Hello everyone, I heard about this site on Radio 4 this morning and decided to investigate. My story is a long one so I hope you don't lose the will to live whilst reading it!
I was labelled perimenopausal 14 years ago at the age of 42, with the following symptoms; sudden development of severe pure menstrual migraine, menstrual cycle suddenly changing from 28 days to 20/21, very light periods lasting just a day or two, dry vagina, night sweats, the beginning of slight urinary leakage. My mother had gone through menopause at 45 and my granny at 39, so two doctors suggested that mine might be early too. Hah, that was not to be!
My menstrual cycles became more erratic; dancing around between 12 – 67 days, though the mode was probably 21 and the longest ones only during the past year. All pattern was lost, I could have an 18 day cycle, followed by a 45, followed by a 21, followed by a 30 followed by a 17. Bleeding has remained medium or light, never heavy and flooding or spotting. The only break -through bleeds I have ever experienced are very slight shows at ovulation with twinges, these I've had most of my life. The only certainty was that the pesky period would come.
The migraines have been my biggest problem, starting as pure menstrual migraines, i.e. around my period, and gradually becoming chronic, more than 15 days each month. The early years with these were horrendous and my GP tried every conceivable medication, natural remedy and alternative treatment. Worst month ever was 24 days in bed. In recent years, though very frequent, the pain has most definitely reduced and vomiting has stopped. I still do have my nightmare cycles, which tend to be the very short ones. The right medication for treating menstrual migraine has helped.
I have seen brilliant hormone, migraine and neurology specialists, Prof Anne Macgregor, Nick Panay and a number of others and have taken advice from other leaders in their fields. I have tried virtually everything possible to help resolve my problem. Essentially, I am, and have always been, exceptionally sensitive to hormone change. I had acutely regular 28 day cycles (up until 14 years ago!), obvious signs of ovulation, severe period pains and pms (though never mood swings), pregnant at first try with both children etc. knew I was pregnant within days of conception. I have learnt to read my body like a book as it reacts like litmus paper to change. I could never take the contraceptive pill: I tried a number of them with horrible side effects. A stint of HRT was a disaster, resulting in constant migraine and lots of other nasty side effects. It also was unable to suppress my natural cycle so I had two cycles going on each month. Any attempted manipulation of my hormone levels appears to cause problems.
Migraine specialists strongly advised against hysterectomy or oophorectomy, as it is believed it would exacerbate the migraine still further: neurologists suggested these procedures. Hormone specialists pushed me along that route with chemical hysterectomy - Gonadotropin analogue with add back oestrogen- to save my bones, but decided against it, as again they were concerned it would exacerbate the migraine. It has been strongly advised that I have to go into a natural menopause, which sadly is a hell of a time coming! It is felt that the migraine will improve once through, if the menopause comes naturally. This body just does not want to give up though!
It's been like living on a roller coaster with my oestrogen levels through the roof, sometimes for months at a time before plummeting suddenly and slapping me against a brick wall. All these highs and lows bring their own set of problems! I must be anovulatory much of the time now as my eggs are positive dinosaurs; therefore my oestrogen must be regularly unopposed. Latest scans show some thickening of the uterus, possibly polyps, which I'm waiting to have investigated and removed.
Normally, with the few long cycles I've had, the migraines have been easier but this cycle is an exception. I had a major crash of oestrogen on the 15th Dec and my period started on the 17th Dec and I haven't had a period since. It's 111 days today (whoop, whoop!) and whilst the first few months were plagued with very frequent migraines, things have slightly calmed over the past few weeks.
Hot flushes started, very suddenly, three weeks ago and I am getting them probably every 15/20 minutes. They seem to be gradually increasing in intensity. The night sweats that stopped about five years ago have also started again, waking me about 4/5 times a night. I'm pretty exhausted it has to be said but these new signs of change are making me want to dance the fandango (naked with this heat!) because I see it as just one step closer to this wretched thing ending! Call me strange (or stupid) but I remain ever positive that each period will be my last.
I thank goodness that I am a glass half full sort of person as this really has been a roller coaster to hell. It will be truly wonderful to get my life back, though ha ha, knowing my sensitivity to hormone change I'll grow a full beard and develop male pattern baldness. (My hair has definitely thinned already, though I had really thick hair, thank God!).
I have researched the perimenopause, menopause and menstrual migraine extensively over the years using medic friends to access lots of inaccessible info and yet there is so little comprehensive detail available worldwide. Few wide ranging studies have been done but I've thoroughly studied those that have. What is clear is that everyone is different, so when I've read about ‘the average experience' in studies and ‘what to expect' and it has differed so dramatically to my own experience, it's easy to feel occasionally despondent and adrift. It would be great to read that other people have or are going through this anomaly too. (Not that I would wish my experience on anyone, honestly!)
We all of us experience this period of change differently so trying sometimes to reassure yourself that what you are experiencing is normal, is tricky and frustrating. Some of my migraine symptoms are so bizarre that I have questioned my sanity: this is when the reassurance of a specialist is such a relief. (“Oh no, that's quite common actuallyâ€). It is great to find this website and to have access to other people who are experiencing similar problems and gaining support from each other. I am the only one of all of my friends still not through. I look forward to speaking with you all.
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Topic: New here, nearly 57 with perimenopausal and migraine journey to hell! (Read 8343 times)