New here, reading about people's migr... - National Migraine...

National Migraine Centre

9,118 members2,647 posts

New here, reading about people's migraine experiences!

Anne456 profile image
8 Replies

Hi, I've suffered from migraines for 30 years, classic symptoms - auras, numbness, speech difficulties, pain, nausea. Have used rizatriptan alongside OTC meds all these years for 8-15 migraines per month!! I've always known them to be hormonal migraines, having kept a calendar for years and seeing the same patterns. At the start of last year GP decided they wanted to reduce my 12 rizatriptan per month allowance and began trying me with preventatives, I've tried propranolol, topiramate and atm am on 16mg of Candesartan. None of these have stopped the migraines, topiramate was probably the best at reducing them (to approx 5-6 per month) but I couldn't live normally with the side effects. So yeah, that's me... still looking for a Miracle cure and reading other people's experiences wherever possible for hints and tips

Written by
Anne456 profile image
Anne456
To view profiles and participate in discussions please or .
Read more about...
8 Replies
Dellajoy profile image
Dellajoy

Hi Anne

I’m pretty much the same as you. My triggers are hormonal and changes in routine, wine, lack of sleep and I take propanol plus amitriptyline at night. I’m still getting about 1 migraine a week but it’s so much better than 15-20 a month. I also use frovatriptan and aspirin as soon as one starts. I couldn’t tolerate the side effects of topimirate either.

I’m 56 now and definitely menopausal so I am hoping that hormones will settle down soon.

Hope this helps

Della

Anne456 profile image
Anne456 in reply to Dellajoy

Thanks for the reply - I'm 54 and haven't had a period for 6 years so definitely menopausal too, just waiting for the leftover hormones to disappear and leave me in peace haha! Can I ask how you get on with amitriptyline? This is the one I haven't tried as yet, I am reluctant due to side effects I've googled. The 16mg of Candesartan really affects my sinuses, (lower doses didn't) the nasal congestion is bad, however other than the odd feeling faint when standing up too quickly I have no other side effects - sadly it isn't working to stop the migraines though!

Dellajoy profile image
Dellajoy in reply to Anne456

Hi Anne

I haven’t had a period for 6 months so 🤞I’m in menopause. The amitriptyline is really helpful for my sleep. I feel a bit groggy when I first wake up but it disappears when I’m up and about. Other than a dry throat I am happy taking it.

I use a steroid nasal spray for allergies so I don’t get any problems with sinus or congestion. Good luck I know how miserable it is and how you have to adapt your lifestyle around your migraines it’s not easy.

Anne456 profile image
Anne456 in reply to Dellajoy

It's the grogginess and weight gain people always mention with amitriptyline that puts me off, I'm up at 6am for work every day so can't really afford to be half dead in the morns haha - as the Candesartan aren't working for me no doubt I'll be trialling it soon enough (neurologist wants me to try them all) Thanks for your replies, it's always good to hear other people's experiences x

scottlondon profile image
scottlondon

On Instagram or Facebook join journal speak with Nicole sachs, pain free you by Dan buglio, any tms groups or my tms journey by Dani fagan or unlearnyourpain.com

Forget the drugs, you tried them all 👌.

Start with Nicole sachs and see how you get on or even check out tms wiki

Also there’s some really good books, the great pain deception by Steve ozniach

Healing back pain by John sarno

Unlearn your pain by Howard shubiner

Good luck, feel free to message if your curious to hear more 👌

rhea_smith1991 profile image
rhea_smith1991 in reply to scottlondon

Hi, could you message me and tell me more about this please? Thanks x

licorice99 profile image
licorice99

Hi, I too have hormonal migraines. I am 54 and had episodic migraines for 40 years. They became more debilitating, chronic and treatment resistant about 4 years ago. I tried amytriptaline, topiramate, candesartan. I got some releif with topiramate but it stopped working and the side effects were too much to bear when the dose was increased. Just these past few months I have been on HRT. I had to beg my GP as was awaitng a consult delayed due to covid. Anyway, glad to say the extra hormones seem to be doing the trick. I was getting around 10 per month but now down to 2-3 and they respond well to my usual triptans. I am probably still perimenopausal because I have only skipped 5 periods, but I am on continuous combined HRT and it seems to be working for me. If you are interested look up British Menopause Society, Prof. Anne MacGregor has some info on there which I found really useful. I use transdermal estrogen and micronised progesterone as these are not contraindicated in migraine. I really hope that you find something that works for you.

SiobhanOC profile image
SiobhanOC

My story with migraines....I didn’t even know what a migraine was until I had a sudden ocular migraine attack in my 30s. Had done a massive high intensity workout & ran up 9 x flights of my hotel stairs only to quickly start losing my vision. That evening I went to A&E as I thought I was going slowly blind...it was just that I didn’t know what a migraine attack was. Then I went through a period of bad head pains which a Neurologist said were none classic migraines. Fast forward a few years and I’m now into my 40s and ocular migraine has become more & more frequent! Diagnosed with Vestibular Migraine in lockdown...Tried Amytriptyline & that triggered a really intense ocular migraine attack...so now I am trying Topiramate...can’t use beta blockers as my heart rate is slow (bradycardia). I hope & pray to God Topiramate reduces the frequencies as I had 7 attacks in 10 days or so. Definitely hormonal....that is 1 trigger, tiredness & change of routine...we’ll see what happens. I am cutting out carbs as gluten is no good for the brain!

You may also like...

Experiences of Topiramate for chronic migraines

first time posting here. I’ve had chronic migraines for 18 months, diagnosed by a neurologist after...

Frustration about understanding Migraine

me, so I could ask them how it made them feel. I've suffered with them for ten years, can't eat and...

I'm new here..13 year old with first aura migraine with vomiting

daughter had her first migraine yesterday with all the bells and whistles! Aura (zig zags and...

Anybody experience silent migraines like mine?

vomiting etc since I was 8 years old. I've been through times of frequent migraines of 2 to 3 a...

Ndph (new persistent daily headaches) /chronic migraine

has been suffering with continuous migraines for a year next month and she has just been diagnosed...