End of tether - progestrone, 5+ day migraine

[nightowl]

Hi All

Mulling over whether I should take step of having a hyster due to prog intolerance.

I'm trying to surface from the worst ever 5+ day migraine I've ever experienced, brought on by taking progesterone. Taking ages to type this.

Background - I'm highly prog intolerant and been through the spectrum of progs as recommended by meno clinic.

"Least Bad" option I've just about survived on is long cycle - three-quarters of 25 Estraderm patch plus 400mg Cyclogest (vag pessaries) x 10 every 7 weeks, minimal or no withdrawal bleed.

400 Cyclo is equiv to 200 Utrogestan.

If I increase estrogen, the migraines can get worse - so the migs can be created by both estro and prog.

I always feel vile on all types of prog - depression, sweats, palps etc - around day 6 the migraine can start, sometimes it does, sometimes it doesn't, but guaranteed is feeling beyond hideous for 10 days and about 4 after stopping.

Now at end of tether as this monster migraine has given me huge fear, felt like a stroke, thought processes muddled, couldn't remember which day it was, etc etc. Very scary.

I've stopped prog on day 8 - should take 10.

I don't want to ever be taken to that dark place again. Clinic have said that we've tried all avenues now and that only other option is hyster - but that petrifies me.

If I come off estro altogether then I will turn into a basket case.

Would appreciate any advice - should I go for hyster (leave ovaries). I have quite bad bladder / vag atrophy, retrograde uterus, everything has dropped since meno, and have read that hyster can make this worse as vag/bladder drops down even further without the support of uterus.

In despair.

With thanks for any comments.

Night_Owl
x

[jacksfullofaces]

Night_Owl
What a horrible ordeal for you - sometimes endometrial ablation is a consideration in this situation but not routinely offered by the NHS. However if I were in your shoes and couldn't tolerate progesterone I would go for ANYTHING to rid myself of those horrible symptoms.
I can see you have gone through every available progesterone with no luck. I feel for you and recall the wretched headaches I had with the mini pill.
I think exploring the hysterectomy is an option highly worth considering in these circumstances as your quality of life is being destroyed by the migraines - have you been offered a low dose beta blocker to help control your symptoms for a short time while you sort out the solution. Propanolol is well tolerated and can help with migraine and palpitations.

Jacks xxx

[nightowl]

Thanks, Jacks.

I've tried Propanolol in the past but they made me feel v.strange, I'm surprised my GP prescribed them as I have low blood pressure.

Will ask about endometrial ablation at my next meno clinic appointment, in September.

From what I've read re: hyster, although there's no need to take progesterone, there can potentially be other resulting problems, eg. as the ovaries are cut off, what tiny amount of estro and testosterone that may still being produced, is cut off. It's all so scary, on a bit of a low right now.

Have another appointment in July with neurologist re: migraine, but they seem clueless with regard to migraine triggered by progesterone. I couldn't have the MRI done due to claustrophobia. The fear of migraine is now huge. What a mess I am, eh!

NightOwl
x

[jacksfullofaces]

NightOwl
Propanolol can be prescribed for those of us with low blood pressure as it is helpful with palpitations and migraine. It can take a few days to adjust to however.
Jacks xx

[nightowl]

Thanks Jacks, I will bear in mind the Propanolol, I recall it made me feel v.ropey, but then so does all medication as I'm so med sensitive, my stupid constitution.

Have just got a prescription from the Nurse Practitioner for Zomig nasal spray for migraine, I don't tolerate the 'triptan' group of migraine meds but I'll give it a try. Have a neurology appt later in July and waiting still waiting for a CT scan as I couldn't do the MRI scan, this further investigation has dragged on for ages.

Reading through Dr Annie Evans site - extract from one the papers, this alarmed me a bit although it's nothing I haven't heard/read before [ie. mention of long cycle HRT which is what I'm on, albeit very low dose estrogen - the clinic always emphasise the risk of long cycle - and say 'it's not now that you'll develop the cancer if you don't take sufficient prog, it's in 10 or 15 years time':

www.imsociety.org/pdf_files/ims_recommendations/updated_ims_recommendations_on_postmenopausal_hormone_therapy_and_preventive_strategies_for_midlife_health_01_06_11.pdf

Unopposed estrogen therapy is associated with a duration and dose-related increase in risk of endometrial hyperplasia and cancer.
. This increased risk persists for many years after cessation
of therapy.
. Progestogen prevents the endometrial proliferation of
estrogen.
. Endometrial protection requires an adequate dose and
duration of progestogen.
. Long-term use of sequential combined HRT regimens may
increase the risk of endometrial hyperplasia and cancer,
****particularly the long-cycle regimens and where progestogens are used for less than 12 days per 30 days****.
. Continuous combined regimens are associated with a
lower risk of endometrial cancer than in the untreated
population.

Sometimes it's difficult to know which way to turn with HRT - and I admit that many times I think I'll just come off it altogether (again, I've come off twice) continue with the Vagifem and see what it happens, take the consequences of estrogen deprivation.

I will never EVER understand how some women just sail through meno - in my group of friends, nobody has suffered badly and I feel like the freak, it has made me withdrawn and I feel they think I'm making it up!

NightOwl
x

[jacksfullofaces]

NightOwl
You are not a freak - many women "pretend" to sail through menopause to avoid loss of face.This happens in Japan where it is seen as a disease for rich women. My late mother in law claimed not to be bothered by menopause but her ex husband told a different story and it led to their divorce. I have Ehlers Danlos Syndrome anda thyroid disease BUT neither are as bad as menopausal symptoms. I sat in bed all day and cried - engulfed by a wave of black misery.
I recall talking to the practice nurse after I was sorted out and she said "nobody likes menopause" she should know having seen many women during her career.
Dr Annie says long term use of sequential combined HRT regimes MAY increase the risk of cancer - but where are the figures. The phrase may is a great get out clause in my opinion.
If you are very worried it might be worth exploring the hysterectomy option - you could then raise your estradiol as you sound as though you are still deficient in it.
When I started beta blockers I had loose bowels, hot and freezing cold parts on my body and felt quite odd for about a fortnight but it wore off and I'm great with them now and they do have a calming effect. Also have you considered testosterone? One of the PS members found it very helpful for migraine prevention. Feverfew and butterbur can also help with migraine.
Professor Studd takes the view that a short course of progesterone can protect the endometrium and you could consider having a yearly scan without referral if concerned. I found a place that does them for £100 and you get immediate results. I was told that endometrial thickness is nothing to be alarmed about - it is when it starts to increase that you need to be concerned. I honestly think they try and throw a big scare into women with progesterone to ensure they adhere to protocol. I understand this to a point but think that frightening women and making them miserable is not sensible. Let me know if I can help - I have a copy of THe British Menopause guidelines book.
Jacks xx