Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Shell on October 14, 2019, 07:48:47 PM
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Hi All hope everyones doing ok?
Im currently on Estradot 100 after a total hysterectomy. Im 37 years old but im suffering horrendous hormonal migranes around patch change days.
Has anyone else suffered with this if so would you recommend tablet form instead to keep the dose even? My gynae really wanted me on tibelone as it provided everything, but straight after my hysterectomy it wasn't enough. Few years down the line now...wondering if anyone got any good advice and whether returning to tablets helped them.
Thanks in advance ladies xx :'(
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Hi Shell, I'm hoping for an answer to the same question myself. I started having migraine with aura on Femeston 1/5 tablets. I believe that non oral HRT is better if you get migraines but don't know myself. As you're a lot younger than me (I'm 54) I'm guessing a solution for you may be different. Best of luck.
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Hi Joney,
Thanks for your reply. Its so difficult as i suppose we're all so different in what our bodies need. Hopefully we will both get some answers. X :)
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Shell here is some info which another member kindly found for me
https://www.womens-health-concern.org/help-and-advice/factsheets/migraine-and-hrt/
Hope this helps.
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Shell, some women keep their 'old' patches on for 24 hours alongside the new ones. Did you try that? If you experience migraines on the day you change patches could it be a dip in hormones?
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I suffered for years with, what I now realise to be, menopausal migraines. The tablets ( elleste then femsoton) just made them far worse. After a visit to dr Newson's clinic I switched to Oestrogel and utrogestan. The utrogestan did not agree with me at all. I'm fact the migraines were worse. I went on a different form of progesterone ( not licenced) and the migraines all but disappeared. I've now had to change to Provera 2.5mg but the migraines have not returned. The oestrogel definitely works for me. I never through I'd get to a point of being migraine free. Some weeks it was 3/4 per week.
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Morning Alicess
Ive read somewhere else about keeping the patches on, im definitely going to give that a try.
Hi kdee69,
With me having a total hysterectomy I'm not on any progesterone, just on oestrogen. Yes im suffering with 3 to 4 migranes a week, its becoming unbearable. Im going to ask to be referred back to the specialist and see what input they can offer.
Ive been looking into tibilone as thats what my gynae wanted me to stay on as it gives all the hormones ?? Its so hard as ive tried most options.
Thanks for the replies.
Hi Tc, I'll take a look at the link. :)
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Morning Alicess
Ive read somewhere else about keeping the patches on, im definitely going to give that a try.
Hi kdee69,
With me having a total hysterectomy I'm not on any progesterone, just on oestrogen. Yes im suffering with 3 to 4 migranes a week, its becoming unbearable. Im going to ask to be referred back to the specialist and see what input they can offer.
Ive been looking into tibilone as thats what my gynae wanted me to stay on as it gives all the hormones ?? Its so hard as ive tried most options.
Thanks for the replies.
Hi Tc, I'll take a look at the link. :)
Hi Shell
Whilst the Ustrogestan made my migraines worse, it was the dipping of Oestrogen that definitely caused the migraines in the first place. Using the oestrogel has given me my life back.
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Hi kdee69
Thats all I want...my life back!! I'll definitely bring this up when I see the specialist. Thanks
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Just to say shell.
I leave old patch on for about 12 or so hours after putting new one on.
Xxx
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Hi Kdee, Can I ask are you on a conti or sequi regime? I went on HRT because of worsening hormonal headaches and was recommended to use a patch. I use evorel sequi and my worst headaches seem to start just before patch change. I'd go to 3 days but with the shortages, I daren't. I am worse on the progesterone phase. I wondered whether a continuous regime might be better for stability, but it's good having 2 weeks without any progesterone.
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Hi Shell - if you are getting the migraines before you change the patch then maybe it is a fall in oestrogen. If that is the case then I would definitely go to 3 days (unless you are doing this already). If you're getting them even as you start the 3rd day - then you need a higher dose ( if it's fall in oestrogen). I now change my patches every 3 days (for about the last 6-8 months or so) after ears of religiously doing firstly 3 then 4 days (used to be Mon and Fri eves), and then latterly 3.5 days (Mon eve and Fri morning). I think every 3 days for me is perfect -but you need to be at the right dose to start with so that the very slow decline over the 2.5 days after max dose has been achieved, does not affect you. Can't remember if you had oopherectomy at the same time as total hyster? If so then maybe levels fall off quicker as your own maybe lower generally especially if you are very slim?
Hurdity x
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Hi Kdee, Can I ask are you on a conti or sequi regime? I went on HRT because of worsening hormonal headaches and was recommended to use a patch. I use evorel sequi and my worst headaches seem to start just before patch change. I'd go to 3 days but with the shortages, I daren't. I am worse on the progesterone phase. I wondered whether a continuous regime might be better for stability, but it's good having 2 weeks without any progesterone.
Hi. I'm on a conti regime. I use two pumps of oestrogel and 2.5mg Provera each evening. I never ever thought I'd be migraine free and I thank my lucky stars every day that something finally worked. The issue is that it took two types of HRT, three types of progesterone and a period of cold turkey before I finally got there fully. Not to mention all the beta blockers, topiramate and sumpatriptan I consumed along the way. Oh and the physio, chiropractor and acupuncturist! I can categorically say that rubbing the gel in every day is the thing that works for me.
I thought I was progesterone intolerant but I think now I'm just some types of progesterone intolerant.
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Hi kdee69
I can definitely relate to all the meds, and every alternative therapy going especially no to no avail...we put our bodies through so much!!!
I dont need the progesterone as Ive had a total hysterectomy incuding ovaries, but you're the second person to say the gel is working for them, am i correct in thinking you just use gel as your oestrogen? Also how long did it take, and did symptoms get worse before they got better? Im really not sure if my levels are too high or too low? Its a minefield. Id just love some quality of life back. :-\
Hurdity
Hi yes ive had both ovaries removed also, im reluctant to change my patch more frequently as my GP is not very accommodating with the supply. Again im unsure if the dose im on is too high or too low for me at 37? I do suffer with joint pain, etc now also...i feel 90 not 37.
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Hi kdee69
I can definitely relate to all the meds, and every alternative therapy going especially no to no avail...we put our bodies through so much!!!
I dont need the progesterone as Ive had a total hysterectomy incuding ovaries, but you're the second person to say the gel is working for them, am i correct in thinking you just use gel as your oestrogen? Also how long did it take, and did symptoms get worse before they got better? Im really not sure if my levels are too high or too low? Its a minefield. Id just love some quality of life back. :-\
Hi there
I can obviously only speak for my experience and I was monitoring my full meno symptoms but I actually started to feel better within three days. Specifically focusing on migraines, the were down from 3/4 a week to one a week and much milder -still a migraine but not the mother of almighty ones. By three months in I felt back to “normal†symptom wise again and now, 6 and a half months in, no migraines. Yes, the oestrogel is my form of oestrogen. I do also take a high strength Vitamin D.
I suppose all you can do is give it a go and see if it works.
I do wish you the very best of luck xxx
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. Again im unsure if the dose im on is too high or too low for me at 37? I do suffer with joint pain, etc now also...i feel 90 not 37.
Shell. Younger ladies especially under 45 in surgical meno sometimes need higher levels of eastrogen than their older counterparts.
But i have found higher doses might not necessarily mean higher levels. . if you are not absorbing the patch well you may not be getting much from it even though it's considered a high dose. You may find you absorb more on another method at a similar dose.
Have you had a blood test. It might help in assessing if you are absorbing enough from the patch ?
It seems getting E levels right for the individual to control symptoms is key to any HRT regime
You mention tibolone. It may not be enough eastrogen for you but i know of some ladies with no uterus who choose to take progesterone alongside eastrogen to counter the effects or "balance" hormones. Obviously a careful consideration as progestins have their own side effects.
Certainly testosterone is an important factor, particularly in surgical meno. Half of our T production has been lost. T decreases with age So at your age without surgery your T would naturally be higher than say myself at 54 so it's probably a good idea to explore this.
Even at my age (suremeno at 53) I was offered T because it's widely accepted that there is a significant drop after ovary removal.
I feel for you. I know how intolerable migraine is.
I hope the specialist is able to help. Xxxx
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Hi Tc,
Well I've just come back from my GP after refusing countless attempts at him trying to put me on antidepressants and explaining im only down because of the continuing migranes etc, he was not willing to change my HRT method, said this dose is important as Im young and need oestrogen for my bone health etc...which I already am aware of. I asked if I could maybe chsnge to the gel and have the option to lower it, but also have an extra pump if the dose didn't suit. I explained that the continuity of gel may be beneficial to me as it seems the patch changes are my issue, but have been outright refused and prescribed Topirimate instead for migrane prevention (im very reluctant to take this as the side effects are crazy) plus I know why I have my migranes they have been this way since I was 11 years old. :'(
As you say I believe the delivery method is not working for me, and maybe the gel would be tolerated much better? Im wondering if the 100 is too much for me, and that could be where the issue lies.
I have been prescribed testosterone aswell, but was reluctant to try it. I think a blob a few times a week could be beneficial? As you can tell I'm at a total loss with not many options it seems.
Thanks for your advice, if only doctors knew half of what we seem to.
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I had a blood test last year and was on this regime, I was told my levels where 1700, I dont even know what that means or equates to if im honest.
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Shell, do you have a menopause clinic anywhere near you? You could ask your GP to refer you, that's what I did. I had to wait about 6 weeks for an initial appointment. The clinic would then advise the GP on what to prescribe. I was asked if I wanted gel or patches.
Thanks Kdee for getting back to me.
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Hi shell. Do you mean 1,700 pmo/l?
Ive got my blood results sitting in front of me and according to the range on mine That's at the top end of the mid cycle range which during a natural cycle would be the highest point. Different labs may have different ranges. But I still believe 1,700 is at the higher end.
During your natural cycle did you find migraines were worse during mid cycle ?
I think it's important you get a more up to date blood test.
I'm trying not to sound angry but docs with an attitude like yours (I've come accross plenty) realy make me mad
Very few women find the right regime for them straight out the gate. He should know that "tinkering" with dose and methods is more often than not required. I dont understand his reluctance to let you try the gel.
Is there another doc in the practice you can see or a practice nurse? Or Can you ask to be referred to a meno specialist?
Xxxx
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Hi Tc
Im honestly not sure what form the 1700 reading is in, I was just given the number and told it was fine ::)
I have asked to be referred to the specialist menopause clinic, but think I may have a wait before I'm seen. However at least its a step in the right direction.
I suffered pre and during my period with migrane, and also at ovulation...pretty much any type of fluctuation would trigger a migrane.
I ended up asking to also speak with a different doctor who was much more understanding thst not one size fits all.
I agree an up to date blood test is needed, hoping that will be done soon to give me an idea of too high or low.
Xx
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Shropshirelass
Hi yes im being referred just the dreaded length of time it might take to be seen. Fingers crossed it isn't too long.
Xx