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[Tempest]

Oh. My. God!!!!!! As you can see, I posted on here fine about 9.50 am. By 10.30, I felt absolutely AWFUL!!! Huge feeling of terror - not an adrenal surge as such but just unbelievable FEAR. I tried to stand up from my chair, and the jelly legs were astronomical! What the hell is this all about?

I'm getting this progressively every day - and then it settles about midday. I'm kinda ok when I get up in the morning, just a bit jittery which I get anyway but the above happens approximately 45 minutes after I take my tablet each day! I'm wondering if you're reading this Warwick if this is what you're experiencing? At first I thought it was because I needed my dose, but I observed this morning that it's actually AFTER I take my dose. Absolutely hellish!!!

[coldethyl]

Forgive me for asking Tempest, but the combo of chemo brain and meno brain and I can't remember who I am some days let alone any information from on here, but why are you taking HRT? I seem to recall you suffering pre HRT with mental health issues but these don't seem to have been resolved only compounded by various HRT preparations. I'm wondering if you might not have reached some sort of hormonal equilibrium post BSO ( as in settled into menopause ) eventually which might have been preferable to the swings that you appear to experience when external hormones are introduced. I can only go by my own experiences post hysterectomy but the terrible hormonal swings I had prior to it seem to have settled down and the other stuff like hot flushes haven't got any worse yet and tbh I'd take them over the suicidal agitation any day.
I know your psychiatrist was keen to look at alternative psychiatric medication and it may be , and this is just me talking off top of my head, that what started as a hormonal issue has triggered or brought to surface a lot of other issues that HRT isn't going to address. I know you have had a traumatic time and suspect that your anxiety switch has just got stuck on high alert and more support on that side of things like CBT! psychotherapy, mindfulness etc might have a better chance of settling your anxiety than just the HRT. I'm sure you have thought all of this already but just wanted to say I think of you as I know exactly what that feeling of agitation and rising anxiety is like - be kind to yourself and try not to look inward all the time as I found as soon as I started scanning myself for anxiety etc it was only too happy to wave back. Xxx

[Tempest]

Do you know Coldethyl, I'm sitting here right now with Hubby and we're having EXACTLY this conversation! I cannot thank you enough for reaching out to me and your timing is uncanny - also, I can't believe your incredible kindness when you have so many things going on in your own life. Truly - I'm really touched and so grateful! I was mulling over both your posts in the surgical menopause threads yesterday.......

We both (Hubby and I) think you're right. I've been trying to do this HRT thing since April last year and it's been hell to be honest! Perimenopause nearly finished me off, and after surgery just like you everything just evened out......I didn't even have hot flushes but with every subsequent change in HRT over the last 9 months, they have been off and on. And my anxiety has been up and down too! It went away almost completely after my surgery.

Hubby and I chatted yesterday too and I see my Psychiatrist next week. I'm going to to ask him for support to help me to stop the HRT - and embrace what he has offered me to help me to move forward. I can't go on like this - HRT for me isn't the answer! I know it is for many, but not for me. Not now. As you so rightly say, I had reached a state of equilibrium before and the last 9 months or so have been lost to me. I'm happy to use vaginal estrogen if I need it as it isn't systemic, and therefore cannot mess with my mind.

Thank you so very, very much Coldethyl - for being a voice of reason. I'm am so truly and utterly grateful to you! Much love. xxxxx

[Menomale]

Hi Tempest and coldethyl,

That's really interesting. I have been off HRT for some days after the oestrogen patch had vanished. I am scheduled for exams next week and decided to take my gynae's advice to stop HRT until the results arrive (she is concerned about my polyps). I've been feeling pretty well compared to the days on Estradot and was wondering during last weekend that maybe my symptoms could be due to fluctuating oestrogen levels.
 

[Annie0710]

Coldethyl I think you make a lot of sense

Tempest and I have broached this subject before briefly together and I've often wondered if I should've stopped hrt a while ago as oestrogen alone just causes me problems.  So far Tibilone seems to be agreeeing with me but in the event it doesn't, I'm inclined to not try any others

Xx

[warwick01]

Suzanne - your a star, thank you so much for giving us TT newbies the strength and encouragement to carry on. There has been times like yesterday when I thought Tibolone wasn't suiting me. It's such a roller coaster ride

Update day 34

Well it's been a great day...... yipee compared to a rubbish day yesterday. Been shopping, Visited Mother in Law done lots of things around the house. Yesterday didn't and couldn't get off the sofa as I felt so rubbish.

Improvements with taking Tibolone
Lower BP
Less bloated
no spacey head
less agitated
mood better
periodic more energy
no night sweats
slight improvement in Libido.
headaches settled
nausea settled

Negatives

Morning Anxiety (settles after lunch)
occasional flush/hot sweats
jelly legs
broken nights sleep
periodic dizziness (worse in mornings)
some adrenalin surges (had these pre HRT)
a few odd spots
still avoiding going out due to jelly legs/dizziness

Overall, I can see improvements (I really pray it carries on) as Suzanne says after 8 weeks things should start to settle. I do agree with Suzanne the first 4 weeks were pretty bab

Wxx

[warwick01]

Tempest

Yes Yes Yes I agree feel really strange after taking tablet. After 2 hours seems to settle but I think that this is improving. First 4 weeks shhhhhhocking

Hope your feeling better now. Are you going to carry on or stop Tibolone ?? If to you and everyone try to get over the 4 week mark if possible!

Wx

[Tempest]

Hi, Warwick! I'm so glad you feel so much better!!! I really don't know if I will continue the Tibolone.....I will review at my appointment with the Psychiatrist next week.

To be HONEST, and I absolutely sincerely am - the things you report in both lists (positives and negatives) are pretty much what I felt like on NO HRT at all for the first 6 months following my surgery, but then a LOT of it settled (except I didn't have flushes at all, and just the occasional night sweats. These settled too over time). Can I also say that the joint pains I experienced settled too - only flaring in the very damp, cold Scottish winter weather.

I absolutely don't want to rain on your parade, but I'm beginning to wonder if the improvements you are seeing is because you've lowered your estrogen considerably (Tibolone is weakly estrogenic, as reported in the studies. Whereas 3 pumps of estrogel is medium/high dose). Also too much estrogen actually dampens libido.....Again, it's that question of balance I think....

These are just my musings out loud (and my experience of taking no HRT at all). I personally felt BETTER the first few days after stopping the gel (apart from my fear of the abrupt 'hormone crash' - but for me once this passes, its over in about 24 - 48 hours but at the time IT IS flipping scary)!

I hope Tibolone is wonderful for you though. But for me, I have to give it some serious thought as mentally I can't handle fluctuations at all. I also noted that Suzanne moved from a higher dose HRT to Tibolone too, but again I'm just musing out loud and comparing my experiences of being on no HRT at all for some considerable time.

Sending you hugs and long may you continue to feel great! xxxxxx

[warwick01]

Hi Tempest - interesting post.

Over the last few years I have tried various low dose HRT such as Kliovance and reducing oestrogel however to no avail. With Tibolone I have had some ups and downs (as you know) but I have had a glimpse of the real ME on Tibolone which I havn't seen or felt for 7 years so will keep holding on tight to this roller coaster....

We know our bodies Tempest and you must do what feels right for you. I will continue to update and will read your posts with interest

Huggs Wxx

[coldethyl]

Do you know Coldethyl, I'm sitting here right now with Hubby and we're having EXACTLY this conversation! I cannot thank you enough for reaching out to me and your timing is uncanny - also, I can't believe your incredible kindness when you have so many things going on in your own life. Truly - I'm really touched and so grateful! I was mulling over both your posts in the surgical menopause threads yesterday.......

We both (Hubby and I) think you're right. I've been trying to do this HRT thing since April last year and it's been hell to be honest! Perimenopause nearly finished me off, and after surgery just like you everything just evened out......I didn't even have hot flushes but with every subsequent change in HRT over the last 9 months, they have been off and on. And my anxiety has been up and down too! It went away almost completely after my surgery.

Hubby and I chatted yesterday too and I see my Psychiatrist next week. I'm going to to ask him for support to help me to stop the HRT - and embrace what he has offered me to help me to move forward. I can't go on like this - HRT for me isn't the answer! I know it is for many, but not for me. Not now. As you so rightly say, I had reached a state of equilibrium before and the last 9 months or so have been lost to me. I'm happy to use vaginal estrogen if I need it as it isn't systemic, and therefore cannot mess with my mind.

Thank you so very, very much Coldethyl - for being a voice of reason. I'm am so truly and utterly grateful to you! Much love. xxxxx

Glad to be able to offer some thoughts. You were very kind to me pre op and people in general on here and elsewhere have been so kind since diagnosis that it's nice to be able to offer support in return. I hope that you can work sonething out with your healthcare team . I think what is important is that they are there for you in a regular and easily contactable basis and that they give you the means to support yourself in the longer term. I have always found that introducing anything that messed about with my hormones tricky to cope with - birth control pill made me fat or depressed, fertility drugs made me fat and weird etc so sometimes you just have to work with your body to heal your body without the help of  an easier fix ( which often turns out to be nothing of the sort anyway ) xxx

[Tempest]

Day 13...........

Well, today has certainly been much, much better than yesterday!!! Went to bed last night feeling utterly defeated, slept ok ish from about midnight until 6 am with just a bit of warmth which woke me up but nothing sweat lashing.

Mood has been very level today (so far) which is a very good thing as I was hobnobbing with a rather special person earlier today (Annie, you know to whom I refer)! 

On another good note, my blood pressure has now risen somewhat and is stable - it was very low for the last 12 days and this adds to the 'impending doom' feelings for me. I have always pre menopause erred on the side of low blood pressure which my GP keeps telling me is a good thing, but seriously - mine is LOW low a lot of the time since all this blasted meno. nightmare kicked off and it can make you feel like crap, but the GP has told me they don't treat this.

No joint pains at all today - and very minimal dizziness (see above re: blood pressure).

I'm probably doomed and this is part of the 'rollercoaster', but I'll take today as a good 'un. So I'll be sticking it out for a while longer (sorry about huge meltdown yesterday - you know how it is with me. I panic big time)!

Hope you are doing ok, Annie and Warwick. Hope the ears are continuing to improve (albeit slowly, Annie), and sorry to be a party pooper yesterday Warwick, will you forgive me? Hope you're out there today having another good day - and that the rotten jelly legs are away (hopefully for good)! xxxxx

[Annie0710]

Wow what a day to have a good day ?!!!! Sooooo happy for you Tempest

I'm ok, slept at 1.30am this morning so gained 1/2 hr lol

I've realised why my bowels are better (soz TMI) but I think there's magnesium in it.

Stiff (ish) joints still but otherwise I think ok.  Taking my tablet @11am these past 2 days and I don't seem to get the palpitations after so I'm sticking with that time for now. 

Anything else I think is ear related

Nothing is jumping out at me as pro or a con apart from above so I'm happy to have no bonuses if it means I get no negatives, I'll patiently wait to see if the bonuses occur xxx

[warwick01]

Hi Tempest

Good news you've had a better day. It is REALY a roller coaster ride but I have a good feeling it will work for all of us On reflection, the first 4 weeks were so bad and only for you lovely ladies esp Suzanne I would have jacked.....

I took my tablet at 12:00 noon today and find like you Tempest the worse of any side effects happen 45 mins after taking it, lasting a couple of hours. Its getting better each day.

Will update you tomorrow Wx

[Tempest]

Aww, Warwick! Yes - I'm afraid I overreact as I didn't expect it to be quite so up and down and it's scared we witless I have to admit after my previous track record with HRT......

You're absolutely right about the timing - completely! But I'm so heartened that for you it's getting better each day - that really IS wonderful news.

Much love to you, and thank you for putting up with my drama!

Hugs! xxxxx

[Suzanne1967]

Hello all 😉💗🙋

Reading through and I'm so happy to see some are getting a few good days

But sad a lot aren't

I m so glad I started this thread felt rather exposed when I did but I was DESPERATE ... and look at me now ! I feel human 😉...

Week 16

Confidence is back
I'm a nurse and I teach too we own a little care home  I don't do hands on anymore for medical and personal reasons as look after my son 24/7 he has Nf1 & significant needs ... but I went into work today and was like my old self ( from 7-8 years ago !) motivated +++++  teaching it was ace ! Ok it was only a couple of hours but I did it !

Sleep still find it hard to get off some nights 3 am but it's better

Anxiety 🤔...GONE !!
Tearfulness 🤔..GONE
headaches 🤔... GONE
infact mist things have just disappeared 🙋... along with my memory still 😂 But I embrace my Dora the fish brain it's fine !

like I've said random stuff every now and again gets me off guard just trying to catch me out but I'm like ..🏄‍♀️ Ride that wave ! It will pass

I cannot say how much mindfulness helps please try it

Please IF you can keep going honestly try to give it 12 weeks honestly I mean it as want you feel like I do now and as stated I was devastated thought my life had ended it's only on reflection his bad I was my life was over I Couldn't e en get out of bed some days 😰 I couldn't go out agrophobic I'm the opposite as chatty sociable etc but I just couldn't do it I couldn't even type a sentence my brain didn't signal to my hands ! I tried putting a document together 6 pages it took me half an hour to put it in order from page 1-6 it was like my brain had been taken over ! Along with my whole being x

Only bad thing is I could kill for chocolate 😂😂

So please please please keep going Annie Warwick tempest I can't remember all your names sorry 🤔😉

Love to all 💗💗💗💗😘🏄‍♀️🏄‍♀️🏄‍♀️