD whatsoever. I was taking the 3-monthly contraceptive Depo Provera injection which I now know stopped all of my PMDD symptoms - my ovaries were shut down and it wasn't until I came off the injection at the age of 24 that I realised those same feelings and symptoms had returned. It took 2.5 years to get a proper diagnosis and in that time, my relationship disintegrated and ended quite dramatically - forcing a life change for me involving moving job, returning to live with my mum and ending a promising relationship. There are, however, problems with the injection. It is not suitable for everyone. The best part about it is the fact it stops your ovaries - when this happens - no more PMS symptoms. But, it takes around 11 months to regain fertility levels and as a young woman, I was concerned about this, which is the reason why I decided to come off them in the first place. Coming of the injection was pure Hell. Total misery. All the worst PMDD symptoms you can think of - I had them! But on it, I was 100% normal and didn't even consider any kind of mental health.

I am pleased to say, however, that I have found a manageable solution. I know that you said you had trouble with the pill but did you try the progesterone only pill? Its known as the mini-pill and the one I’m taking is called Cerezette. I use this at the same time as the herbal remedy 5HTP.  The one I use is called Happy Days; cheesey I know!  There are some other posts on the NAPS website that discuss 5HTP if you wanted to see what they say. My experience has been totally positive. Like you I was offered anti-depressants and I did end up taking an SSRI, Cytalopram, for about a year. But like you, I knew I wasn't depressed all of the time and it made my insomnia much worse. I came of this in June this year - had a traumatic 2-3 months coming off and then started the Happy Days 5HT (this also totally cured my insomnia).

I can honestly say that the combination of Cerezette and 5HTP has transformed my life. During my worst phase, I couldn't even contemplate studying. Work was incredibly difficult with me taking off time each month to hide from the world. I was lucky in that during my degree, I was on the injection with NO symptoms. But the injection can only be used in certain situations - I’m hoping to return to it once I’ve had children. The good news is, PMDD will disappear during pregnancy so at least that's 9 months to look forward to!

I achieved a 1st class honours degree in Contemporary History and a Commendation in my Law Conversion Degree. I went through 2.5 years of hell with PMDD but you can find a way to deal with it. I still have around 2-3 days per month where some of the symptoms return but I would say that because of the Happy Days and Pill, this is now 80% reduced allowing me to function and to continue with life without it having too much of an impact for those 3 days or so (it used to be 14 days of intense symptoms). I am trying to be open and honest about my condition but like you, I have faced prejudice and continue to fear prejudice from employment. But my approach is to stand up and be counted. I will challenge people's beliefs and misconceptions and explain to them more about the condition. I will not be ashamed any longer of something that is not my fault. I've spoken to all my friends and family and have explained - they now understand if I don’t call or speak to them for a couple of days per month or if I'm uncharacteristically bad tempered/angry/pessimistic/worried etc., etc., etc.

Advice/Help

You have done the right thing by contacting NAPS. Without them, I really would be in the psychiatric unit having gone insane. They can give you a list of specialists too which you should think about seeing if you haven't already. CBT Therapy can also help if you have panic attacks - I saw a hypnotist who taught me how to be more relaxed and I did find this useful. Also, seeing a regular counsellor can help you to deal with all the peripheral problems with having PMDD - I saw one to deal with the guilt I had from inflicting my condition on those closest to me.

If you need to chat to somebody who knows what you're talking about then please call! I was lucky, my aunt had PMS - although in her day she was told she had anxiety disorder and was basically told to shut up and deal with it, so it has been wonderful being able to talk to her about it and about our 'crazy' episodes - sometimes we even manage to laugh about them.

I hope this has been of some help!

Thanks.

Clare