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[Anjia]

Hi I have stopped Tibelone as the side affects were just to bad for me. I would have carried on but I have a lot going on at the moment elderly parents who relay on me so I could not afford to feel so wretched with dizzy spells,I am back on estrogen only and am feeling very hyper at the moment and its just a medium dose so now have to wait untill that settles! The tibelone did seem to make me feel calmer so maybe in the future I could try again but at 56 I doubt it x

[Annie0710]

Hi Warwick

As you know I am 1 week behind you so in my last few days of my 3rd month .  Sunday I had bad social anxiety and it knocked my confidence .  Monday awful palps but a quick cough sorted it (I didn't think to do it earlier yet I preach this method !)

Today I had a health check with the well woman nurse, who is thrilled with my bp and weight (I'm not !) she said I'm half stone lighter than last year but I joked I'm half stone heavier than Xmas.  Bp 110/70

Anyway she said the first 3 months (or thereabouts ) is the body suffering the transition from either nothing or a previous regime then the next 3 months is the body working out how it will utilise the Tibolone more, so she said make a verdict after 6 months whether this is for me or not, it followed by me saying I had another massive night sweat beginning of this week (only had a few since  Tibolone but more than I've had in years)

Of course we're all individual and know our limits of what we can and can't endure but thought I'd share what she said this afternoon

Take care xx

[warwick01]

Anjia - I can understand your reasons for stopping the Tibolone. Only for the improvement in Anxiety/agitation which affected my life terribly, causing agoraphobia and social anxiety I would have stopped due to side effects. Take care hun x

Annie - your comments have helped, it does make sense too. Having such a good week last week and now feel back to square one

I will keep going and update next week.

Take Care Wxx

[Tempest]

Your nurse is absolutely correct, Annie! I have just been informed that any change takes at least 3 'cycles' to register ( that includes coming off HRT - gulp)! If anyone is interested, my Consultant also tells me that it takes approximately 9 - 12 months for things to 'stabilse' when quitting HRT altogether, which is why a lot of ladies hurry back on to HRT as this can be a rough 9 - 12 months! Worth knowing though if any of you are considering coming off (and I hope Dancinggirl is reading this as it may help her - I know she has been off systemic HRT a while now).

Sending many hugs to you all! xxxx

[Annie0710]

Thank you Tempest and I love it when you pop in xxxxx

[warwick01]

Morning Ladies,

Update week 14 today.

Lets start with the positives:

Anxiety - so much better some days feel I'm back to 'normal'
No mood swings or low mood
No foggy brain
My get up and go is returning
hip pain is starting to improve but get the odd twinge that wakes me up
Sleeping well
No night sweats
No adrenalin surges
I don't wake with butterflies in my tummy like I used too most mornings.

Still some negatives:
Constipation really bad
a few flushes during the day from 10:00am (each lasts about 1 hour) it feels the tibolone may be running low as I take it at 5:00pm
still have some off balance episodes esp when I get out of the car to go into shops. Had this before when changing HRT regime and prior to HRT when peri hit me, this may be the reduction in esrogeon. Its the most upsetting of all symptoms as I feel I'm on a boat on rough sea, this is accompanied by the flushing.
Libido NOT returned in fact sex drive gone worse.Going to request some testogel
VA twinges (not too bad use 1/2 vegifem when required)

All in all going ok. Hoping the flushes and balance issue settles as these are worse for me. Looking back to those first few weeks, I can't believe how much better I feel As I need to feel well during the day, I may change the time I take my Tibolone to 9:00pm.

Wishing you all well Wxx

[warwick01]

Hi all

It appears to be going quiet on here, hoping you all continue to feel the benefits with or without Tibolone. I will update up until week 16 in the hope it helps anyone considering taking Tibolone.

Week 15 today.

Although there is a lot of improvements esp with mood I continue to have this bloody dizzy head which starts at the same time every day around 10:am it feels like I've been drinking, my balance is a bit wobbly and my eyes feel a little strange also feel I could faint. I'm sat here with what feels like my head muscles are constricted........ so strange as my anxiety is far better than it has been for years. I still have some flushes during the day too. No night sweats and sleeping well, even feeling a slight return in libido(only this week) my skin is dryer but that doesn't bother me its only the dizziness that unnerves me, I find it worse when I get out of the car (traveling)

It will be the 4 month mark next week and I am 70% better than the first 2 months

My question to anyone on Tibolone is have you experienced anything similar? and is there hope it will settle ??

Take Care and lots of hugs Wxx

[Annie0710]

Hi Warwick

I replied on the other Tib thread yesterday

I did half tablet last night and have felt a bit better today

Not sure whether it's palpitations in general or new generalised anxiety (how the hell do you know? As palps give a jittery nervous feeling )

Still getting some night sweats but not bothered by them really but enjoying this energy that's suddenly appeared (long may this last) x

[warwick01]

Annie

If you cam manage on half tablet then that can only be better. I was thinking the same re half tablet but as I'm still getting hot flushes through the day so wonder if Tibolone isn't strong enough..

Like you - just want some quality of life symptom free.

Take Care Hun Wxx

[Annie0710]

It's still trial and error though isn't it ?

The things I'd like to vanish more than anything is these palpitations and social anxiety, otherwise I'll have to go to doc and see about getting some anxiety meds :-( x

[warwick01]

Annie,

I'm with you on that. I will be seeing my Doctor on Tuesday with a view I may need to change this HRT. I appreciate Tibolone will not fix everything however the dizziness I'm getting every day is crippling and stopping going out. It's such a shame because my mood is so much better.

I think the palpitations are the root cause of your anxiety as the dizziness is with me.

I would expect by 4 months, I should be feeling better

Take Care Wxx

[Annie0710]

Good luck at Drs Warwick

I'm just so sad I can't have beta blockers and haven't ever been on anxiety meds before so a bit worried that I'd be slower mentally at my job x

[Tempest]

You are wee souls, both!

I thought I'd pop by to see how you were doing. TBH I found Tibolone to be very weird, but as you know I have other issues too.

I used to get the same thing with dizziness as you, Warwick. I felt it took the 'edge' off anxiety at first but then caused more because of the dizziness, and then the flamin' dark depression hit. I think poor Joesmum was heading the same way, so she stopped it too.

On a positive note Warwick, if you do change HRT at least this time you can work up gradually as Tibolone is very weak - maybe start with a 25mcg patch or 1 pump of gel at first as you may not need too much estrogen now. For me, I found too much E caused a lot of anxiety and jitteriness which was awful.

Annie, my social anxiety is no different off HRT! For me this is something that has become deeply embedded from my peri years I think. I'm working on that with my psychiatrist and as you know I'm on medication for my other mental health issues which can help with this too.

Sending you so many hugs! xxxxx

[Annie0710]

Hi Tempest!

Love you popping in!
Yes I'll have to see gp about it, I'm much more open to OH about it although I can't explain it well.  I mean what honestly is scary about going down the pub ? It's not even like I pay the bar bill and worry about the cost lol

It's that fear of being looked at and judged I think (I really don't know !) x

[Blakeygray]

I've just started my 6th box so am roughly day 143 or week 20 and I'm ok.  Like I mentioned before or on the other thread, all my (menopausal) issues are gone, yet I still can't believe it and expect the wheels to fall off any day now.

So if there is a negative, it's that I'm convinced this is short lived and I'm just waiting for something bad to happen. Pathetic I know.

I do feel for those of us who are still struggling yet persevering with Tibolone. We are so individually finely tuned,  it'd  be a bloody miracle if one pill worked for us all.