Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Night_Owl on January 31, 2019, 11:17:13 AM
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Is anybody else battling to stay off HRT ...
Trialling 3+ months off due to worsening progesterone intolerance and migraines.
c.12 years post meno and never found a HRT regimen that suits, tried a whole range over the years from NHS Meno Clinic - low to high dose, all types of progesterone etc etc - every which way.
Simply cannot tolerate any progestrone - eg. Utrogestan, v-route - even when inserted high with an applicator, the effect is systemic, creates depression/anger etc, irritates the bladder, withdrawal is hideous in terms of mood/migraine etc etc. I absolutely can't take it Conti or alternate nights and loathe having a withdrawal.
Can't help thinking how unnatural it is to force/create a cycle once you're well post meno - who wants to be dealing with a withdrawal bleed in their 60s, 70s, 80s? [shudder]
The Meno Clinic have said that yes, prog intolerance can worsen further with age.
I can't afford the Marion Gluck bio-identical route. Mirena is a no-no. Hyster is too drastic and could create other issues. Can't tolerate any ADs. None of the herbals/alternatives work for me. I do all the other usual stuff, diet, vits etc etc.
For some women, maybe there just is no HRT that is viable - it hasn't been discovered yet.
So no options remain, I'm thinking?
GP has suggested CBT.
Cannot believe that my symptoms have returned *as bad* as they were when my periods stopped and my levels dropped through the floor - all those years ago.
Good grief, is there no natural balance/adjustment of the body in it's so-called "wisdom". Of course estrogen deficiency is forever but surely the body/adrenals compensate somehow, the majority of women don't take HRT and survive.
I'm just gritting my teeth and hoping that my body knows best and will respond/adjust, given more time.
How are you coping .... ?
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:bighug:
Menopause may be 'natural' but the effects can be devastating.
How have the migraines been since you stopped? Hysterectomy can product problems and is a major operation. Are you using plant based food stuffs because that on it's own may cause symptoms because some have oestrogens in.
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Hey Night_owl
Rather than go what I call the medical route - which I sort of describe in my head as being the meno experts/NHS prescriptions
Have you tried what I call the "alternative route" - something like Menopace (which is one fo the most well known). There are others - check the internet - or go to H&B and have a look at the natural botanical range they do.
Maybe something like that is the way to go for you - they may at least bring an element of control rather than be so strong they tip you into loads of side effects.
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Thanks for posts / suggestions, much appreciated.
Over the years when I've tried to stop previously I've tried a whole spectrum of alternatives - potions made by an expensive herbalist, various adaptogenic herbs, Rhodiola, Ashwagandha, Holy Basil, the usual Red Clover, Black Cohosh etc etc and loads of other 'remedies', masses of vits. Unfortunately, I didn't get along with Menopace as soya doesn't agree with me at all, can give vertigo migraine so I don't use any soya products.
Here's the thing. Since I've stopped the migraines have *lessened* and decreased in duration, a bit better. Which to me suggests that the fluctuations created by the sequi HRT make them worse. The agony of a hideous 4 day migraine when I was on the *estrogen only* section of my HRT drove me to rip off the last patch in total meltdown despair.
The Meno Clinic do suggest coming off every so often to see where you are and how the body responds.
My body is screaming out for hormones but doesn't like the so called 'body identical' estrogen patch and Utrogestan.
The symptoms which are getting me down the most are the drenching night sweats/shivers/adrenal/cortisol surges/insomnia, sleep deprivation, night heat that goes on for hours after a sweat, noctural incessant anxiety/worry/fear about everything and the future - sleep deprivation driving me to insanity, eg. can't string a sentence together and can't remember words, don't feel safe to drive but I have to, throwing washing in the rubbish bin instead of the machine next to it and then finding it later - loads of mad stuff.
The day flushes are bad but somehow I can sort of cope with deep abdominal breathing. They still are hideous though, preceded by the awful adrenal surge of doom and then the hideous heat/panic as if wearing a heavy coat trapped in a sauna.
When all this first started, I had *whole nights* with no sleep, working full time, it was a living hell, walking into walls.
Stellajane, I think I'll be in that small category of women who have sweats forever, jeez.
An indication of my stupid body's sensitivity to hormones - I *know* that I get systemic absorption from Vagifem, people will say otherwise but I know my body. Three times I've used VF (stopped that too) to see what would happen and yes, that evening I had a migraine.
The fabulous choice:
[NO HRT] Night sweats/insomnia/sleep deprivation, slight improvement in migraine, no Utro (fab)
-V-
[WITH HRT] crippling migraines and taking vile Utrogestan (most women are able to tolerate it) and resulting depression mood changes but much lessened night sweats.
What also drove me to stop Utrogestan was for the sake of my relationship. the boiling anger/rage/depression that it creates, my partner gets brunt of it - he said he is scared of me, walking on eggshells - last use of Utro, during a heated argument I threatened to stab him (!) fortunately I didn't have a knife in my hand - then felt such dreadful crying remorse afterwards. Progesterone drives me nuts, unsafe. Mind you, I'm no fun without HRT but at least not axe-wielding.
As I am typing this my sweaty wrists are sticking to the PC, ugh. Nice.
Oh, what to do ... round and round in ever decreasing circles.
Currently researching 'alternatives' like a mad woman, hoping to find The Holy Grail.
If I find it, I'll let you know ...
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ps: Thinking about CBD (Cannabis Oil) although from what I've read what is sold online/in health shops doesn't contain enough of the effective ingredient.
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Have a look-see at the NAPS web-site and ask there. Also, Ovacome - the support group for ladies who have had ovarian cancer may help. Cannabis oil can be prescribed by a Consultant but they are not spreading usage across many specialities yet. Again, might be worth asking, I think it's aimed at those with epipsey thus far. [watched a programme this week about a family desperate to try it for the 16 year old son, badly affected].
A bit off kilter but if one doesn't ask ;)
How is your diet? When I had severe PMS NAPS advised me to eat every 3 hours even in the night. They have good advice on their web-site, I looked yesterday. Slow release foods can help anxiety.
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Hi Night_owl - can you drop your utro to 7 days as per the Studd regime? Nick Panney is his protégé I think.
I too am progesterone intolerant and am having to go down from 10 days to 7. Actually quite a lot of women cannot tolerate it and when they are fertile their own bodies production of progesterone can be the thing that produces suicidal PMT! You've heard of cases in the paper where menstural women have killed their partners right?
Which oestrogens have you tried?- I have noticed more and more posts here that where one type causes migrains for some, it is fine for another. It could be you don't have the right type of oestrogen for you or the right delivery method. They all seem to have different effects different people despite being "bio-identical oestrogen" and in theory working the same. Everyone here knows they don't.
I can't do everol nor can I take my oestrogen orally. I have only managed find the gel works for me and then I had to play around from 1 pump right up to 4. I couldnt budge my anxiety, insomnia or left eye headache on anything else. I take Utro but will be reducing my days to 7 on the next cycle.
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Dr Kathleen Dalton represented several girls in Court who had killed due to premenstrual syndrome.
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Any progesterone seems to send me psycho/nuts, my own used to - lifelong terrible periods/PMS/acne up to late 20s - assume I've always had hormone imbalance / endocrine issues. Difficult case to treat.
My dear departed Mum had hyster plus ovaries out at 39 for agonising endometriosis, she never took estrogen, I wonder how she would have been if she did.
I did actually see NP at last appointment, he said I could go down to 7 (from 10) x 100mg Utro, *6 weekly* which I had been doing for quite a few years - and that yes, progesterone intolerance can worsen further with age.
Particularly over the years I've noticed the withdrawal after stopping Utro has got more extreme, more suicidal, life's not worth living overwhelming thoughts. It's a mad cycle and I'm tired of it which led me to once again throw in the towel. I realise that my own natural production must be down to zero now, being 12 years post-meno.
Oestrogens I've tried: Oestrogel (worsened migraines, too many peaks and troughs) Evorel 50, Estradot 50 (didn't agree), Estraderm 100, 75, 37.5 (cut to dose), 25, (Femoston and Elleste in early days, disastrous). By far Estraderm 25 seemed the most kind delivery and best at lower dose. My estrogen blood level was less than 100 on 25 patch which the clinic said was okay as not everyone needs high levels. On higher estrogen than 25 patch I had hideous period pains and worse migraine. Unfortunately I'm particularly sensitive to micro fluctuations.
If I give in and go back on, maybe I should think about trying a different type patch - the clinic told me they're all more or less the same but I agree, they do have different effects. I just can't face thought of taking Utro again though, of going to that deep, dark hole again ....
Ladbt28, so you are able to tolerate 7 days, is that per month or longer cycle - how do you find the withdrawal?
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It's a longer cycle - it's not been agreed with my medics but... ;) - I just do it cos I have worked out it works for me! So currently I am working on 21 days oestrogen before I start 7 days utro. I don't have much of a problem with withdrawal when I only take 7 days. I have a problem when I start it because 3 days in, I am falling down the rabbit hole. I have the same suicidal issues as you if I take it longer term 10 or up to the 12 days you are supposed to take it, I can barely manage 10 and then I have to try really hard, so am cutting to 7. I was given it continuously at one point because I am post meno at 57 and it's a wonder I am still alive!
I do know of one person on the forum who only takes 3 days but does not speak about it publicly because it is advice which is outside the conventions. she has regular scans under her consultant. I think200mg for 3 days and she bleeds on 3 days! It is not talked about because it is considered controversial on the forum and causes a bit of a furore especially when there are new people asking about hrt rather than seasoned old hands like is who have been there and got the T shirt :) I can't remember - she could be under Studd herself? - it is a long time since we messaged!
Next cycle I am planning to push it to 28 days + 7 utro because after my bleed which lasts 4 days it takes me another 4 days to start feeling right and it takes up too much of the "month" so to speak what with bleeding and "going down the rabbit hole". I need a bit more of my life back. It has taken a very long time to get to this point to get the right hrt and then to work out how to use it best for me has taken 7 months in total - prior to that I'd been at it 3 years and then I was on prempakc for 7 years but didnt know any better that it didnt work for me at all!
I get no peaks and troughs with my gel but I am on 4 pumps which is high, all 4 done in the morning but I do know some women who get peaks and troughs split the dose 2 morning 2 evening. I have never had a blood test ever. My treatment has been on the NHS and based on symptoms and much trial and error like you.
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My dear departed Mum had hyster plus ovaries out at 39 for agonising endometriosis, she never took estrogen, I wonder how she would have been if she did.
Estrogen would most likely have been absolutely terrible for her. Endometriosis responds to estrogen (telling it to grow). So it's better to avoid it. It's also why it can get so bad in peri since progesterone drops first and estrogen can fluctuate wildly, jumping very high at times. My family deals with endometriosis a lot. My mother and most of her sisters all had hysterectomies before 30 or shortly after because of it. I have it as well as several cousins.
Best of luck trying to find something that will work for you. It sounds like you've really tried quite a bit. But I agree with what you said about trying a different patch if you do go back on. It is not true that it is all virtually the same. I've been told that with many combined pills in the past and everything as well and that is certainly not true. While the "active" ingredient might be the same, the whole concoction isn't. I really think they just say they are the same because they offer the same therapeutic benefits...certainly not the same.
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Hello Night_Owl,
Love your username! Tell me about your migraines... have you been experiencing them in perimenopause or before?
I have trialled Estradot+Utrogestan for 3 months and gave up for 4 reasons: it didn't touch hot flushes and anxiety, it worsened migraines, Utrogestan made me suicidal and I was in late peri so I wanted to know when I was menopause wise (2 years now).
I haven't taken any other drugs (HRT or alternatives) ever since. I am managing hot flushes with ice packs, gel packs, fan, sipping cold water, no caffeine, no alcohol and mindfulness (have just started some yoga at home). They have decreased in number and severity. Anxiety has vanished along with hormonal fluctuations, thank goodness, although I have always been an anxious person, but nothing like hormonal driven anxiety. I'm sleeping much better now and migraines have completely vanished (fingers crossed), never had any suicidal thoughts again.
I have decided that I want to stay away from migraines and periods, both have plagued my life throughout my fertile days (40 years). Enough is enough. Hot flushes are nothing compared to them and as long as I can manage to have restorative sleep, I'm going to stay drug free for as long as I can.
If VA strikes lubricants and moisturisers will be my first line of choice.
I have read a lot of posts from a former member called Elizabethrose who had awful migraines and couldn't stand oestrogen, she eventually stabilised on Vagifem but she also had signs of systemic absorption. Have a look at her posts!
Hope you find an answer soon!
Conolly X
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Thanks All for posts and information.
I was on long cycle - Estraderm 25 patch with 6 clear weeks (42 days) of 'estrogen holiday' then Utro 100mg x 10 nightly, v-route. **This regimen was only prescribed under the guidance of Meno Clinic + yearly endo scans**
Similar here Ladybt -
Days 1-3 = slightly energised
Day 4 = feeling hideous, struggle badly for the remaining 6 days, eg. can't wake up in mornings
After stopping, (murderous) PMT off charts for 5 days
Then withdrawal bleed (old blood) occurs for 4-5 days
Further 5 days to recover
= Total days feeling ghastly: c.21 which is too long and no way could I be doing that into my 60s/70s.
Too much/strong? progesterone for the small amount of estrogen - but a necessary evil.
Migraines occurred at any time, when on estrogen only and when on Utro, so I couldn't identify prog as the culprit - it's more the fluctuation - maybe 6 weeks is too much estrogen accumulation.
I used to feel better immediately when I finished taking the Utro, however not so recently.
CLKD, I've been watching my diet, trying to eat well however I've gone back to the madness of eating gluten free oat cakes and bananas at 3am and 4am in the darkness whilst busily worrying about the future. Fun stuff.
Connolly, thank you, very encouraging to read your post, how brilliant that the flushes have decreased, the migraines have vanished and you're sleeping - how wonderful, that would feel like a dream come true! I will look up Elizabethrose's posts.
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).
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Hi Night_Owl
Good to hear from you but not under such circumstances - I was wondering how you were doing?
The other members are giving you lots of great, advice but I know you have actuallly tried pretty much everything over the years and you are sadly very sensitive to both oestrogen and progesterone.
I also remember that unlike many women, you haven't been able to go onto a longer cycle even with that very low dose oestrogen of 25 mcg without your womb thickening too much. Great that you are now able to reduce your numbers of days on the prog. I presume this has been agreed rather than lengthening your cycle to absolutlely minimise the number of days you have to take the dreaded prog? You are clearly in the best hands and being monitored.
No-one should dispute that the oestrogen from Vagifem is absorbed systemically - it's just that normally this is a very small amount - but if your tissues are not plumped up (due to maybe not being able to take a high enough dose?), more is absorbed, and because your HRT oestrogen is also low dose that would be a reason why you could be noticing it?
One thing I'd forgotten and not clear about is your getting migraines even with oestrogen? I can't remember whether you were getting them all the time even on the oestrogen only part of the HRT, or just during the prog part and the withdrawal?
I can't really offer any suggestions - but just a couple of thoughts. In your position - if I could tolerate oestrogen for long enough on its own without migraines - I would seriously consider a (sub-total) hysterectomy at this point - despite the problems that it can cause, just because you are still so young and if you might be one of those who has debilitating flushes and sweats for years to come - well to me the prospect of a better quality of life would seem override the potential problems from the hysterectomy.
Secondly - and this is contrary to anything you've taken so a long shot - and I can't remember if you've tried it yet, is the Duavive? That does not contain a progestogen but a different drug that stops the oestrogen thickening the womb lining. However it is a tablet and the oestrogen is made from horse pee - but if you were prepared to give it a try I would say sod the principles in your case! I know tablet HRT is generally contra-indicated for migraine sufferers - so maybe it has been ruled out altogether? Does Nick Panay or has he suggested taking this compound (Bazedoxifene) along with the oestrogen you have already been taking? I know this would be very much off licence but it is available as a separate drug - although maybe not at the same dose as in Duavive.
Finally - Dancinggirl is in a similar position - not regarding the progesterone intolerance and migraines - but in deciding to stop HRT in her early 60's (after many years of taking it on and off,) due to ongoing problem with bleeding etc. Hopefully she will be along to tell you how she is coping with the returning flushes etc but she hasn't been around much recently so maybe if not, send her a pm ( if you get notifications of these by e-mail).
As you said and Stellajane echoed - it does seem weird having bleeds in your 60's - and I do wonder about my poor old uterus - but I don't know what the alternative is either? You are still quite young though....
Sorry I can't be of more help but did want to try to suggest something...
Hurdity xx :bighug:
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So ref Migraine
I started periods at 13 and soon after started with "migraine" surrounding my left eye and the left side of my face plus I used to get a weird feeling at the hollow of the back of your neck where it joins the spine, like someone had cracked you on th back of the head. No aura but it would make me feel nauseas but I wasn't sick. 'Went on the pill at 16 and they remained the same. For the next 40 years this very debilitating pain in my face continued off and on without what seemed a pattern (or maybe I missed it?) meanwhile I had every test imaginable sinus, eyes, nose etc etc. No meds shifted the pain which when it was bad came and stayed for up to 3 weeks at a time.
I stopped the pill and the headaches lessened - possible clue, just maybe but still no real pattern? got a normal coil but I still got them. Neer really ever got rid but probably periods where I just didnt notice they were that bad. Meno they were back with avengence. I was on anti-depressants fro 40 years which was totally wrong because my depression turns out has always been hormonal.
Femeston brought a headache that lasted 6 weeks! needless to say no more Femeston! I am now pleased to say that since my gel & utro, they have gone???? No left sided eye headaches or weird feeling at the back of my head. You mention high oestrogen and my dose is considered high but you have done that with other oestrogens and it has made no difference to you?? I dont know why mine have gone but it is definitely hormonal and why nothing seems to shift yours Night_Owl?
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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😘
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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
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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.
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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😙
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Hi Petrichor :welcomemm:
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😚
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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😘
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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.
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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😘
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Group :hug:
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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 :-X) 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 :)
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I did a search - there are several threads.
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yes but is anyone actually on it and reporting how it is going? Will have a look.
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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
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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.
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ps: Connolly, do you get the awful neck stiffness, - it's something I get most days and have seen numerous osteopaths, had acupuncture ...
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Maybe your neck would benefit if you see a physiotherapist? Has the neck been X-rayed recently? Mine gets stiff and I ought to remember to tip my chin towards my breast bone and rest, then lift and gently turn the head to the left and then central; then to the right ::). Occasionally I go 'ouch' when it nips >:(. Wear and tear probably ::)
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Hi ladies I use the 12 hour window for my eating regime now so that my gut gets the opportunity to fast at night and heal and it's been a real help.if I eat at 8am then I don't eat after 8pm or eat at 9am then don't eat after 9pm you get the idea.tge last smack I have before 8pm is a protein/ carb mix so ie smooth peanut butter/protein on a sour dough cracker/ carb with my choice of hot drink usually either caffeine free coffee with lactose free milk or redbush tea which is not a tea as such it's a herb really.these are great helps for a restful sleep also get some magnesium flakes from health food store or Amazon and soak your feet in a cup of them in a basin of water for 20 mins before bed,your feet will absorb the magnesium you need from the water and get rid of jumpy legs or cramps and do you the world of good.have your tea and cracker while your sitting doing this I do 😊good luck DD😘
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Cramp is caused by a lack of salt in the diet. 4 me bananas eased restless legs as they have potassium. I suffered for years, remember after a day up and down Hellvelyn crying with the discomfort ....... I hadn't discovered bananas by then.
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Hey Night_owl - that's a bit strange because it is such a new product - only available here in the last 2 years. I wonder if it is being discontinued because the take up is so low...….but then that is a chicken and egg situation because half the GP's don't know what is available and any good and has been on the market for Donkeys years! how are they going to be prescribing something only available in the last 2 if they haven't bothered to find out about it!!!! Oh I do despair!!
I really have no idea what is going on - loads and loads of hrt products are being discontinued at the moment which seems ridiculous when the subject is getting a much higher profile and women are getting more educated on the subject. :-\ you mention future generations getting better treatment what about us!! >:(
My husband gets the smelling smoke thing randomly - so I might suggest its not a meno thing ;D ;D
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Night_Owl, I'm really sorry that you have had to give up on HRT but completely understand your decision, it clearly isn't working for you.
Having read through your thread, I think you are probably in a similar situation to myself and your migraines are probably caused by generic hormonal instability and progesterone intolerance. In my case, it is only synthetic progesterone and Utrogestan that cause migraines but unlike yourself, I didn't have any history or PMS and didn't have any problems with my own progesterone pre-menopause. My theory is that our own hormones act as a kind of protectorate during our reproductive years and once the hormone levels start to decrease and become unstable, migraines start to kick in for some women. That could explain why you went so many years without a migraine.
Professor Anne MacGregor (migraine specialist) has written a lot about hormones and migraines and it is worth reading her material - you can Google it. She often recommends Tibolone, have you tried that yet?
Former member Elizabethrose suffered badly with migraines which started at menopause. She was very knowledgeable and wrote some fantastic posts so it would be worth typing her name into the search bar and reading through her posts. She is a great loss to the forum.
It's a pity Dr Nick Panay wasn't receptive to the idea of transdermal oestrogen alongside Bazedoxifene. It is available as a separate product (at the same dose as Bazedoxifene component in Duavive) and I would have thought he had the ability to closely monitor women using the regime. I decided to trial it with two pumps of Oestrogel just over a year ago and it started well but I found that it overly opposed the oestrogen component and I started to get menopause symptoms again. That said, I didn't have any migraines during my trial and although it didn't work for me, there is no reason why it couldn't work for other women. Again, type Bazedoxifene into the search bar at the top and you will see my posts.
I had intended to trial Duavive proper but decided against it after my trial didn't work out.
Ladybt28, I agree it is strange that Duavive is not popular in the UK but Ii wonder if GPs have been discouraged from prescribing it. Is it just being discontinued by the NHS or does it include private prescriptions too? It is expensive (over €30.00 and the same price as Bazedoxifene) so I wonder if that is the reason? There is another inexpensive product called Climodien (it has a well tolerated form of progesterone) which is very popular in other countries but it is not available in the UK even though it was licensed for use thoughout EU states by the EMC.
Is someone trying to reduce the range of HRT products available in the UK?
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ps: Connolly, do you get the awful neck stiffness, - it's something I get most days and have seen numerous osteopaths, had acupuncture ...
Hello Night_Owl,
Thank you for the explanation on vitamin E plus coconut oil for VA. I'll certainly try it when the time comes and I hope it works for you and you don't need Vagifem. I was wondering... have you used Vagifem every day for 2 weeks before changing to 2-3x a week, as many ladies were advised to do? I'm not sure if this is described in the leaflet and I haven't found any article explaining what exactly happens. Apparently this is necessary to avoid further systemic absorption.
Regarding migraines... yes, neck stiffness and neck pain are very common amongst migraneurs. Have you ever heard of the Migraine World Summit? Have a look on the internet, it's a wonderful opportunity to interact with fellow sufferers and the best medical and science professionals dealing with migraines.
Regarding MLE4901, the last time I've heard about it was on the Mariela Frostrup programme, The Truth About The Menopause and it seems side effects on the liver are quite serious, but they're still going to trial similar drugs according to this article https://www.sciencedaily.com/releases/2018/03/180314092319.htm (https://www.sciencedaily.com/releases/2018/03/180314092319.htm).
Conolly X
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Is someone trying to reduce the range of HRT products available in the UK?
Hello Mary G,
I think there was a marketing issue and maybe also a cost issue on the NHS. Duavive was developed by Wyeth and marketed in most European countries by Pfizer, after it acquired Wyeth. In the UK and a few other countries, Duavive was marketed by MDS (Merck, Sharpe & Dohme), don't ask me why, and now it is listed on Pfizer UK website.
Conolly X
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[/quote]
I was wondering... have you used Vagifem every day for 2 weeks before changing to 2-3x a week, as many ladies were advised to do? I'm not sure if this is described in the leaflet and I haven't found any article explaining what exactly happens. Apparently this is necessary to avoid further systemic absorption.
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Hi Connolly,
The instruction to use Vagifem daily for the first 14 days is in the PIL with the product. It is to allow the upper layer of the vaginal epithelium to thicken up (cornification? not sure if that is the appropriate word), which would indeed help to avoid systemic absorption. Sometimes 3 weeks is advised if the atrophy is bad enough to warrant it. The same instructions apply to Ovestin cream as well.
Hope this helps.
JP x
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Hello Joanipat,
Thank you! I was wondering if this has been studied? I couldn't find any reference...
Conolly X
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Thanks to All for input.
Connolly, re: Vagifem 2 week re-load - haven't done this for a while and currently trialling not taking any VF - so nearly 4 months off it and so far things don't feel much different in the undercarriage, although I know that can change. Utrogestan used v-route irritated my vg/bladder, as if it stripped the walls bare(!) and tbh I couldn't be bothered to use VF more than twice weekly and then more before using Utro - such a faff and the potential to trigger migraines.
What I don't get in the VF leaflet is this:
"When using medicines for any menopausal symptoms, it is recommended to use the lowest dose that works, and to use the medicine for as short a time as it is needed"
Surely for most it is lifelong use?
This article is dated 2011 so a bit old now, however:
https://somepomed.org/articulos/contents/mobipreview.htm?7/43/7857'source=HISTORY
"Low dose vaginal estrogen therapy may be used indefinitely, based upon the low risk of adverse effects, although clinical trials to date have not followed women beyond one year [9]."
Yes thanks, Migraine World Summit is a great mine of information, I subscribe to emails and have watched some of the videos.
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Hello Night_Owl,
Thank you! That's exactly what I feel about all the leaflets and guidelines, they don't speak the same language. Many menopause societies (medical) around the world advocate that leaflets should be changed, but this is being postponed by pharmaceutical companies and governments for years. Of course none of them wants a law suit in case long term use would cause a serious side effect.
Good news you're doing well without Vagifem and Utrogestan. Long may it continue!
Conolly X
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MaryG, thanks for your thoughts and suggestions, will check out Professor A MacGregor - and Elizabethrose's posts
I haven't yet tried Tibolone, something to think about - need to find something that doesn't create any fluctuations (my own hormone levels have flatlined) so it could be worth a shot.
At my next clinic appt I will enquire again about Bazedoxifene - see if there has been any change.
It does seem that more options of HRT are needed - Utro/Gel/Test prescribing seems to be on the increase, although great for some, not for others.
CLKD, one day I'll get around to seeing a physiotherapist (the osteopath is expensive) re: neck, last x-ray showed "general wear and tear", not much of explanation is it.
DroopyDrawers, agree gut health is so important, often I wonder if there's any HRT/Candida link. Since off HRT my blood glucose levels seem to be swinging around though and I often have to get up to eat in the night, not ideal I know, hope it passes.
Lots to think about and sorry for my garbled replies, my brain is poggled - many thanks to All for taking the time to post - I hope the information is useful to others.
J x
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Hello again Night_Owl,
I have just bumped into this article abstract, thought you might be interested.
https://journals.sagepub.com/doi/abs/10.1177/0333102417690891
Conolly X
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Connolly - such a cop-out isn't it "use for as short a time as it is needed" - if/when I go back to taking VF only, long term, without any prog to oppose it, think I'll still have a yearly endo scan.