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[Ollie]

Hi all. New to forum. Not got the hang of where to post yet so apologies if I've got this wrong.

.I was diagnosed with breast cancer 2018 at age 49. 2 yes of tamoxifen then deemed menopausal age 51 so changed to anastrazole which I will have been on for 5 years this October. Due to stop then. I'm now 56.

Hot flushes for past 5 years and naively thought I was getting through menopause well.

Last January noticed a slight impending doom feeling each time before I flushed but never lasted longer than 30-40 seconds.

 May 2024, started waking with horrible jitters and feelings of anxiety though not worried about anything. These episodes intensified so much over the course of last summer that I was jittery and anxious the whole day and unable to sleep more than an hour at night. The hot sweats went through the roof, both in frequency and intensity. Developed tinnitus that is persistent ringing.

Can't take HRT so ended up on duloxetine 60mg which put me into urinary retention. Told to reduce it to 30mg. Told things get worse before they get better. Things definitely got worse.

Had a month (November) when things seemed to settle and again I naively thought I'd made it through. All symptoms came back with a vengeance in December but now also had nausea and morning (only ever morning!) diarrhoea after breakfast.

February things settled down then back in March but less severe. Had bloods done privately as GP won't check hormones.

Oestrogen <19. Progesterone 1. FSH. 136. LH 57.7. it also picked up cortisol of 790 and prolactin 1790. Had scans and thankfully no adrenal or pituitary tumor. Told its most likely menopause anxiety and stress.

Symptoms continue. low level on good days but I go through cycles of heightened symptoms. Trying to track them but seems erratic pattern. I'm still on duloxetine 30mg.

I've had days with only 6 hot flushes and then days with 67 (counted) intense hot flushes.

I do mindfulness, exercise, acupuncture, healthy diet, no smoking no alcohol no caffeine. Nothing helps

Can anyone relate to this? I'm worried it will never end (on bad days) and then hopefully I'm almost there (good days). I'm normally a very relaxed, practical person. I don't recognise myself anymore.

Grateful for all and any help you ladies can offer.
Thank you for being here.

[Winterangel]

Hi Ollie. I’m so sorry that you’re going through this. I can relate!

I was suffering the same issues. I’m now on HRT and Citalopram and I only very occasionally get any anxiety now. I think there are other drugs you can’t take for menopause symptoms if you can’t take HRT. I’m sure someone will be along to advise on those. Have you thought about other medication for anxiety; citalopram, escitalopram etc? I have no side effects and it works for me.

I hope you get some relief soon.

[Ollie]

Thanks winterangel.
I asked GP about other meds to try and told to 'wait and see' if it settles first. It's been a year and although symptoms are lessening in severity and frequency, I'm still not me anymore. Gp said I might be coming to the end of the symptoms being so severe and not worth withdrawal symptoms from duloxetine and symptoms from starting new drug (citalopram etc). I sort of agree with that (on a good day) but then on a bad spell, feel I need to do something different than what I am doing right now.

[CLKD]

Afternoon - Tamoxifen almost killed me  and as I hadn't felt ill throughout diagnosis, surgery and radiation treatment, I stopped it.  That was in June 1995. 

Anxiety can be caused by the waking hormone, cortisol - my GP prescribed Propranolol to take at night to ease the early morning surges which left me terrified.  .

Valium has been successful for me during the 1990s: on an as necessary basis: then changed to as Escitalopram 10mg night and morning.  I have an emergency anti-anxiety tablet for when anxiety floors me.

Tinnitus - tick!  From behind my head ........

No medication should cause retention!  Who told U that U R unable to take HRT?  there are many clinicians world wide who disagree and suggest that quality of life is more important than worrying about cancer returning.  If HRT is so dangerous to women then we should be offered double mastectomy at the age of 50!

How much would trying HRT worry U?  After all women may not require treatment for many years, whereas others take it for ever. 

[CLKD]

MayB keeping a mood/food/symptom diary would be useful?  The Change - does what it says on the tin, my periods waxed and waned for several years B4 disappearing in 2002.  Then I had a few months of itchiness as oestrogen levels dropped as well as cold flushes after my evening bath  .  Oh and the itching on my instep once socks were removed at night, I would wake with one rough heel scratching the opposite instep!

Peri-menopause can begin years B4 the final period = menopause.  Although 'they' like to suggest 51 as the mean age for periods stopping this really is quite wide of the mark for most of us!

[Pbjb]

Hi Ollie

Welcome to the forum.

I’m pretty much in the same boat as you. Breast cancer at 46, tamoxifen for 5 years. Hoping to change to anastrozole end of this year. I’m now definitely going through a full on menopause. I had ABSOLUTELY no idea I’d be effected like this. I think that I’ve also decided/maybe can’t take HRT. That’s because of consultant advice and because I want to find a way of getting through this without HRT if at all possible.

So, yes, I get the impending doom, panic, rapid heart rate before hot flushes. Again some days/weeks/months are worse. They follow no pattern that I can discern.

I have almost panic attacks as I wake up. I call them “my get up and go moments”. I’m trying desperately for a positive spin. But sometimes I’m completely polarized by terror, but what terror I have no idea!?!?! And I have nothing really to worry about. The tension can last all day. I feel it in my head, neck, back and particularly my chest. So heavy especially when I drive and I LOVE driving so what’s that all about.

I also do all the good/clean living things you mention. Maybe if we didn’t do these things we’d be worse!?!?

I can so relate about “not being me anymore”. I’m different to everyone as I’m dealing with such discomfort and basically want to be on my own.

Just to say I take a Magnesium complex because apparently that’s good for anxiety etc.

I can’t tell you how many times I went to the doctor/consultant/nurse/A&E about all my symptoms. I had blood tests, scans, ultrasounds, MRIs, X-rays, camera inside, up and down!!! There is nothing wrong! Huh?

I too have good days now, thank heavens, but when I have a bad day it’s awful and I completely forget  how it was to feel good just the day before.

All the very best with it, Ollie. You are not alone. Keep talking, it really helps to know you’re not going mad.

 

[CLKD]

Hi Pbjb - why do U have to change from Tamoxifen?  Do U have regular womb checks etc.?

I don't know why anxiety increases during peri  but in hindsight that was were I was when suddenly hit by more panic than I knew what to do with!

Menopause is natural - but can throw up some awful symptoms!

[Pbjb]

Hi CLKD
I don't think I "have to" change from Tamoxifen, but apparently Anastrozole is for post menopausal women.  I need to contact my consultant to see what he thinks.  Your phrase "hit by more panic than I knew what to do with" is a very description of the feeling 
Thank you for your kind support CLKD, it's much appreciated.
Have a lovely day.