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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To want to cry from constant migraines?

85 replies

britespark1 · 26/02/2022 19:58

Been suffering for around 2 years now since I turned 40. Came on out of the blue, ended up in A&E back then as the initial pain was horrendous, I couldn’t see, couldn’t walk. CAT scan showed an arachnoid cyst/large fluid filled space, nothing to worry about. Various meds tried, previously on Amitriptyline which worked great for a few months then randomly stopped just before Christmas and now I’m on Candesartan. Min dose of 8mg worked for a few weeks then stopped, so a week ago it was upped by my Dr to 16mg. Previously seen by an appallingly arrogant neurologist who begrudgingly arranged an MRI, again nothing on there to worry about and basically said he didn’t understand why I had been referred.

Half term has been hard work, this is the worst I’ve felt for ages and I feel like I’m constantly pretending to be ok. Rizatriptan not working (neither did Sumatriptan before that), Migraleve not working, dispersible aspirin taking the smallest edge off. 4Head stick and tiger balm help for a while. Been sat crying in the dark room that has made no difference either.

I’m back at the doctors Monday for blood tests so obviously I’ll be speaking to them then but for now a just feel so shit. Sorry for the essay Sad

OP posts:
Hankunamatata · 26/02/2022 20:46

dispersible aspirin takes the edge off? Just checking are you taking a large dose? Dr prescribed 900mg for me for an attack as couldn't take sumatriptan due to other meds

Hankunamatata · 26/02/2022 20:47

Mine migraines started with peri menopause so might be something to consider though GP was saying they are seeing a huge surge in chronic migraine after covid

Original poster
britespark1 · 26/02/2022 20:50

@Hankunamatata yes I take 900mg. Takes the edge off wasn’t quite right - it doesn’t make them go away completely but out of everything I do feel it’s the most help. Then I worry about taking it too regularly as it’s such a high dose!

OP posts:
Original poster
britespark1 · 26/02/2022 20:52

I am convinced peri menopause is playing a part but the Dr just isn’t interested. Had my bloods done last autumn and nothing showed up, maybe it will be different this time.

OP posts:
Dspx · 26/02/2022 20:54

I would highly recommend the Daith piercing it goes through the pressure point in your ear. I used to get about 2-4 migraines a month, causing sickness unable to see properly etc. I have had my piercing for 4 years now and had 3 migraines in that time all while I was pregnant. Even the ones I did have were not close to what they used to be x

Opal8 · 26/02/2022 20:55

Sympathies

Ask your gp to refer you to neurology migraine clinic and ask for crpg injections (ajovy)

bellac11 · 26/02/2022 20:57

@Dspx

I would highly recommend the Daith piercing it goes through the pressure point in your ear. I used to get about 2-4 migraines a month, causing sickness unable to see properly etc. I have had my piercing for 4 years now and had 3 migraines in that time all while I was pregnant. Even the ones I did have were not close to what they used to be x
I had that done, didnt make any difference but others say it works for them

Sumatriptan is my saviour but doesnt stop them coming on but does help me cope. My migraines have vastly reduced since peri menopause so I believe lots of it is hormonal. I used to be crying in a room a couple of times a week.

Awful condition.

Have you tried feverfew OP, you have to take it for some months before it takes effect and it doesnt work for everyone but its worth trying

KissedintheDark · 26/02/2022 20:58

I used. to suffer badly with migraines too op, I feel your pain, migraines a pure bloody misery. I honestly couldn't bear to go through that again.
Some days it would have been a mercy to have been put out of my misery tbh.

A neurologist put me on an anti seizure med - I can't think of the name of it atm. After a couple of years the meds stopped working so was then put on amitrpteline [or it might have been the other way round] and like you the pain breaks through after being on them a while.
I'm now on beta blockers and they've been a life saver. A doctor in France put me on 160mcg dose and here I am 16 years later still blessedly migraine free.
Just to add I had no probs getting the same beta blocker dose prescribed when I moved back here.

Hankunamatata · 26/02/2022 20:58

@britespark1

I am convinced peri menopause is playing a part but the Dr just isn’t interested. Had my bloods done last autumn and nothing showed up, maybe it will be different this time.
My bloods didn't show either but because I was having hot flushes (felt like an inferno inside me) and exhausted to dr put me on hrt.
Original poster
britespark1 · 26/02/2022 21:00

@Dspx I am currently looking into the faith piercing thank you. Bit worried about how much it will hurt despite several other piercings and tattoos of old Blush

OP posts:
Original poster
britespark1 · 26/02/2022 21:00

@Opal8 I will definitely do that thank you.

OP posts:
Heyduggeeeee · 26/02/2022 21:01

My husband started with a constant migraine about 4 months ago. It wouldn't go. He tried triptans and amytriptiline prescribed by the doctor but nothing shifted it.
In the end he saw something mentioning vitamin b2, riboflavin. He started taking that daily and after a few days the migraine stopped and hasn't come back. Might be worth a try?

wonderpants · 26/02/2022 21:01

My migraines worsened significantly over the last 2 years.
Topiramate helped initially then started to wear off. Then added HRT (age 44, regular periods, hadn't considered perimenopause but migraines used to be cyclical).
The combination has been life changing!

TheVanguardSix · 26/02/2022 21:02

The symptoms you're experiencing are related to the cyst... including the migraines, I presume. So why aren't they removing the cyst, OP? Just wondering if they've explained why they're leaving it alone.

Hankunamatata · 26/02/2022 21:02

Propranolol hydrochloride - my friend is on this for preventative. Iv also found naproxen useful int he past but you cant take with aspirin

Original poster
britespark1 · 26/02/2022 21:03

@bellac11 Sumatriptan makes me feel worse, spacey and weird, which is a shame as I know it helps others. The Rizatriptan I’ve recently been given instead just doesn’t seem to be doing anything at all.

I have got FeverFew tabs but as stupid as it now sounds, haven’t been taking them Blush absolutely no legitimate reason why, just the chaos of life. I will make sure I get back on track with those as for a while I was feeling ok.

OP posts:
bellac11 · 26/02/2022 21:08

[quote britespark1]@bellac11 Sumatriptan makes me feel worse, spacey and weird, which is a shame as I know it helps others. The Rizatriptan I’ve recently been given instead just doesn’t seem to be doing anything at all.

I have got FeverFew tabs but as stupid as it now sounds, haven’t been taking them Blush absolutely no legitimate reason why, just the chaos of life. I will make sure I get back on track with those as for a while I was feeling ok.[/quote]
Yes, it does make me spacey and weird but equally it gets rid of the migraine but only after a while, its a day before Im over it and the the sort of migraine hangover thing I get afterwards

Try the fever few, give it 3 months (12 weeks) and then you can know you really tested it

I had propranolol for a while but it made my hair fall out and I found that so distressing I couldnt take it.

LittleMissQuiz · 26/02/2022 21:08

I also got a daith piercing for migraines and I’ve had very few (2/3) since I got it in June - used to get at least one a week, but….I also started on HRT for perimenopause at around same time. I didn’t need any blood tests and I’m only 42 - GP said let’s try it might help!

Daith piercing hurts - NGL - and it takes forever to heal - mine is only just getting there now.

Original poster
britespark1 · 26/02/2022 21:08

Apologies as I can’t quite keep up with all of the replies but honestly I am taking note of everything and will be writing it all down so I can try and get this sorted.

R.e. The arachnoid cyst - basically when I had the CAT scan done at A&E two years ago, I was told that the scan had showed nothing at all. During the next appointment with my GP they mentioned the cyst being seen but that is is a benign thing and believed not to be in anyway connected with the headaches. And then after the MRI last year I was then told, oh it’s not actually a cyst at all, rather a big empty space at the back of my head (much to the amusement of my DH!)

OP posts:
BeautifulBirds · 26/02/2022 21:11

I love my Cefaly, expensive but totally worth it!

Original poster
britespark1 · 26/02/2022 21:13

@KissedintheDark what are the beta blockers called please?

OP posts:
Original poster
britespark1 · 26/02/2022 21:14

@Heyduggeeeee is it just b12 on it’s own?

OP posts:
MaggieMooh · 26/02/2022 21:15

I find that travelling into the city centre sets off my migraines. It’s partly the long bus journey and partly the noise and stress. I can cope with 1-2 days in the city but after that I slowly get sicker and sicker. No medication helps, the migraines don’t stop until I remove myself from that noisy stressful environment. Is there anything about your environment or daily routine that could be triggering your migraines?

Original poster
britespark1 · 26/02/2022 21:15

Apologies B2

OP posts:
bellac11 · 26/02/2022 21:15

Interesting that someone above mentioned anti seizure medication, when mine are bad I feel as if Im suffering brain damage, my whole body shakes, difficult to focus etc

I think if those magnetic things worked they would be prscribed on the NHS

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