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Author Topic: GP has prescribed Qlaira - Feeling scared and need encouragement!  (Read 54539 times)

Gilla999

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #180 on: March 08, 2021, 07:24:53 AM »

Madame Ovary, in general I would say it is definitely better since taking the Pill - I am able to go for a week or more with great sleep and feel happy and healthy. I'm still having a night or two every week or 10 days where I'm awake between 1am and 6am but I don't think that's my hormones now, because it's not accompanied by the dreadful night sweats - the night sweats have gone, I think. The sleep is still not normal compared to 2 years ago and before, but it doesn't seem to be nearly as bad as the previous 6 months before starting Zoely, where two weeks out of every four I was getting hardly any sleep at all. So I'll take what I can get! Outside of the odd night or two every week I feel pretty good.

I really would recommend looking at the CBT-i (Angela too!). The sleep restriction aspect of it is quite daunting and I personally found following it so strictly didn't help me as it made me even more anxious about my sleep, but the principal of pushing your bedtime to as late as you can possibly manage - so you're literally falling asleep on the sofa - has definitely been a useful tool for me. I am also someone who goes to bed early by nature and especially after a night of no sleep it is natural to want to, but it can actually be counter productive.

Sending you all good vibes xx
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #181 on: March 08, 2021, 02:22:00 PM »

Hi Girls

Day 19, still spotting a tiny bit, and feeling a bit bloated but doing OK overall.  Not weighed myself for a couple of days, but feel about the same, but my appetite is definitely up a bit.  Didn't sleep great last night or the night before but my partner has a memory foam mattress, don't know what the fuss is all about, I find it massively uncomfortable and too hot (and yes I did break lockdown, but I won't tell if you don't)!  Think it was more the bed than my hormones, because I sleep fine in my own bed.  You have my sympathies on the lack of sleep, it really affects mood.  Limiting screen time in the evenings can also help, as can having a hot bath, as the falling body temp helps us fall asleep.  Think they call it good sleep hygiene.  I'm a big yoga devotee anyway, there's some good vids on youtube.

I wanted to ask, and it may well be buried in this thread somewhere, how does the estrogen in Qlaira compare to estrogel, is there an equivalence in terms of amount?  Is there a way to roughly work out what it'd equate to in pumps?  I think one pump is 0.75mg, so most days we take the equiv of about 3 pumps (four on the first two high E days)?  And I think I'm right in thinking the ratio of prog to estrogen in Qlaira is different to traditional HRT (ie we take more progesterone)?  Obviously it's not a like for like comparison, so I'm guessing we can't say 'it's about the same as taking x utrogestan' but I'm just curious in terms of the dose we're taking. 

To date, defo felt the best on the 5 days of 2:2 but too soon to say ....

Reb
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Gilla999

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #182 on: March 09, 2021, 08:21:08 AM »

Ladies quick question - I remember someone mentioning on here (Reb, was it you? x) about a histamine response as part of your symptoms, and was wondering if you can give a bit more info on what you meant by that. I've noticed that when I wake in the middle of the night I often have an inflamed nose so I need to breathe through my mouth and it lasts for most of the next day too. It's probably nothing / not connected but as I am one of those people who generally suffers with auto immune stuff, I was just interested to hear what you meant.

Two days in a row now with being awake 1am-5am... but I know that it passes soon and I can then have a great 1-2 weeks after it, so trying not to stress about it too much. It is definitely overall MUCH better since starting Zoely - it is 3 months today since starting it. In case it helps others, I had a low dip of about a week where I definitely felt PMT stuff going on the week of the 2 month mark. But after that and up till now when I look back over my calendar the last 4 weeks have been relatively much more plain sailing. Hope this helps others xx
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #183 on: March 09, 2021, 09:23:45 AM »

Hi

Yes, there's a link between histamine and estrogen, this often shows up in peri, with estrogen surges or as women start HRT (rashes, itching, food intolerances, heavy and painful periods etc).  This explains the link although she's a func med and they seem a bit wedded to the whole John Lee progesterone thing which is a bit woo woo in my opinion so I'm not sure she's entirely right on the 'cure' https://www.larabriden.com/the-curious-link-between-estrogen-and-histamine-intolerance/

If you think of your histamine load like a 'bucket', it can be helpful to keep your bucket at a tolerable level with good diet etc so that when you add something that increases the histamine response (e.g. estrogen) you don't then end up with an overflow.  There's also a connection with anaemia and histamine, and I'm doing a lot better now my iron is fixed (had an iron infusion in Jan).

Hope that helps,

Reb
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #184 on: March 09, 2021, 10:23:11 AM »

Thanks for the update Gilla. Really helpful. So pleased for you. And really useful to hear you had a pmt week at end of second month and since been better.

I'm at end of week 7 on microgynon. As you know, it's been hard. I do feel my mood has been slightly improved the last few days. But physically, I'm feeling dreadful. Head feels heavy and off, a bit nausea and generally yuck. But... I'm wondering if it is side affects from my covid jab I had 6 days ago... Just not sure. I hope it is, otherwise I'm now in the physical torture of the pill. Ahhhh
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Gilla999

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #185 on: March 09, 2021, 10:53:21 AM »

Thanks for the info Reb, that's really helpful. I had no idea about a connection between etrogen and histamine.

Crispy obviously everyone is different, but for me that week (exactly on the two month mark of starting take the Pill) was definite PMT - it wasn't just the insomnia and night sweats it was also very sad and low mood (which is my classic PMT mood symptoms) for about 5 days. And then it lifted very suddenly and I felt fine. So what I'm saying is it's clear to me that my own hormones were still active at that point (they could still be active now, who knows! One doctor said to me in can take up to 6 months!) But despite the odd few days I have overall felt much better across the last 4 weeks.

Having said all of that I didn't feel that any of my hiccups were due to side effects of Zoely - I really have had zero side effects of the Pill itself except for some weight gain and changes to my digestion (I have to have a colonoscopy next week it's got that bad - perhaps it's just a coincidence it started at the same time as taking Zoely though). So if you feel like your symptoms are side effects of the Microgynon itself perhaps that's different. Having said that, most people I know who have had the Covid jab have felt as you describe for a week or so afterwards, so definitely wait and see how you go over the next 3 weeks. Would you say you have overall felt any better since starting Microgynon than being au natural?

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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #186 on: March 09, 2021, 11:20:14 AM »

Thanks Gilla.

Yes, apart from this week, I would say the physical symptoms have been a lot better. No headaches, no dizziness, no nausea, no ovulation pain (ended up in out of hours with that a few months ago). That's why I've plodded on.

The ragey, grumpy and low mood are defo side affects. Just keep hoping they bog off. Along with agitation and shakiness.

This new physical stuff is annoying. Really hoping it's the vaccine and it'll bog off. I just attribute everything to my hormones and notice everything.

Thanks for the reply. It really does help. Xx

Good luck with the colonoscopy. I think they do say the pill can make your system more sluggage, but this sounds quite exteme. I assume no change in diet? I was eating gluten free for a year and since stopping that, I've been so much better in that respect. I guess it was a lack of fibre. Xx
« Last Edit: March 09, 2021, 11:22:40 AM by CrispyChick »
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #187 on: March 09, 2021, 02:19:50 PM »

Hi both

Crispy I'm going to be an annoying stuck record and implore you to rule out iron deficiency (not to be confused with anaemia, which is absolute iron deficiency, we can be symptomatic with what our GPs would consider 'normal' but suboptimal iron results).  I've had a radical improvement in low mood, shakiness and generally feeling terrible by fixing my iron - honestly I was an emotional wreck.  The reason I've been put on Qlaira is to slow down the bleeding driving the iron loss.  It's incredibly badly understood in primary care.

Gilla, mind me asking about the weight gain? I've put a few pounds on, but the iron deficiency over Xmas made me incredibly anxious so I think I worried a load of weight off so wondering if I'm rebalancing a bit now, or whether it's the pill ... I'm still spotting and feeling a bit PMT ish so perhaps it's just the ups and downs of my own hormones plus the pill at this early stage and will settle down?

Reb
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MadameOvary

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #188 on: March 09, 2021, 05:35:31 PM »

Sorry your sleep has gone haywire again Gilla. And good luck with the colonoscopy.

I've had 2 nights of perfect sleep. It's the 2 nights where I'm on 3mg of estrogen. The rest of the month is terrible. So I'm wondering if it means low estrogen is causing the insomnia (those 2 days are the highest dose of estrogen in the Qlaira regime - the rest of the month is 2mg or 1mg) or is it progesterone that's causing the insomnia?

Crispy, I hope you feel better soon. I know a lot of people who've felt unwell after the vaccine but it passes quickly.
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #189 on: March 09, 2021, 09:08:04 PM »

Hiya

Interesting about your sleep, that's why I'm wondering about the equivalence doses, it's too soon to say for me, but I'm defo doing better so far on the high E days (I already know I feel great on a good dollop of E, but I also felt better on higher E relative to P too, so that whole first week).  What I'm wondering is, is the prog dose enough to keep our linings thin to act as the prog component of HRT?  I think I've read it is.  If yes, then I'm sure I've read somewhere (wish I could find it, sure it was on this forum, will look again, it's ringing a bell that Hurdity was on the thread) that you can then top up the E with gel, til you feel good.  I think we're on a fairly generous dose of prog, so I think I'm remembering correctly.  I don't know enough about HRT and hormones, so could with a knowledgeable person to chime in here, but I think lots of women on nigh on continuous prog need a nice bit of E to balance it out and feel OK, that it's not just the amounts but the ratio that's important too.

ie) you could play around with E a bit once you've got a long enough x axis of data (time) to say with some confidence what 'works' and when you feel good because you've got the steady dose of prog to keep things safe?

I'm intending on doing another private scan in a couple of months to check it's keeping my lining thin, and will discuss with my gynae too, but I'm hoping she'll let me top up if I need.  The first regime I tried, I did a couple of months of E-only before adding the prog, and I honestly felt bloomin fantastic, I miss feeling nicely dosed on the stuff!  I think the gel also absorbs better through the skin than going through the gut too.  3mg is 'equivalent' to about four pumps I think (prob less given absorption / conversion?) so ... I'm thinking why can't we just whack a bit of E gel on top once we've settled down if the prog element is doing it's job?

Not sure that helps, correct me if I've misunderstood ... but my major issue is finding a prog I can handle that controls the bleeding, if (fingers crossed!) Qlaira is it - dionegest - then this probably makes me a 'maverick patient' (wouldn't be the first time!!) but I have no intention of suffering on a regime that isn't quite right, and if I need a tad more E don't see why I shouldn't have it!

Reb
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MadameOvary

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #190 on: March 09, 2021, 10:25:54 PM »

That does make sense Reb. But I don't know anything about HRT doses or how Qlaira compares or whether it's OK to top up the estrogen.
I find it all really confusing to be honest. So many of my symptoms pre-qlaira were things associated with too much estrogen (painful, swollen breasts, weepiness etc). But the estrogen in qlaira seems to make me feel great. I don't really get it!
Keeping my fingers crossed that qlaira sorts your bleeding and low iron. It's been a game changer for me. I still can't get over the 3 day period with no need for nurofen. It's a miracle!
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Gilla999

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #191 on: March 10, 2021, 08:59:02 AM »

Hi all

Well I had ONE hour of sleep last night and have been awake since midnight, which means a grand total of 5 hours sleep across the last 3 nights. Obviously feeling completely wrecked now.

One thing i did clock was that as it was exactly 4 weeks ago when I had the last bout of this and it has made me wonder if it could still be my own hormones cycling underneath. But perhaps I'm just desperate for a reason why this keeps on happening. I know that the night sweats have had a definite improvement since the Pill.

In terms of Estrogen compared to Prog, I know for certain that when I was getting these bouts of insomnia pre Zoely it was ALWAYS at the times in my cycle when my Estrogen dropped (ie firstly just the week before my period but then over time grew to be from day 14 onwards like clockwork). From day 1 to day 14 (when Estrogen is naturally high compared to P) I felt bloody fantastic and had no sleep problems whatsoever. So Reb it's no surprise at all for me to hear you are better on the days on the high Estrogen in Qlaira (it's also the reason why I chose Zoely over Qlaira as I didn't want the fluctuations) and Madame Ovary same thing - the nights you are not sleeping being when your estrogen is lower is just classic.

Reb I am really interested in the idea of topping up with Estrogen gel, particularly if I have another bout of this in another 4 weeks, as I think that timeline would really indicate to me that my own cycle has not been fully suppressed. Do you know how much you take and how to go about it? I don't have a gynae and the GPs are useless

Reb with the weight - for me it's completely impossible to tell because I'm also on Mirtazapine - an antidepressant I was prescribed years ago - for which the average weight gain is two stone. I've gone from a size 8 to a size 16 in 18 months and put on over two stone despite eating better than I did before. I did notice that when I started Zoely I put on an extra 4 or 5 pounds but honestly it's impossible to tell if it was really the cause. The insomnia bouts also mess everything up in terms of healthy eating etc so it could really be anything xx

« Last Edit: March 10, 2021, 09:00:55 AM by Gilla999 »
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #192 on: March 10, 2021, 07:01:30 PM »

Hey

So sorry about your sleep, that sounds miserable!  I'm still not very knowledgeable about hormones (thyroid hormones yes, can do those standing on my head, sex hormones and the female menstrual cycle makes my head hurt) but I think I'm getting both high E symptoms (when my histamine goes bananas at around day 13 and 14) and low E symptoms like you say too.  I can defo see changes in my skin through the month too, so just as my period starts, I look older and a bit haggard, and my skin becomes softer and more plump as we go through the first half of my cycle. I defo feel much better in the first half of my cycle than the second, always have.

I don't know about adding gel as I'm not doing it yet, but I'm sure I read it somewhere on here or on Mumsnet, I'll have another look and see if I can find the info, but I'm sure I read that for women our age in peri, the prog element can act as the prog part of HRT, so it stands to reason (well my reason anyway, I could be wrong) that like other women on HRT provided we are protecting the womb then surely the E dose is a matter of a bit of trial and error.

Could your anti depressant be affectng your sleep too do you think? 

Weight, did some googling on Qlaira and on the pill generally, apparently a little weight gain - 5 or so pounds - is typical for the first two or three months but it's water weight and temporary as we settle down, so provided I don't keep gaining (going to up the exercise and cut down on the creeping amounts of lockdown G&T which then make me open the cupboards for a late night snack of cheese and crackers .... ) I've decided not to worry about it.  It's more the PMT body image stuff that I'm finding harder, it's like having fairground mirrors in the house, I've always had this just before my period but it's been hanging around for over a week now ... you know, you look at yourself and your first automatic thought it 'Christ I look fat' - I know I'm NOT fat, it just wears me out, feeling rubbish about myself!  I hope that passes.  That said I know progesterone is the PMT hormone, which is why I'm wondering about balance of P to E, but that's a problem for another day, will do some digging and report back.  If your GP is crap probably easiest way is to use an online GP to write you a script ... but you'd need to know what you are doing before you do that.  I'm hoping my gynae will get on board with this idea if nec and advise!

Sleep for me - I have to have crisp clean sheets if I can't sleep, my bedroom needs to be aired, and tidy (I can't sleep in a messy room), and I'm quite strict about not scrolling on my phone or anything that can rev my brain up.  I only get it rarely but if i have an issue it's getting to sleep, not waking up.  Have you tried guided meditation or anything like that, or some of the sleep sounds on youtube (falling rain, or sounds crazy there's this art teacher called Bob Ross, he's got one of those soothing voices, there's tapes of his lectures with falling rain sounds, it's remarkably relaxing!!)?  It's miserable when you are sleep deprived, you have my sympathies and I hope you get some relief!

Reb
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MadameOvary

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #193 on: March 10, 2021, 08:24:47 PM »

Wow, Bob Ross with rain sounds amazing! He has such a soothing voice.

Gilla, you must be totally wrecked. I hope you get a better night's sleep tonight.

I drop off like a baby but I wake like clockwork at various points in the night needing a wee and a drink of water. I feel incredibly thirsty when I wake up. Pre qlaira it was just terrible in the 2 weeks before my period, getting progressively worse until my period started. I would sometimes wake up and be unable to get back to sleep at all. Whereas now I wake up pretty much all of the month (apart from the high estrogen, no progesterone days) but I go back to sleep easily.

It's definitely not as bad as what you're dealing with Gilla although I've been there in the past and can sympathise.

Reb, my room is a tip and I'm very bad about scrolling through my phone. I know I shouldn't but I still do it!

I also know what you mean about feeling fat and premenstrual.
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Gilla999

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #194 on: March 11, 2021, 06:31:59 AM »

Thanks Madame Ovary and Reb - managed to take some pills and drug myself to sleep. I did wake at 4am with night sweats but fell back asleep again. I also have low level cramps this morning, just like I did when this sleeping thing last happened 4 weeks ago, so now I'm wondering if my hormones are still at work. It's so frustrating not being able to know at any one time what's happening inside our bodies and therefore not knowing how to treat it. I actually tried Estradot prior to Zoely so I could get another prescription of that and even cut the patch in two to start with a lower dose, but I'm really reluctant to do anything without knowing if it really is the cause. The only thing I can think to do is pay for one of those hormone rhythm profile tests where you do a saliva test every day to measure your hormones, so I would hopefully be able to see if there are still fluctuations happening.

Reb on the weight thing, I can totally empathise. Having been a size 8 / 8.5 stone all my life and going to a size 16 / 11 stone with the Mirtazapine it has been a huge shock to my system and very hard to deal with psychologically.
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