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[Tempest]

Sodium valproate for migraines, 50mcg estradot to keep HRT as stable as possible. Hormone fluctuations are my huge challenge! If this works, an implant is likely.

I have a SPECT DaT scan to check my dopamine levels scheduled with my Neuro. for the 8th August. Phew!

Wish me luck......if this lot fails, it's venlafaxine or bust to 'control' my ongoing severe surgical meno. symptoms which have magnified a hundred fold in this weather. 

It's been 3 years, 4 months since my oophorectomy and it's been an ongoing challenge AND a nightmare! xxxx

[Tempest]

You are so very kind, Jeaniewigs! Thank you so much. 😊 xxxx

[Otes73]

Hello Tempest!

How are you finding the Estrodot? I think I would like the implant to keep my levels stable!

Wishing you luck with your appointment in August, thinking of you.   

Xx

[Tempest]

Oh bless you, Otes! Thank you! Well all I can say about the Estradot so far is that it sticks - lol! It really hasn't had a chance to do much yet but I did try it very briefly before recently but coincidentally, (I hope) I got hit with a MASSIVE migraine so stopped it ahead of further advice from my neuro., which I now have.

More to the point, how are you doing Otes?

This is catastrophic weather for migraineurs - this summer has been lousy for us so if there are any other sufferers here, i'd love to hear how you've been affected and how you're coping. xxxx

[Tempest]

Oops - forgot to say! Implants would certainly be an option available to you as a surmeno. lady, Otes. I'll PM you to check where you are, and I can give you details of the NHS clinics that insert implants so that you can discuss a referral with your GP. Btw - there a lot of us over at Instagram nowadays sharing tips/support, so you can join us there too! xxxx

[Kathleen]

Hello Tempest.

Thank you so much for the update, it's always good to be reminded of where other women are in their journey.

I agree with Jeaniewigs, your fighting spirit does you credit and if there's any justice in the world you will be rewarded with good health and happy hormones!

Sorry to be nosey but why are you having your dopamine levels checked? Is it connected to your migraines or MS diagnosis?

I hope your appointment goes well next month and look forward to reading more of your story.

Take care.

K.

[Mary G]

Good luck Tempest.  I hope you can have the oestrogen implant because I think it would be a good option for you.  It would mean you get a steady dose of oestrogen and avoid the dips that can cause migraines. 

I didn't realise you suffered with migraines, is this something recent or have you always had them?  I can't remember whether you had a full hysterectomy or just the ovaries removed and need progesterone. 

[Tempest]

Thank you, Mary G! You're very kind.😊 I had a TAH at 36, and BSO at 46. The migraines were diagnosed last year after my old GP previously insisting that my symptoms were psychosomatic and sending me to a psychiatrist, where I was trialled on all manner of horrid stuff that didn't work. 

Eventually, it was my old gynaecologist who I have been seeing regularly for over 10 years who was dismayed at the mess I was in, and who made a tertiary referral to his colleague at endocrinology. He in turn then referred me to neurology, where I underwent MRI and lumbar puncture and countless other neuro. exams. I was then diagnosed with RR MS, and a finding on the MRI was also a pattern of white matter hypoperfusion consistant with chronic migraine! Bingo! So my neuro. thinks I am actually suffering from daily migraine activity - hence why we've had to go straight to a preventative rather than using tryptans.

In my case, my neuro. believes that the sudden huge drop in estrogen after my surgery either caused or exacerbated a previously mild migraine condition. I am very, very angry that I was sent home and expected to manage without any ERT at all for no good reason after my surgery, and that this is the damage it may have done. I now, of course, struggle to get my body and brain to accept estrogen at all!

This is why recently I've been throwing myself into the 'surmeno movement' which seems to be growing rapidly. I cannot begin to tell you how many women - often young - who are sent home with no ERT and expected to get on with it!!

I am trying to assist a young woman of only 26 at the moment who had surgery for endometriosis and is now in full surgical menopause. She was not given any information before agreeing to the surgery on the impact of surgical menopause or the long term consequences and has been trying to manage with a 100mcg patch which clearly isn't working. Her GP has been left responsible for her 'aftercare'. I've passed on information about Nick Panay's clinic at Chelsea & Westminster to her as she's in SE England and urged her to insist on a referral as a matter of urgency.

It really is a disgrace - I cannot believe young women are having these surgeries and being left in in a lifelong post menopausal state with little or no help!

Sorry this has turned into a long winded post Mary G - but I know you're very passionate about this sort of thing too. xxxx

[CLKD]

I am passionate too!  Years ago one was referred to the Consultant from the GP and given advice.  This was also sent to the GP via a letter for discussion by the patient.  Then what ever option was decided upon was either sorted by the GP or back into Hospital.  No referral back to the GP directly from surgery, one went back to the Consultant concerned until one was fit for discharge!

Now it seems that a patient is sent back to the GP ASAP  ! with little information.  I think that this is negligent in the widest sense.

Tnks for the update.  Have you written the book yet ;-).

[Otes73]

Thankyou Tempest,

I'll message you now the area I live and you can give me your instagram name!!

Big hugs
Xx

[Tempest]

It's turned into a nightmare, CLKD! I have had a few women tell me that they've not even had a post op. follow up following their hysterectomy - just go back to your GP if you have any problems!!! I mean - THIS IS MAJOR SURGERY!!!! It's unreal, isn't it??? I even read a journalist's newspaper article regarding her TAH/BSO where she was discharged with no follow up. Victoria Lambert, I believe it was.

I'm not sure the world is ready for that level of misery memoir yet, CLKD!

But if ever I DO write a book, it will be about the truth of female castration and how women are STILL being treated appallingly due to 'accident of hormones'. It seems we haven't come any distance at all from the cliche of 'the madwoman in the attic'. xxxx

[Tempest]

Thank you, Kathleen! You're so kind and thoughtful.

No - not nosey at all! It was during my neuro. exam that my neurologist became concerned about my unilateral tremor (right hand only). I think to be on the safe side, he's checking things out. I'm aware that these scans are useful for diagnosing Parkinson's, but I think mine is just to dot the i's and cross the t's to make sure he's not missing anything. It's most likely a case of essential tremor. I think....I hope! xxxx

[Tempest]

Thank you, Otes! Will do!😊 xxxx

[Mary G]

Tempest, that is terrible and I am furious.  As usual, it is a lack of care and non-joined up thinking and as you say, leaving a young woman without oestrogen has serious consequences.  There definitely seems to be a link between low oestrogen and the onset of migraines or in some cases, worsening of migraines and this is overlooked time and time again.

On a positive note, if you can get enough oestrogen into your system from now on, hopefully you can eradicate the migraines and will not suffer any permanent damage. 

My own story is not as impacting as yours but I too started to suffer with migraines once my oestrogen levels dropped dramatically.  I had a sudden menopause and developed silent migraines (aura without headache) and wondered what on earth was going on.  After numerous consultations, it turned out that my migraines are triggered by low oestrogen like yourself but in conjunction with synthetic/high doses of Utrogestan.  I control them with high doses of oestrogen and a tiny amount of progesterone. 

I'm really sorry that you have been put through this but let's hope you can get your oestrogen levels up to a reasonable level and it does the trick.  At least you will not have to take progesterone which is a nightmare for many women with migraines.

[Shadyglade]

Hi Tempest,

I have to say that the science involved in all this is way, way beyond me but best of luck anyway. Sounds like you have explored all the options.

As for the tremor that can be a caused by anxiety and or adrenal fatigue. Just a thought.

Fingers crossed for you.