Living with migraines, or should I say: surviving...

[CeliaAleixo]

I'm 38yo and have migraines since my first period at 11yo... Have tried several treatments, normal and alternative medicine and they seam to go with a flow, some years better some worse... This year started by being a better one but now towards the end it became worse as this time had it for about 8 days... When will this ever go away...?

[BreezyHaze]

Hi Celia!! I am sorry to hear about your migraines and wanted to reach out as am 41 and had them since I was 11/12yrs old myself and headaches since I was around 8yrs old.

I am still in my pyjamas since NYE and its now the 2nd, and not unusual. They have worsened the older I have got, and evolved.

I have absolutely no triggers, or sensitivities, and now get them weekly, probably at least 5 days a week. I have other medical issues which I am sure my migraines have become worse with, but my gyne not so sure and said not linked!.

Mid twenties I'd get 1 bad migraine a month, then mid to late thirties have migraine for 3 weeks every 2-3 mths, now I have one pretty much all the time. Between age of about 18 to 22/23 I hardly had any, and that is when I was 3-4 stone overweight, ate terribly and drank like a fish, especially 18-22yrs! So its never been diet, and my diet has changed over the years. Now healthy weight and have been for 10+ years, but they get worse and I cant imagine worse than this!

I wish I could help your 8 day migraine, if possible get lots of rest, although there is no cure for all and it seems to be a time thing. Do you take triptans? hope it gets better soon!

[CeliaAleixo in reply to BreezyHaze]

Hi there x thank you for reaching out.

I do take triptans but fearing that am getting to the point where I don't know if it's actually helping or causing it...

I relate to what you say exactly: don't have any triggers and I'm certain mine are related to hormones as they always come round my period or in between.

Have eaten a lot worse then I do today and drink more water then I did so when I feel like I'm doing something thy should get better it doesn't seam to work that way.

I had none for the first 6/7 years of my son being born and then it returned gradually increasing in pain level, recurrence times and now duration time...

I do hope u feel better too x

[ShootingStars in reply to CeliaAleixo]

I have taken sumatriptan for migraines for around 20 years or so. Fluctuating hormones, particularly estrogen dominance can cause migraines. Last year my migraines abruptly became daily. At the same time, my cycle suddenly became irregular. I calculated my estrogen progesterone ratio and discovered that I was estrogen dominant, even though for three years prior doctors said it was fine. They didn't calculate my ratio, so they were guessing. Have you had your hormones tested?

A known side effect of too much or too frequent dosage of a triptan is that it can cause rebound migraines.

[Janine61 in reply to ShootingStars]

Hello very interesting that you calculated your hormone ratio, just wondering how you did it? I feel my doctor is guessing as they say you can’t check hormones as they fluctuate too much. But private clinics seem to do it, but I’ve spent so much money trying to relieve my daily headache and migraines. Thank you.

[Janine61 in reply to Janine61]

I would love a reply re testing hormones as I’m sure they are a big cause?

[Onthemove1971]

Happy new year! I have been listening to the "Heads Up" podcast and it has helped me so much, if you don't know what this is, just download an App to listen (castbox or.podcast reader) them search for Heads Up.

I now take Magnesium glycinate 3x a day. I can feel when my body needs more. I was taking a different type of magnesium, but once I changed things got much better. I am.also taking Feverfew. I now rarely have migraines.

I was taking tylenol or triptans way to many times. I did a 6 week free of medication and since then I am so much better.

I still have my triptans for less than 15 times a month.

Wish you the best.

[Jeffner in reply to Onthemove1971]

What dose of glycinate do you take? I have just switched from malate to glycinate and I am a bit confused. Hope it keeps helping and thanks

[Onthemove1971 in reply to Jeffner]

I use Doctors Best Magnisium glycinate 100mg. 1 at around 7am, 1 at 12 o'clock and 1 at 6pm. So total of 300mg. I have been told we can need as much as 500mg, but I am.really doing well worh 300mg.

I also take 1 Feverfew at 7am.

Hope this helps.

[Jeffner in reply to Onthemove1971]

Thank you!

[Jeffner in reply to Jeffner]

Also so glad that this is working for you x

[Onthemove1971 in reply to Jeffner]

I hope it will also help you! The Feverfew says 3x daily. But it makes me gain to much weight so I just do 1x in the am.

Keep working at it so you can reduce the number you have.

Happy new year, hope 2020 bring you less headaces.

[ShootingStars]

I completely understand what you are going through. I'm sorry you too are suffering from migraines. For most of us long time sufferer's, it will never go away. It's part of life. For a few rare and lucky people, migraine can spontaneously disappear and never come back. Getting to the bottom of what is triggering your migraines can help or stop migraines for some people. For many others, the exact cause is never discovered even after many dead end diagnostics.

Excess estrogen or hormone surges that occur during a woman's cycle can cause migraines. I had my first migraine in high school when my period started at age 14. As hormones surge and fluctuate, some women get migraines. For all of my life I had monthly hormone related migraines for 1-3 days before my cycle started. The start of my cycle would nicely stop my migraine. Eventually I had weekly migraines, then several weekly, then migraines that would last for 2-4 days, then weeks, then months.

Last spring perimenopause suddenly caught up with me at age 52. I had a migraine almost every day. Talk about debilitating! Because my cycle was very disrupted, I was having such severe migraines and my estrogen was too high compared to my progesterone, a gyn recommended prescription progesterone (made from peanuts). I took this the last 15 days of my cycle to help regulate things. This helped with some symptoms, but not all. My migraines were improved but still too frequent. Last summer I decided to try some preventative migraine medications. After much research, trial and a few errors, I landed on nortriptyline, a tricyclic antidepressant similar to the more common migraine preventative, amitriptyline. I take two 10 mg pills at night. I have no intention of increasing the dose, although a neuro tried to get me to increase for no reason. At the same time I also started taking a prescription NSAID that some rare types of migraines respond to, called indomethacin. 25 mg a.m. and another p.m. The combination of the two took my migraines from 25 or more per month, down to one or two a week or every other week. I recently had a surgery and had to stop taking the nortriptyline because it interacted with anesthesia. I remained on the nortriptyline, even though there are warnings that NSAIDS can cause blood clotting issues and bruising. Thankfully, I did not have bleeding issues or bruising at all. I was off the nortriptyline for about 2 weeks when the migraines started coming back. I was hoping the indomethacin by itself was enough, but it's not. I started taking nortriptyline again and it has again reduced the migraines I was having.

[Katya3]

Dear Celia feeling for you and hoping that you find a solution that suits you. I have had migraine for thirty years and tried a variety of remedies, none completely successful but most offering some relief. If you have more than 15 migraine days a month you could be a candidate for NHS Botox and you should certainly be talking to your GP/neurologist about preventative medication. Probably worth checking that you are not entering into early menopause as menopause is known to affect frequency of migraines. Finally don't despair and think 8 day migraines are the new norm. You have just survived Christmas which is an unbelievably stressful time of year and many migraine sufferers find they get more frequent or longer migraines at this time of year but then revert back to more normal migraine frequency. Please do go to your GP and ask for help. Even preventatives which did not work previously may be helpful now. Hoping things improve soon.

[Chleo11]

Hello Celia. I am sorry to read that you've had a difficult time these last few days. By reading your and everyone else message there's one thing that is pretty clear: migraine sufferers, specially women 'after a certain age' are not being taken seriously by GPs. That is how we become chronic migraineurs. I find this so infuriating when I think about all the times that I've asked for some help when going to see my GP (I've had migraines for over 40 years) and every time I was given a prescription for Triptans (max 2 a month!!!!!!?????) and for some preventive, always with heavy side effects, let be amitriptyline orsome heart medic. Anyway, never made any sense to me and the doc wouldn't explain anything, just come back in 3 months time. After only a couple of days of taking the medic, I would feel so sick that I would stop. When mentioning this to the doc there would be a long sigh, eyes rolling but no referral to a specialist, don't you dare asking for this!!!!

Another thing that seems clear from reading everyone's message. Our hormones are getting mad and our generation is much worse than our mother's generation and it seems that younger women (you're 38) are having it even tougher. What is causing this? The food we eat? The drinks we drink? Pollution, stress???

One thing the whole society is good at: making us feel guilty about our migraines and that we MUST be doing something wrong!! Neurotics, that's what we are!! (sorry, I have one of those days today when I could punch walls!).

For you Celia, make sure you keep a diary of all your migraines, what you've eaten, drunk, what you've done during the day, what the weather was like. Record the medication you have taken and if it worked or not. Make sure you get up, go to bed, have your meals exactly at the same time each and every day. Me too, I haven't discovered any trigger (apart from my hormones) except maybe when I stay tool long without food, or water and get up later than normal. Demand to be referred to a specialist and ensure you have plenty of ice in your freezer. This helps when you focus on little things like this.

Wish you all the best and Happy New Year! (Oh, by the way, make sure that you find the Triptan that is right for you. They are not all the same).

[CeliaAleixo]

Hi everyone and thank you for sharing with me yiur experiences.

There's definitely a lot you all mention to which I relate to and some good suggestions that will follow: haven't done a hormonal test yet but will book an appointment to ask for it, have only been given one type of triptan yet and will get it reviewed as currently a box is lasting a little over a day, have been given Propranolol as a preventor but it's clearly not doing anything so will get that changed too.

All your advice is greatly appreciated and will keep you posted on any changes.

[Katya3]

A 3 pack box of Triptans a day - that's what they are meant to do - if you look on New Zealand and Oz websites that is what is prescribed - and why they come in packs of 3. Other preventatives include pizotifen and amitriptyline. You must juggle the dose to get one that works for you and benefits are not outweighed by side effects,. Good luck and keep talking to that GP - and change practice if this one is not responsive, they won't be any good for treating other ailments either so your migraine could be a vital early warning system.

[Kathybishop]

Hi Celia.

First of all you’re migraines are 100% due to your hormones.!!

You could have other triggers too! Weather ,food etc

My gut feeling is that the drugs don’t work!!

I had the worse migraines ever when I abruptly stopped HRT

My migraines got110% worse with menopause

What did I do? Eat incredibly healthy-mainly plant based . Sleep well and regularly 8-9 hours night . Supplement- magnesium, vitamins B12 ,Vitamin D Carlson’s fish oils. Don’t get stressed! Get outside. Do what you enjoy . Don’t drink coffee regularly -only when you feel I migraine coming on .

Only take drugs as a last resort!

I managed the whole of October without a chemical drug and the whole of December with just one triptan!

It’s a slow painful process but I’m getting better !

We must help ourselves and not rely on drugs! Besides- what are they doing to our bodies and life expectancy?

I wish you the very best of luck fellow warrior!

Kathy

[Moon_Struck]

Can so relate to all posts on this thread.

Migraines that I had from 9 to c22 years old returned with a vile vengeance when my periods stopped at 44. c14 years on - I'm still suffering.

Hormones can impact massively on migraine. 10+ years of trying all types of HRT, seeing various Neurologists for meds did not give relief. Med sensitivity means I can't tolerate anything but soluble Aspirin - other meds just don't agree, all side effects.

Night sweat, lack of sleep and ensuing stress on the body exacerbate migraine.

Wish I had some words of comfort - the only thing we can bear in mind is that the patterns of migraine CAN change, diminish - and we're all so individual and different, what works for one won't work for another.

Sympathy to all suffering with this hideous condition.

I find Magnesium Citrate helps a tiny bit.