Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Droopeydrawers]

Hi Night Owl I've been off hrt around 5 and a bit months now.Im doing better off it than I was on it think I touched on every known and unknown side effect while on it,I tried pills patches oestrogel even lenzetto spray and I suffered a variety of side effects that the consultants said couldn't happen or didn't usually happen but amazingly stopped when the hrt was stopped.initially I felt better almost immediately on hrt then the side effects kicked in so we'd change after a while and try another form but it just got worse each time.I got some sweats back after first stopping but nothing like id suffered previously.i now use a variety of coping strategies including eating healthy and eating only in a 12 hour window to rest the gut and digestion ,so breakfast at 8am and don't eat after 8pm, I exercise as much as I can in the fresh air although I can have my lazy days lol i use relaxation therapy and most importantly i make "me" time and ive learned to accept that I'm getting older now and don't expect to have the energy and sex life of my younger years, im 62 nearly not quite past it but realistic in my expectations.I actually hated the tostran and the effect it had on my parts and couldn't get off it quick enough but I accept that it's the bees knees for other ladies.I still use vagifem for VA that never goes away but can be managed.I like to think positive and say I'm through the worst but never say never.anyway try and plod away for another couple of months using any strategies you think will help and maybe itll ease off once your body adjusts a bit more.best of luck whatever you decide DD😘

[Night_Owl]

Thanks for input.

Bluebutterfly, thanks for info, I often wonder about my Mum not taking estrogen, whether she would have benefited as she had amongst other things, osteoporosis, heart disease and bowel cancer- but probably not from what has been experienced in your family.

Hurdity, thanks for suggestions - in the past even on low dose 25 patch and 12.5 for a few years too - I had endo thickening and had to take double dose Cyclogest, maybe there is some form of undiagnosed endometriosis connection although ... in my 30s I had a laparoscopy through the naval to investigate painful periods and possible endo, nothing conclusive was found.  Previously I think you suggested that maybe somehow my biochemistry processes/uptakes HRT in a different way which I think is probably true.

Unfortunately I was getting monster migs when on estrogen only, so couldn't even blame the progesterone - so a hyster wouldn't necessarily sort things, such a gamble.  This is to be discussed at next Clinic appointment.

A while back I asked the Clinic about Bazedoxifene, however it's not something they prescribe on its own and apparently Duavive is being phased out due to unpopularity.  I wouldn't take it on ethical grounds though, the horse pee thing really does bother me.

Ladybt, how awful to endure such pain in your face for 40 years, good grief!  Great that you have found relief after all these years, a true success story of how for some, HRT can be the magic bullet.

I still had migs on high dose oestrogen, medium, low, all of it - but now slightly less without any HRT, maybe I just have to hold on to that small encouragement for now.

I'm more than aware that I'm an impossible case to treat! - which is why I'm feeling right now it's the end of the line for HRT and I'll just have hope for some natural equilibrium and adrenal (hormonal) input with the passage of time. If not, it will be back to the drawing board again.

Thanks All for your thoughts and suggestions, I will re-read and mull things over.

xx

[Night_Owl]

Droopeydrawers (great name!)

Thanks for the encouraging post - I'm feeling some hope here that maybe it is possible to stay off.  Just possibly in another 3 months or so things may calm down. 

Whilst on HRT I had a suspected hiatal hernia and acid reflux and frequent nausea - that has all disappeared now and sometimes I have an appetite which I haven't had for many years - so for me there is some kind of digestive connection.  Who knows, maybe my liver is a bit happier.  Interesting what you say about eating only within 12 hour window.

[Droopeydrawers]

Ty Night Owl.
Yes very interesting as you say because the digestive issues were my biggest problem and ok I was suffering from hpylori but I honestly am convinced the hrt exasperated my digestive problems as the reflux and nausea and worst of all the red hot burning pain from my waist right up my back to my lungs and shoulders was truly awful.I stopped hrt that pain dissapeared over 2 days I restarted that pain resumed till I then stopped hrt completely.just because it may not be a common symptom doesent mean it should just be dismissed and I told the consultants that.Im going to see a nutritionist on Monday her names kate Arnold have a Google.I want my gut investigated further not just cameras shoved up or down and a diagnosis of ibs I want a definate diagnosis of my gut health and she does this she's tops in her field.ive also found Dr Rangan Chatterjee a breath of fresh air in his approach to patient care again have a Google hes an nhs doctor whos way ahead of the game.His books are well worth a read.Use every coping mechanism you can to try and get you through another month or two and you might be surprised at how the sweats are no longer as big an issue as previously and not as severe they're copable compared to the side effects of the meds for me anyway.good luck DD😙

[Droopeydrawers]

Hi Petrichor 
Sorry to hear about your trials with hrt and agree it has to be acknowledged it's not for everyone.I hope you manage to feel more comfortable on your regime you've chosen and I'm def much happier with what I'm doing now I guess if you feel you have some kind of balance then that's good enough, it certainly is for me.certain meds are not for everyone I have a long list on my medical notes of certain things I can't have it's just life we are all different as you know.Do try and stick with some kind of V.A treatment hormonal or otherwise as this needs to have continuity of care, it never goes away because of the lack of oestrogen in our bodies so keep on top of that to prevent other issues.good luck with your choices DD😚

[Droopeydrawers]

Hi stellajane.from my experience of this id say you will get a rough 3 months but it then tapered off for me.my sweats were so bad they were minutes apart at one stage and my blood seemed to bubble through my whole body and I suffered that for years so right now I'm easily able to cope with the occasional hottie I get.maybe once or twice a day last month
but most days now nothing.im 62 now and had hysterectomy 25 years ago so it's been easier on me than ladies who still have their parts but still difficult to deal with.i still had all the nasty things meno brings.anyway good luck and id plod away if I was you with the attitude that your nearly there it really does make the coping so much easier DD😘

[Night_Owl]

Hello Petrichor and welcome - thank you for taking the time to post and share your experience. 

Sorry to hear that you've had so many problems with estrogen HRT and it made things worse - which is the same conclusion I've now come to after many years of trying to find the right fit HRT: none and therefore no fluctuations is better.  However I am well post-meno now so presumably no natural background cycle going on - where are you on the meno journey?

Crikey, poor you having to be an in-patient *really do sympathise* - many times I've wanted to go to A&E during monster mig pain when I feel as if I'm going to die.

Is complex migraine similar to hemiplegic migraine? - mine have changed and mutated over the years, as a child when they first started and occasionally as an adult, I had the very scary stroke like hemi - I've experienced many different types eg. terrifying vertigo type too, neurologists have never been able to specifically label mine, as I get a range.

Recently I've found Buccastem M has helped as I always get 'gastric stasis', take it along with Aspirin x 3 in soda water - can't tolerate any mig meds or triptans - have an appointment in June to see yet another Neurologist.

I think for migraneurs - and women with other health conditions - the whole issue of prescribing HRT becomes way more complicated - we're in a sub-category.  Factor in progesterone intolerance and it's a sub-sub category!

For sure, there are some of us who definitely aren't 'the norm'  medics may say otherwise and try to prescribe regardless of this consideration.

Have you found any alternatives that give some relief from the sweats, etc?

I'm a regular reader of   migraine.com  - it makes me feel less alone with this awful condition.

[Droopeydrawers]

No ask away Petrichor.
It wasn't it was womb and cervix only.ovaries intact but last scan showed they shrivelled to nothing and consultant said that was good because it reduced any risk of ovarian cancer.DD😘

[CLKD]

Group 

[Ladybt28]

I think Hurdity's comment (quite a way up the page) about Duavive is interesting.  It is specifically designed for women who are progesterone intolerant and was licensed in August 17... I think... in the UK.
At least there is something now for our sub-sub category Night_owl.  It has been spoken of before on the forum but I haven't seen any posts from anyone actually taking it?   Anyone seen any?    I was offered it by my consultant as a sort of last resort ..if my current regime of gel and utro didn't work or caused really major problems, but luckily I am managing as I am.

I know it includes the (sometimes dreaded depending on your view..?) oestrogen produced by mares like Premarin or Prempak had in it, but I would be fascinated to find out how the combination works in the real world on real meno women with progesterone problems.  It may be that the combo cuts out the oestrogen problems as well?  Anyone know anything?

And yes Night_owl - 40 years for the left sided eye pain sounds horrendous but we all know here that when we have hormonal problems like that that cause us pain or discomfort long term, the body sort of gets used to it, (shouldn't really have to but there you go  ) and it is a level that sort of hangs around in the background, if you know what I mean??, either increasing to very bad and then dropping to low level annoying...its amazing the things us women put up with in our lives...if it were men suffering with this stuff, all these hormonal problems would have been cured years ago and not exist at all 

[CLKD]

I did a search - there are several threads.

[Ladybt28]

yes but is anyone actually on it and reporting how it is going?  Will have a look.

[Conolly]

Migraines started at c.9/10 years (start of puberty) then tailed off around 25 - returned severely when periods stopped at 44.  I was peri in late 30s but didn't realise, just felt ill all the time and didn't know why. 

The Meno Clinic have always maintained that the mig is due to low estrogen, however I feel it's more to do with fluctuation, would you agree ... afterall, I couldn't have had much estrogen as a 9 year old.  My poor Mum had mig up until she died at 83, although not as severely as mine.

(I've been using Vitamin E capsules and coconut oil for the VA).

Hello again Night_Owl,

I agree that oestrogen fluctuations worsen migraines. Migraine visual auras started when I was a toddler, migraine with full headache only after first period at 10 y/o and throughout my fertile life until recently, one year post-menopause, when they have calmed down. I do get the chronic headaches sometimes but they are far less debilitating than migraines.

I have noticed that my migraines have morphed into different patterns throughout my life, visual aura was replaced by abdominal aura in my mid 20's, tinnitus in my mid 30's (still have them) and in my mid 40's I could literally 'smell' chemicals and smoke when a migraine was brewing. A very complex brain condition.

In late perimenopause I had all of them randomly!

Interesting that Meno Clinic insists on oestrogen being low, all I have read up till now agree that fluctuation is the culprit.

Regarding coconut oil and vitamin E for VA, is it working?

Conolly X

[Night_Owl]

Please excuse my garbled replies - my brain just doesn't function.

Ladbybt, re: Duavive - last time I saw a Consultant at Chelsea & Westminster Meno Clinic, was told that Duavive is being discontinued - will check again at next appointment (in Feb) and post any further info about it.  Personally I would never take any form of conjugated oestrogen it's such a vile cruel practice, how they treat the mares - as is the dairy industry, factory farming etc etc.  Isn't transdermal always better than tablet too.  I did ask if Bazedoxifene could be prescribed separately to use with oestrogen patch, but it's not available.

Thanks Sparkle, glad to hear your migs have subsided, that must be a relief, do you take any alternatives?

Connolly, long term I've used coconut oil (make pessaries with it too) and Vit E capsules + Vagifem, sometimes Carlson Vit E pessaries - stopped the VF in the last 3 months and haven't noticed much difference so far, however I'm aware things could deteriorate in which case I'll go back to the VF twice weekly, although for me the absorption is systemic.  Probably likely due to thin vag walls but also likely to how my body uptakes any form of oestrogen - or any form of medication for that matter (med hyper-sensitivity).

I also get the weird thing of smelling cigarette smoke when there is none around at all - yes indeed migraine is a complex neurological condition and there is so much that the medics don't know about it.

Hopefully future generations will have better medication - and HRT.

Wonder what is happening with this new drug MLE4901

https://www.telegraph.co.uk/news/2018/03/14/menopause-drug-cuts-hot-flushes-just-three-days-research-finds/


For now, I'm going to plod and plod and hope that I can get to the other side of the river.

If anybody has any suggestions for alternatives - would be grateful to hear, although I probably need to be in the Alternatives Section of MM for that.

[Night_Owl]

ps:  Connolly, do you get the awful neck stiffness, - it's something I get most days and have seen numerous osteopaths, had acupuncture ...