Peri, menstrual migraines and other symptoms. Help!

[TheHeadacheNightmare]

I've NC to post here, there's a long backstory but I'll try to be brief.

Menstrual migraines run in my family DM's side; my DM, DAunt (Mum's DSis) and cousin all get them.
No other girls on this side of my family.
DM can't/won't talk to me about anything gynae.

I had my first menstrual migraine aged around 27, started with one or two a year and manageable.

They have reached fever pitch in the past 5 years so I'm in agony 4/5 days of the month.
I take sumatriptan nasal spray and zolmitriptan tablets which take the edge off but don't stop them.
It's so bad it's affected my career.

Had a referral to a neurologist who said I was doing everything I/they could.
I've researched extensively and sure enough, short of taking to my bed for a week a month I'm taking and doing everything.

I'm 45 and have other peri symptoms including:
Erratic periods they used to be completely regular
Exhaustion but trouble sleeping
Very low mood
IBS symptoms

Plus other symptoms like hair loss and weight gain.

My GP is difficult, she's been vile in the past there's a back story so now I take DH with me when I have an appointment and she still rolls her eyes at me so I don't go.

Should I ask for HRT? I'd prefer not to take any tablets as the IBS is so bad.
Would patches or gel be suitable? What should I ask for? Should I ask for a referral to a gynaecologist? I'm at my wits end.
Please help!

Firstly, change your GP. You need support and solutions not eye rolling and unkindness. Maybe a new GP would be able to recommend something more suited to you and with a sympathetic ear.

I agree, you need to change your GP. You should be able to trust your GP on your own with your health.

Yes, I know you're right about changing my GP. It's been on my to do list for a while but we live rurally so there are only 2 GP surgeries to choose from. I was waiting until after the neurology referral, then we were on holiday.
Now I'll put in a repeat prescription request so I have enough meds to get me through the GP change.
Not that I mind DH coming to the Drs with me, he's been good at asking questions I hadn't considered.

So yes, I'll change GPs.

All of that notwithstanding, does it sound like HRT would be appropriate for me?
At the new GPs would it be appropriate for me to ask them or for a gynae referral?
My periods are all over the place.

I was the same. I had prolonged vaginal bleeding and in the end had my womb and cervix removed and haven't looked back. Not had a migraine since.

I'd be seeing a different GP and also saying you need something done as you can't go on.

Thank you dmvnq

I'm not sure that my periods are necessarily prolonged, rather they don't last for long, often only two days but they are very, very heavy.
I've never had flooding until now.

I'm reluctant to have surgery unless it's absolutely unavoidable I'm sure most people would feel the same. I'd rather try HRT if it's appropriate. Either way, I do need advice from an HCP.

As a PS I meant to ask; while I'm sorting all of this out ie changing GP and starting any treatment, can anyone recommend vitamins/supplements that have helped with their peri symptoms?

I already take a multivitamin with iron, magnesium with B6, cod liver with evening primrose, CoQ10 and VSL#3 for IBS.

Is there anything else you recommend?

Possibly black cohosh but you are better asking at the shop when you buy them.

I had some minor success with vogels menopause supplements plus lifestyle changes (no booze, loads and loads of water, light exercise every day)

You must change your gp

surgery isn't the answer because if you keep your ovaries you will still get the monthly cycles of headaches even without a period itself.

Without your ovaries it would be a whole new ball game and not one most women would recommend. Really hard to get the replacement hormones right for many.

You should avoid asking in a health food store for advice; They are there to sell products and are not medical experts.

TBH you need referral to a gynaecologist. This is not just 'peri' it's severe migraine with your cycles. You are young - 45- is young! Some women find that one of the birth control pills help this kind of thing - one with body identical estrogen is Qlaira- and is used for women your age as an alternative to HRT.

Basically what you are needing is something to give you a predictable cycle or- with a BCP- override ovulation. There is no guarantee that 'normal' HRT will stop the headaches. Headaches like yours are caused when the progesterone level falls - it's a 'withdrawal ' headache. I'm on HRT and some months get migraine.

I'd not suggest black cohosh- for a start it can be risky long term- liver disease- and it's not especially suitable for your issues.

See another GP and insist on a referral to a gynae who is sympathetic and interested in menopause. if they refuse, can you fund such an appt youself and see one privately?

I agree Jill, I do need to change GP and I will.

Firstly though I need to order a repeat of my triptan prescription and you know the bit in the first Indiana Jones where he has to get into the cave for the Ark?
Well getting a repeat prescription is a bit like that at our surgery.
I'll get on the phone to them after 9am.

Then I can change GP.

Queen you've confirmed my suspicion, I thought I needed to see a gynaecologist but wasn't sure. Luckily, we have private health insurance through DH's work so that will be the easy bit.
To get the referral I will need to see a GP, that has to be my first stop.

What you might get on well with is a Mirena coil which will stop the heavy periods and alongside that you'd only need estrogen- gel/ patch. With the Mirena you'd not get the dips with other types of HRT which might trigger your migraine. HRT of any sort should help with most of your symptoms of peri but the downside is you MAY still get a migraine each cycle. It's going to be trial and error to find a type of HRT that suits, but you will get there in the end!

Hi OP I have suffered with menstrual migraines for as long as I can remember and I'm only 32. I get them normally before I ovulate which is the worst and then after I ovulate I get a smaller attack. I spent years bouncing around doctors with little or no help. Then I found the national migraine clinic in London and they changed my life.

Finally I had someone who understood what was happening to me better than I did and they were sympathetic. They gave me new coping mechanisms and actually highlighted that triptans can give you rebound migraines just as painkillers can too. They offer lots of different services such as Botox etc so it might be worth having a read of their webpage or seeing if you can get in to see them.

I'm now 4 months postpartum and they are slowly creeping back in for me and I've been put on the mini pill which could actually make them worse, only time will tell for me. I've got amitriptyline waiting to go but they knock you out for the first week which isn't ideal right now with a 4 month old who refuses to sleep so need to wait a bit longer to start them. These were given on my GP's recommendation and if they don't work I'll go back to the national migraine clinic in London for help, I'm no longer in London which is a shame but worth the travel if I need it.

There's lots of other things you can do to manage your attacks that don't involve medication. For me lack of sleep, inadequate water intake and poor diet make mine 100 times worse and I completely avoid cheese and chocolate. Also I tend to turn to sugar around my time if the month which also adds to the problem. Most people think that menstrual migraines are only effected by hormones but your general health and well-being is still as important and can minimize the attacks.

Please find a new GP who will listen and sympathize, I find too many downplay the impact of migraines on a persons life. I hope you get the help you need!

Queen I can't have a mirena. I had 2 for 5 years each, they were great and on principle it's a good idea but when it was time for the third I had one fitted I had one and it came out! So I had another fitted and something went wrong, at first I thought I had a UTI and treated it at home. By the time I got to the GP I was sent straight to hospital with a big gynae infection.
Since then I'm not allowed a mirena.

Thanks smurfy mine are pre period, not at ovulation.
I do all the no sugar, trying to sleep, plenty of water, good diet, I only drink on maybe 4 days a year, I keep chocolate and cheese to a minimum and I rarely drink caffeine.
I really am following all of the advice, I'd do anything to stop them but it's a rearranging the deckchairs on the Titanic effort as ultimately they are definitely hormonal.
Yes, I'll do my best to find a sympathetic GP, that's the way forward.

I think the Mirena issue is a shame.
It might be worth asking for another opinion on that. You had 2 where it all went well, then one that must have been incorrectly fitted, it came out and you got an infection. That may have been more to do with the incompetence of the person fitting it. (I had a copper coil which was hard to fit, then it slipped out partially within 3 weeks ..I reckon it was never in place properly.)

What I have learned over the years is that what one dr says another can disagree with especially when it's a GP v a consultant.

Go and see a specialist. Most Gps as shown on this forum know bugger all about HRT (I think med training is half a day on menopause) and as you are having issues, you need someone who knows about it all.

smurfy I didn't mean to be blunt or dismissive in my last post.
I've tried Botox and a daith piercing, all to no avail.

I'm aware that triptans can cause rebound headaches but on the advice of the neurologist I take them and they do work for me up to a point. I'm also prescribed codeine when the pain gets really bad, that too can also cause rebound headaches but it's a case of getting me through those days every month. Even though I'm exhausted it hurts too much to sleep.

Please look at this old MN thread and make sure to read all the NHS NICE Guideline links that were posted. And as everyone else has said, get yourself a referral to a hormone specialist. If you are lucky enough to be in Panay's area, ask for him....he is amazing.

The pill solved my hormonal migraines (which HRT did not).

Frankly, the relief that I got from my peri-menopausal symptoms by going on the pill at 41 was so life changing that if I could go back and pay for it privately to skip the year it took to get to Panay, I would happily do so. I am doing round 2 now as I'm 55 and all the doctors want the specialists to say that it's ok to continue with the BCP and not switch to HRT (or worse - nothing). I have just been to the specialist a few days ago and she reaffirmed that it's perfectly fine (I'm thin and I don't smoke and live a healthy lifestyle) to continue indefinitely with the BCP's especially as the BCP's are helping so much with ALL the perimenopausal symptoms like migraines and asthma and severe joint inflammation.

I had the same problem with the menstrual migraines although my periods were not so bad though. My GP suggested mirena coil which has worked for me. My migraines have almost gone - i do have them from time to time but the severity has been reduced. Plus i have the bonus of no periods. I'm started with the mirena age 41 and now almost 50 and been having hot flashes for sometime so guessing i'm well into menopause. There are some side effects to the mirena and my GP did say it doesn't suit everybody but its certainly made a difference to my life as i'm no longer ruled by my migraines.

Bugger - just read your post just above about your experience with Merina so just ignore my post. Sorry!
Hope you find some relieve soon and sending my sympathy.

Plus - find a better doctor if you can! bad enough dealing with the migraines/ periods but dealing with unsympathetic GP as well just makes it worse.

@TheHeadacheNightmare don't worry you didn't come across as blunt at all! I understand your frustrations peddling through everything trying to find something that works. Hopefully someone else will be along with better advice!

Ah smurfy yours is good advice and would be exactly what to look at, I've just been through all of those things and now it's time for the big guns I think

Thanks Sofia I'll take a look at that thread now.

You mentioned the supplements you take which is one way to have a more natural approach. However, you may want to look into the quality and absorption of your supplements to help with effectiveness. Review the supplements with your doctor as a first step. For CoQ10, it is better absorbed in a water and fat-soluble form. If taking iron, it is better to get blood levels tested and work with your provider on dosage as taking too much can lead to excess iron intake.

I've upped my iron intake as a result of anaemia a while back ckc. Everything else I've guessed at myself.
Again, I'll ask a new GP/specialist about the vitamins and supplements I'm taking. I wouldn't discuss it with my current GP because her response would be utter indifference or to imply that I'm stupid.

I know it can be so hard to work with a doctor that is knowledgeable about all supplements or open to it.
You can also consider a Registered Dietitian for guidance on some supplements.
Hope it goes well. Good luck!