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[Elizabethrose]

As I said to you my migraines morphed, my story started with a migraine coming on the day of my period. Then it could fall anything between -2 +3 days of my period. Then one would develop and then rebound this could maybe last for three days then rebound for three days. This extension continued until I was in bed for any thing up to 13 days with each migraine, but the beginning always starting -2 +3 days of my period. Now given that my cycles were greatly reduced by that point I could find I only had a few days left before the next period and migraine onslaught started. Nightmare! Loads was tried to manage it, nothing worked!

Then they tried HRT and I was being treated by a number of different specialists all with their specific hats on. The day after the first dose all hell let loose and for the best part of a year, with dosage changes and very very careful monitoring, I had no more than 3 migraine free days a month, out of bed.

Hormone supplementation is an absolute curse for me, no matter what is tried.  Even with Vagifem I have side effects though some good and some bad, nothing I can't live with. I am super sensitive to hormone change and supplementation.

However, I think it would be different with you because you've successfully used it for all of these years and it has suppressed all of the horrible PMT rubbish that you are experiencing now.  Now I think your problem may be being caused because you don't have the migraine under control i.e. you're not managing to abort them thus they are rebounding, which makes it seem that they are continuous, Do you understand my logic here? Try the Frovatriptan and Diclofenac suppositories (not tabs) and take them right at the start of the headache, it may abort it and prevent the rebound from happening.
Migraine can last supposedly up to 3 days but mine could go on for 5, which is a worry because they are concerned about Status Migrainous. The migraines should be aborted if they last too long.  Docs have been called in to me to knock me out, which can abort them.

Once you find a way to abort an attack and prevent a rebound you may find you have migraine free days and with your diary you can start to see a clearer pattern. You absolutely cannot take too many triptans as it would cause MOH, which you are aware of. But if you can abort and stop rebounds it could clear time for you. Then it's finding a pill that will suit you and hopefully stop the migs in their tracks!. I understand there are new pills suitable for women of your age but sorry I know nothing about them, maybe a new thread and question will throw up some advice here on MM.

Unfortunately when HRT was stopped it took a very long time for the constant migraine situation to change, years really. It just totally messed me up and as I was further into peri (mine has lasted an unnaturally long time) I then found that my migraines were triggered by every hormonal rise and fall, so were almost a constant feature, maybe 24 days a month. Now I'm not telling you this to frighten you, it is highly unlikely that you will be the same as me, especially given that you have thrived on the pills. I honestly think they can get you sorted!!

You'll get there, roll up your sleeves! Please do ask if there is anything else. x

[Elizabethrose]

Sorry Mav, just to add. Are you aware of the progression through the stages of a migraine, I mentioned them in my second post? What you may be thinking is a an every day migraine could be, in addition to the rebounds, just the different stages. In postdrome when the migraine is effectively over, you can be left feeling battered and bruised. I always said that it felt like I'd been kicked by a donkey! If you can abort them you don't then have to live through all of the those later stages. I hope I've explained this satisfactorily do ask if it doesn't make sense to you. x

[Mav196]

Wow Elizabethrose you truly had an horrific time of it....my heart goes out to you that you suffered so much.....it truly is an awful disease to have to endure.  Thanks so much for your tips and your wisdom, you wouldn't believe how much it has helped me. I am aware of the four stages....I don't get any aura thankfully. I am slowly learning to tell the difference between my daily headache versus the migraine - In the beginning it was intense pain, brain fog, nausea and dizziness all of the time - it didn't wax and wane....I literally sat on the couch in agony and dizzy all the time. Over the last month it has been different - maybe the Gabapentin is partly responsible for this "improvement" or maybe it's just settling down on its own.  Now I can tell the difference i.e. My daily headache is a constant dull blunted hangover feeling whereas the migraine pain is intense pressure like my skull is too small for my brain and my eyes feel strained and out of focus. I think the fact that I have tapered back to 500mg of Gabapentin has meant that the daily stoned/drunk feeling is gone which has helped me to distinguish the symptoms whereas before they were all blurred together.  Having said that I am in the follicular phase right now and am feeling "less bad" but all could change for the worst when I hit the luteal phase but if that happens at least it will tell me a huge amount. I really have to thank you for helping me to see perhaps there is a pattern for me - in that most of my worse days seem to happen after day 14. There is some consensus that the natural fall in Estrogen in the luteal phase is responsible but I wonder for me is it the rise in progesterone at this time that is the culprit given that my progesterone is constantly either high normal or above normal or perhaps it's the Estrogen/progesterone ratio at this time that slams me.
I will most definitely ask my GP for Frovatriptan to see if it will abort the migs for me and it will be interesting to see if that then gives me headache free days as well - if that happens then it will stack up with what you said about it being a mig that is rebounding all the time rather than a mix of chronic daily headache superimposed with migraine.
Thanks for spurring me on and for helping me to see the wood from the trees on this.
Mav

[Elizabethrose]

Mav I've been thinking through what was happening at the time the migraines first kicked in with me and wanted to run this past you.

I'd never suffered from allergies to plants or pollen when younger, had never had hay fever but had developed an allergy to cats in my teens which was like allergic asthma. Around 40 I started getting daily headaches, asthma seemed to ramp up a notch, I started weirdly reacting to odd things like peeling potatoes (!), symptoms of peri started nagging and my menstrual cycle changed from a rigid 28 days to 21, the bleed from 6 days to 1.

My docs decided they wanted to investigate the daily headaches and increased allergies and asthma and sent me off the the Brompton hospital for tests. It was discovered that I had suddenly become allergic to quite a number of things and reactive to others and I was told I had developed allergic rhinitis. They duly gave me new asthma meds which I only ended up needing for about six months but they also prescribed  Triamcinolone nasal spray which I had to take daily.

What happened next was rather miraculous: within about six weeks all of the daily headaches disappeared leaving only the monster migraine that struck me down with my period which one doc had diagnosed as reoccurring sinusitis. Luckily I had another wonderful doc who recognised what was happening as her mother had experienced the same in perimenopause. She realised I had developed pure menstrual migraine and given the other early peri signs, all was checked and I saw a gynae. I was 41.

Have you noticed any signs of allergy/reactivity over the past year? It is very very common for allergies to increase or appear in peri. Just a thought that that might be what is causing the daily headaches aside from the migraine. x

[Mav196]

Hi Elizabethrose thank you for the additional info which has made me thinks about some stuff which I have going on that may or may not be related....I will throw it out here to see what you think

Last year I had a really bad red left eye which wouldn't clear with antibiotic drops. After 4 wks I went to the eye clinic in the hospital and they said it was an infection called Episcleritis and gave me a course of steroid drops and it cleared up.  This year in April both my eyes had mild redness that wouldn't clear up.  In addition I was also suffering from dry mouth. I went to see an opthamologist and explained about the eyes, dry mouth and constant headaches. He was concerned that I might be suffering from an autoimmune disease called Sjogrens Syndrome and referred me to a rheumatologist. Lots of blood tests were conducted but the markers for Sjogrens came back negative. However blood tests only catch 70% of sufferers and so I have to have a lip biopsy in November for a conclusive diagnosis.  So here's the dilemma - dryness of eyes mouth and vagina are common to both Sjogrens and perimenopause. However Sjogrens does not cause migraine but it can be comorbid. My neuro said the eye redness is conjunctival tearing which is a feature of migraine but it is interesting to note that since I have been using lubricating eye drops the redness has not returned even on my migraine days!! He said the dryness can be attributed to hormonal changes in peri.

As if that is not enough to contend with, a recent MRI revealed that I have three protruding discs in my neck (C3-4, C4-5, C5-6). For months I had experienced burning pain across the top of my shoulders but I had put that down to poor posture at my desk all day for work.  My neuro said this is an "incidental" finding and is definitely not related to my headaches. However I am going to see a physical therapist next week who treats a lot of international athletes to seek his opinion on this.

So I am trying to figure out if the migraine and dryness issues are:
A) hormonal migraine from perimenopause
B) hormonal migraine from perimenopause with comorbid Sjogrens
C) cervicogenic headache form protruding discs and Sjogrens
D) a mix of any of the above

So as you can imagine, I am truly demented with all of this. To go from being perfectly healthy to one day my health just falls off a cliff is hard to believe.  Prior to the abrupt onset of the headaches and dizziness the only "ongoing" symptoms I had was a dry mouth and burning across my shoulders.
Perhaps it will turn out that my discs are causing the daily headache and my hormones are causing the migraines....

I am a total disaster......
Mav

[Elizabethrose]

You have so much going on and I think that the lip biopsy is a very good idea especially as it's difficult to diagnose Sjogrens from bloods alone. It's a sneaky little fella and can sit hidden for a good while. Have you heard about Hemicrania Continua? Let me post a link, do have a read;

https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

Honestly Mav, once you know where you are and what is going on you'll find a way to deal with it all. The enemy is best known. People ask me how I dealt with the rubbish that migraine threw at me and my response is the same every time. Humans are inordinately resilient, you just take each day at a time, when you get a good one, you celebrate and make the most of it.

If it's possible for you I'd seek specialist help, research as much as you can and go in armed to the gills with info, questions all written down. Know what you're talking about, be informed, they are then generally more open and responsive. More than ever, after listening to you, I'd advise you to start keeping a really detailed diary. The info will help them enormously to determine what's what.

You're right, all of those symptoms are common to so many different things, peri included, so you need to know where you are, it'll then be easier to cope. The unknown is a scary place.

Aside from all of this other 'stuff' get the migraines sorted. Prof Anne MacGregor directed me to take the Frovatriptan at exactly the same time as the Diclofenac suppository, it is like a double edged sword and a two pronged attack on the mig. (Do not be fobbed off with a diclofenac tab, they don't do the same job at all!) The mefenemic can be used to treat the period pain on the days you are not treating the migs (you may even find that the suppository sorts the period pain too, I did on occasions!) If you can sort the migraines you'll be in a better place mentally and physically to concentrate on the other issues. You really sound peri to me but what do I know?!

I really wish you well and hope you find a solution soon. Ask anything when you need to x

[Elizabethrose]

Sparkle the trouble with peri is that it can sling so much at us and each of those things can bring baggage with them too. It can feel overwhelming and as if we are constantly fighting off a nasty! On top of that there are so many potential symptoms of migraine that can change as well through the migraine stages. Most people, including docs, are completely unaware of some of the migraine symptoms, some are totally weird and many of them are scary, especially with something like silent migraine when the sufferer doesn't even know they are in migraine.

I never knew about Hemicrania Continua, and I thought I'd read just about everything ever published in my search for answers. I sat at the COLM years ago next to a woman whose eyes were so red they looked as if they were bleeding. She described the condition to me. The woman on the other side of me had red eye with her regular migraine but I never have, though I suffer with occular rosacea, which thankfully I manage to keep under control. In migraine my eyes are swollen and I can't focus but never red. So many of these peri and migraines symptoms trip over each other and I suspect that's what you are experiencing Mav.

Like you I have disc problems but in my lower back, they could of course be a separate issue, related to peri, exacerbated by peri, it can be exhausting trying to work it all out. x

[Mary G]

Mav, Elizabethrose is far more knowledge about migraines than me but my story might help you.

I had no history of migraine or PMS while fertile although to be fair, I never got on well with synthetic progesterone.  When I was on the pill in my 20s, I put on weight, had hair growing in unmentionable places (thankfully it disappeared) and I had a constant nasal drip which I now know was an allergy to synthetic progesterone. 

I first had a Mirena coil in 1998 for contraception and again, didn't feel great and had heavy, painful breasts but I didn't have migraines... until my oestrogen levels dropped significantly when I entered menopause.  Two problems emerged, firstly, I had increased vaginal irritation (due to lack of oestrogen and too much progesterone in the coil) and I suddenly developed silent migraines i.e. migraine aura without headache.

Several years and several specialists later, it turns out that I am intolerant to all types of progesterone used in HRT preparations in conjunction with low oestrogen levels and it would appear that my own self-produced oestrogen protected me from the ill-effects of synthetic progesterone while fertile but once they dropped to a very low level, that protection diminished hence the migraines.

I now use Oestrogel, very low dose Utrogestan (vaginally) and take 25mg DHEA tablets everyday meaning I produce a small amount of my own oestrogen again and so far so good.

The problem is everyone is different and you may have a completely different migraine trigger.  I believe Elizabethrose can't tolerant fluctuating hormones and some women can't tolerant oestrogen surges so it is challenging to find your own personal cause.  The only way to do it is by process of elimination. 

I wish I could be of more help but migraine is very complex.  Please do come back if you have any questions.

[Mav196]

Thanks everyone for your replies.....they are so helpful in helping me to get a handle on all of this.

I went back to my GP today and we reviewed everything that has gone on in the last two years. It turns out that in April 2015 I was on mini pill Noriday and switched to mini pill Cerazette in Aug 2015 (I can't remember now why I switched). I came off Cerazette in Sept 2015 because my eyebrow hair was shedding massively. It could have been the Noriday rather than the Cerazette that triggered this because the progestin in Noriday is "not hair friendly". The GP reviewed all of the bloods taken since last year (there are lots of them!!). He thinks perhaps my problem is not the overall levels of my hormones but the actual fluctuations in them. This would somewhat explain why ovulation, Day 21 and the 3/5 days before during and after my period are way worse than any other time. He has agreed to let me try Cerazette again as a way to "level" my hormones. He said that my levels are not low enough for HRT and given my migraines I wouldn't be a candidate for Estrogen supplementation anyway due to supposed increased stroke risk in migraineurs with Estrogen. I do realise that Cerazette drastically reduces both Estrogen and progesterone levels in order to suppress ovulation and that the Cerazette might have been the culprit before in triggering my eyebrow hair shedding ( they never fully grew back despite almost 2 yrs off it and coincidentally my neighbour who is same age as me has developed this problem too and her period is coming every two weeks - she has never been on Noriday or Cerazette so perhaps it was unrelated to either pill in my case). I do also realise that Cerazette may worsen my dryness/irritation but I am willing to give it a try as a last ditch attempt before trialing any more drugs from the Neurologist - the side effects of any that I have tried are just intolerable. The GP also gave me Frovatriptan and Mefenemic to see if these help.  If this current plan doesn't work he will give me a gynae referral.

Elizabethrose I read an article yesterday from Prof Anne MacGregor which talked about Frovatriptan and Mefenemic for use in menstrual associated migraine and I quoted it to my doc today and would you believe it he is familiar with her - he attended one of her talks some years ago!! (My GP is from the UK but working here in Ireland) so I took that as a "sign" that perhaps this is meant to be and that they will work...
Thanks again everyone for your support and for your advice.....keep it coming
Mav

[Hurdity]

Hi Mav196 - I haven't read any of this thread apart from this post - but just to say that suffering from migraine is NOT a contra-indication for HRT and especially if it is hormonally triggered. HRT is nothing like the strong synthetic oestrogens of the CCP  but mostly consists of bio-identical estradiol - the same as in our own bodies. In these circumstances transdermal oestrogen is recommended:

Migraine
Migraine is often triggered by hormonal fluctuations and therefore may occur around the time of a period. Such migraine may improve at the time of the menopause. Some women find that migraine may be triggered by the daily hormone fluctuations which can occur with oral (tablet) HRT so the transdermal (patch or gel) route is usually preferred with a history of migraine.

So - don't rule it out if you get any menopausal symptoms of low oestrogen

Hurdity x

[Elizabethrose]

Mav what a brilliantly encouraging post, well done you! Just a week ago you posted in despair now things are really moving forwards.

Hopefully the pill will resolve the migraine issues, especially if combined with the Frovatriptan. I'm sure the doc told you to but take it as soon as you possibly can after the headache starts, the earlier the better. The major proportion of my migs have always started during the night but when I wake I take a Frova asap. If you find that the Mefenemic doesn't work on the migs but works on the period pain, or if you find yourself nauseous with the mig, do request the Diclofenac suppositories too. They bypass the gut in stasis and work really fast. Obviously that's two lots of NSAIDS so you'd never take them on the same day.

I feel really heartened for you!      

Just as a footnote and this is an aside as you have a plan of action which will hopefully get you back on track. HRT is not contraindicated for migraine and many GPs don't recognise this. The CCP is contraindicated for anyone with migraine with aura which I think confuses the docs. I have papers and studies to back this up so if you find yourself later down the line struggling with this issue, do ask me and I'll post the necessary info. There was a thread discussing this just this week, I'll post a link here for you to read.

https://www.menopausematters.co.uk/forum/index.php/topic,36515.0.html

Prof MacGregor is an absolute darling, really knows her stuff and is so giving of her time. She frequently chairs GP presentations on women's health and has a specialism in hormones and migraine. She told me once that her first task at the beginning of her training was to disprove that menstrual migraine was a thing: she proved overwhelmingly that it did indeed exist and has massively contributed to it's further study. The first two and a half hours I spent with her was, without any exaggeration, the most reassuring time spent in my life.  I owe her a great deal!

Good luck to you, please do keep in touch with us all. Any snippet each of us can pass on here to help others struggling with this nightmare disease is worth it's weight in gold!! I wish you every success! xx

         

[CLKD]

Oh what a dreadful situation  ........ HORMONES 

[Mav196]

Hi everyone
Just a quick update....I went to the GP and he said there is no reason why I couldn't try Cerazette to see if it would fix both my migraines and my PMS. i know that Cerazette reduces Estrogen levels to follicular phase levels and I was worried that such a reduced level would give me additional problems - eg a follicular phase level of someone in their 30s would prob be vastly different to someone like me in their late 40s and so my "reduced" levels on Cerazette might be too low. And so he has given me a gynae referral letter and I am now awaiting an appointment. I guess given the upheaval of the last 10 months I am not brave enough to just try Cerazette without a gynae opinion.
I think that when all is said and done it may transpire that being on Cerazette from my 40s up to Sept 2015 probably kept my hormones level and "spared" me from what is going on now. Perhaps between Sept 2015 and Sept 2016 my hormones went haywire when I was off the pill and it culminated in the onset of this nightmare.
I will keep you posted on how my gynae appt goes
Thanks so much to you all for your support and wisdom
Best wishes
Mav

[Elizabethrose]

Hi Mav,

Great to read you've been referred etc. Probably a good idea to get expert advice on that. I have no idea about the Cerazette: you could post a separate thread asking if anyone could advise as it may be that other members with relevant experience may not read this thread. If you do, include Cerazette in the title.

Sending you every good wish, do let us know how you get along! x

[Hurdity]

Hi Mav196

I can't remember what you said you periods were doing before you started all of this - I seem to think that due to the various POP types you don't know?

As you say, reduction in oestrogen levels (due to inhibition of ovulation by Cerazette) is not ideal if they fall too low - as you say there doesn't seem to be information as to what happens while taking this product, once your ovaries being to pack up and oestrogen levels decline anyway, so it's great that your doc has referred you to a gynae!

It would be good to ask him/her whether one of the newer CCP types for older women would be OK for someone who has suffered migraine (with aura) - because there are two types QLAIRA and ZOELY which contain estradiol so would give you additional oestrogen while suppressing your cycle and hopefully the pms symptoms. They are not usually taken beyond 50 although I'm sure this can be varied under medical supervision ( sorry I can't remember how old you are?).

Do keep us posted

Hurdity x