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[Nin17]

Hi All,
.
first time to the forum and desperate for some advice please

All my this life I've been a headache person and lived through challenging periods with abdominal pain and heavy flow etc...

After the birth of my son in January 2012, I began to experience heavier periods, very bad abdominal pain (like miscarriage pain) and heavy bleeding plus what I  and know now to be menstrual headaches which were dull and heavy and unrelentless(. These headaches came during ovulation and at the time of my period, on a good month – it might last hours, on a bad month... days. As I was working full time with two small kids, I ploughed on and got through by taking painkillers and eventually leveraged acupuncture and homeopathy and I got on with life.

Roll on to June 2016, on Day 8 of my cycle whilst at work, I experienced an awful headache and with it dizziness, nausea like never before, not to mention a monster of headache and imbalance when walking. Over the coming weeks, I visited some GP's and their assessment was vertigo, however my balance was severely affected and my GP sent me to a VRT specialist and after his assessment using equipment, goggles etc.. he suggested it was vestibcauseular migrane at the root cause of my imbalance, dizziness, headaches etc.... For 5 months, I was very debilitated with above and had ongoing headaches daily plus dizziness etc...
 
Almost 1 year plus on, I've made progress on the vestibular front hugely thanks to VRT and time and have good level of functioning overall and able to mind my children, drive etc. My sympthons  currently are headache, dull and heavy over the monthly cycle and I have charted this in detail since October 2016 eg. dull, heavy headaches with heavy flow bleeds start Day 1 or Day 2, can last for 2 to 3 days, then I have  what I call the ring of pain around my right eye which can be present daily at times and at times a sense that my eyes are going from left to right when I walk (only when I walk). Occasionally, I get nausea but normally after reading or a big walk. I then ge t headaches again day 14/15 and again day 21 and some months they start again approaching day 1 e.g. day 27 i will get a low level dull headache. My cycle is also varying e.g. 23 days in Feb and 31 days in July 2017. I can't get a break at all and feel I'm caught in a hormonal cycle of migraines.

my day 3 bloods this month are as follows:

fsh - 14 (range 3.03 - 8.08)
lh 5.5 (range1.8 - 11.78)
oestraiol 47 (range  77 - 921)
prolactin 198 (range 109 - ob557)

i'm very grateful for any advice please, I have an appointment with a neurologist and gyne in Sept & October.

hugs to all.
nin x

[Nin17]

Hi sparkle,

Thanks so much for the lovely mail, in a way I take comfort from it especially knowing someone else has the eye pain, some days I find that the hardest, at first I was surey eyes were damaged.

I will do some searching tonight for threads by Elizabeth rose.

Thanks so much again x

[Hurdity]

Hi Nin17

 

Sorry to hear about your ongoing hormonal migraines.

You haven't said how old you are but if you are under 40 then it is recommended to have two FSH tests within 4-6 weeks of each other to ascertain if you are peri-menopausal since premature menopause (reaching menopause before age 40) needs to be treated with HRT - your gynae would advise. You seem to have one slightly raised FSH level but not excessively so. However your estradiol does looks low. My GP (gynae specialism) told me that low oestrogen can cause headaches. In addition the sudden fluctuations of hormones during the menstrual cycle can all spark headaches and migraines in susceptible women and especially near to peri-menopause when the fluctuations can be extreme as well as sudden.

At the beginning of the menstrual cycle oestrogen is low and rises to mid cycle - sometimes it can rise very quickly (headache?). Immediately following ovulation around mid cycle oestrogen plunges suddenly ( headache?), and progesterone rises ( headache? in progesterone intolerant women), oestrogen rises again and then both oestrogen and progesterone fall and reach their low point at the end/start of the cycle (headache?)/ Progesterone withdrawal can give the classic pmt type migraine - which is what I used to get. So you can see the hormonal headache triggers if you are susceptible .

There is a great article on peri-menopause here although I don't think it mentions headaches:
https://www.menopausematters.co.uk/magazine/pdf/Article%20-%20Perils%20of%20the%20Perimenopause.pdf

Great that you have a gynae appointment - the main thing is that if these are not migraines with aura, but classic hormonal migraines, it should be possible for you to have some sort of oestrogen replacement to bring your levels up if necessary - transdermal is recommended. Hopefully your gynae will be able to recommend what to do (sometimes cycle suppression through injections is also carried out) - and after you have been thoroughly checked out by the neurologist.

I hope these appointments go well and do keep in touch - sorry I can't be of more help but hormonal migraines are a specialised area and especially with severe attacks like you are experiencing.

Hurdity x

[Nin17]

Hi hurdity,

Thanks so much for your reply to my post. Really appreciate the guidance. I think what you have outlined on the cycle pattern below is what I am experiencing. Today is day 11 and I awoke at 5am with a low, dull heavy headache, 2.5 hours later its still around although I have just taken some disprin to start to try reign it in.

I am 45 later this year so hoping that the gyne can help.

In terms of aura, I honestly don't think I get an aura, but this is something I need guidance on as some days I can have more than one symptoms eg head feels muzzy, moving eyes when walking, can feel nauseous then as a result, scalp can be sensitive etc...I think I will need a steer from the neurologist when I see him.

I have very detailed migraine diary since Oct 2016, but every day there is an input so hard to see what, if any of the symptoms as I call them are auras.

Thanks again for the guidance, have a good day x

[Hurdity]

I'm pretty sure you would know if you got aura (not that I've ever experienced it) - eg with my migraines I get all sorts of symptoms like you describe - muzzy head for three days, fatigue, nausea, dizziness (sometimes) and feeling off balance, numb face (not all the time) on one side, and especially the sensitive scalp ie hurts to the touch which then concentrates itself into one area usually on the right side.  Oversensitivity to sound and aversion to light - sometimes a bit weird when I blink. I don't see a doc about these - well I did once a couple of years ago because my husband said I should as I kept getting them ( but not more often than eg 3 weeks) - and then the doc said they sound like migraines - the first time that was said to me - up until then I just thought they were really bad prolonged headaches.

Those symptoms don't sound like aura - here is a description:
https://www.migrainetrust.org/about-migraine/types-of-migraine/migraine-with-aura/ - although weirdly it says that numbness and dizziness are additional symptoms. The primary ones seem to be the visual disturbances described. However I think the main characteristic of an aura is that it comes before the headaches as far as I understand wheras my symptoms for example come during it (numbness or dizziness). I can usually tell I'm going to get one bu only because I get a slight needling persistent headache all day and usually wake with it. Then the sound and light thing starts pretty early on.

There are quite a few on here who have migraines from time to time so hopefully someone who suffers from migraine with aura may come along and describe her experience?

I normally treat mine (sparingly to avoid rebound) with Ibuprofen, paracetamol and aspirin but haven't managed to get something that will stop the headache waking me at night (have a bit of an aversion to meds!).

Let us know how you get on anyway - and read as much as you can about hormonal migraines and HRT. Here are some links to start you off (Migraine Trust and John Studd's website):

https://www.migrainetrust.org/about-migraine/types-of-migraine/menstrual-migraine/
http://www.studd.co.uk/pms_various.php
http://www.studd.co.uk/pms.php

Hope this helps

Hurdity x

[Machair]

I hope ElizabethRose comes back soon as she is a wealth of knowledge on this subject, not sure why she hasn't been posting, holidays maybe, so hopefully she will return with some help for you.

I have migraine with aura so HRT is not an option for me.  Aura is very frightening, even if you are used to it. There are several YouTube videos that show exactly what Aura looks like. My husband saw these and was horrified. It really is horrid.

[Nin17]

Hi girls,

Thanks so much, I will look up a you tube video shortly.

Hurdity, its like you live a bit of my migraine life...I could have days like you outlined with some pain in right eye, up into head and scalp and then on hormonal surges eg day 1 etc..I get the pounding headaches. I have never sudden onset of severe visual disturbances just before a headache. I'm afraid of meds and to date like you work on pain relief carefully so I don't get rebounds. What do you take to manage the silent sympthons eg unbalance, dizziness etc...

I am pleased to have discovered low estrogen in my bloods and praying that I can get some support from gyne, desperate for silent sympthons not to he aura. But I'm nervous, its my first time to see the neurologist and gyne so want to be prepared and at the same time stop my head racing away from me with fear.

Thanks so much again xxx

[Nin17]

Sorry meant to add, glad to have found low estrogen because I thought when this all started, I was losing it  . Thanks for the tip to watch you tube, just looked at migraine with aura, how awful to have to experience it, very frightening xx

[Hurdity]

Hi again Nin17

I hope I haven't misled you - my symptoms are not debilitating in the way that you describe - but I was just trying to tell you of what my migraines are like so that you could see if some symptoms were similar. I have bouts of dizziness sometimes and feeling off balance - but only lasts a couple of seconds usually when I'm standing and not sufficiently frequently for me to worry about - and if they occur it's some point during the 3 day migraine - not at the start. I just think oops - feeling a bit weird here - and sometimes I think - if it carries on I'm going to have to hold onto something but it always passes. Yours sound pretty full on and good that you are being investigated. I also don't get migraines that often any more fortunately - every few weeks probably.

Hopefully someone else can relate re their symptoms?

In the meantime take care until your appointments and hope you find some relief soon.

Hurdity x

[Nin17]

Thanks hurdity for clarification. Unfortunately, I have many days with varying symptoms, some days very manageable and some days a little harder.

Will keep ploughing on for a solution.
With neuro early sept first so will keep you posted and then into gyne in October.

Thanks xx

[CLKD]

Bounce

[shrosphirelass]

I too have experienced hormonal headaches for most of my reproductive life, worsening in peri. They were similar to how you describe, very heavy, pounding and all consuming. I also experienced nausea and sometimes dizziness. They often felt like a bad sinus infection, though my sinuses were clear. I went on HRT because of them becausethey were so debilitating and they did improve a bit. Now I am menopausal I am on a conti regime and they are vastly improved. I think for me the main factor was the hormonal fluctuations firstly around ovulation ( I could predict when I would get one) and then around fluctuating oestrogen levels in peri.

I also get occular migraines, or the aura associated with migraine but strangely enough not related to the headaches.