Help with migraine!!!! Please help!

[gemgemz]

Hi I have aps and get regular migraines. They usually happen around my monthly cycle and ovulation time. They are starting to get me down and I have 2 young children to look after. I have a migraine tab to help when it is bad but wondered if anyone has had any success with a medication to stop them. I am due to start back at work after maternity leave nxt wk so am worried it will effect my work.

ANY HELP WILL BE GRATEFULLY RECIEVED.

[Ignacio182]

I used to have awful migraines episodes. Once I started warfarin and got to a 3.5 INR mean.. they dissapeared.

[KerryA]

Very sorry to hear about your migraines. I used to have them really badly and in association with my monthly cycle. Often I couldn't work for 2-4 days. I'm convinced that my hormones affected my INR level, but I didn't know for sure because I was having my blood tested about every 3 weeks at the hospital so out of sync with my 4 weekly cycle so I think my INR was all over the place and probably dropped too low at certain times of my cycle which would give me a migraine. Eventually my consultant allowed me to get a home INR machine. I then noticed these changes with my cycle as I was monitoring myself closely and dosed myself accordingly and managed to stop any big highs and deep lows, and surprise , surprise I've had no more migraines associated with my cycle!!! Actually, I eventually had cystic ovaries which bled profusely, making me very ill. I couldn't be operated on so had 3 monthly depo injections to control my overies. As a consequence, I stopped having periods and my INR management was even easier without the hormonal changes.

How do you get your INR tested, asuming you are on Warfarin?

Is it worth you considering getting a machine if your consultant is happy with that? Do ask.

Really hope you find the answer to your migraines

[MaryF Administrator]

Hi, can you email your main consultant, copying your GP into the correspondence? There must be something new for your to try alongside your existing medication, it is not unusual to have more migraines around hormonal changes, even for those that don't have Hughes Syndrome/APS. I hope they can help you. I think with most migraines, you have to get on top of them at the slightest hint of one developing, at least that is what I apply to myself. MaryF

[KellyInTexas Administrator]

I’m so sorry... it literally robs your life, I know.

I’ve recently started on new therapies.

Amovig 140 mg preventative once monthly injections and Nurtec ODT 75 mg abortive tablets.

They are both “CGPR” .

Calcium Gene Peptide Receptor

The injections are meant to prevent- and the oral dissolving tablets you take only if you have a migraine- to abort it at onset.

You will need to google this and research it . I’m not sure about it in UK.

I “think” it is helping me , but it is not a magic cure.

[Jmiller623]

I’ve had migraines since I was 12 years old. Mine are also cycle related. I was on oral contraceptives for a long time. Once I stopped them, my migraines got a little better in regard to frequency. Triptans have always worked as an abortive therapy for me. I take naratriptan which is a longer acting one and this has been my life saver.

I do not have APS but am persistently aPL positive with SLE. When I started taking full dose aspirin, that also helped tremendously. For prophylaxis, I found beta blocker to work the best. I am off of it now since my dysautonomia seems to be controlled but I know some try propranolol and have good results. Topamax is also used for prophylaxis but I am not down with taking seizure meds just based on personal preference.

I hope you find some relief soon! ❤️xx

[KellyInTexas Administrator in reply to Jmiller623]

Oh,

Yes, I take 300 mg split dose topamax but it’s for seizures. It’s supposed to also help with migraines ( especially cluster) but I find it does not.

Both of our children have migraines now.

Our daughter was having three a week ( like me.)

She’s raking Aimovig also. And sumatriptan. ( which I also take with some success but not great.)

Our son has Been prescribed propranolol for preventative measures. He also has mild aspergers so will help with a little performance anxiety which can come with that. ( social )

I forgot about the other things I was on...

[WendyWoo50]

Hi, I’m sorry u r having migraines I totally understand. I am a sufferer and they normally last a whole week. Last year I had one that lasted three weeks and I was beside myself. Having had a total hysterectomy (ovaries removed too) I’m sure mine are not hormonal.Many years ago I tried Toparamate. I don’t recall them being fantastic but I developed just about every side affects listed and had to come off them. So after the three week one last year my GP prescribed Candesartan 2mg, which I take at night.

They have helped enormously! I’d say they r worth a try. Good luck 💋 x

[KellyInTexas Administrator in reply to WendyWoo50]

I’ve been having about three a week- the Aimovig is helping some.

Thank you Wendy- I’m going to look into what you're mentioning also- thank you! ( for my children also.)

[schulz]

I started with migraines at 12 and had them until 29 when I found out I had APS and started aspirin for pregnancy. I was amazed to find the daily aspirin prevents migraines for me. I still occasionally get ocular migraines when I'm not consistent with aspirin. But those are nothing compared to full blown migraines! It's now been 15 years and I've maybe had 1 or 2 real migraines.

[Turner71]

My apps was diagnosed as a result of having migraines around my cycle. Was great for 2 weeks then unable to get out of bed for the next 2 weeks. Had the hormonal coil fitted which has really helped alongside my anticoagulants

[Tofino5]

I feel for you, migraines are horrible, especially when caring for young ones. I'd better put in a disclaimer first - this is my experience, and everyone is different. This works for me. Eliquis is not generally recommended for APS because there are few studies.

I had devastating migraines until I got off warfarin (triple positive APS) and went on Eliquis. I had to retire early because of them. I trialed every migraine preventive there was for almost 10 years with little to no relief. Apparently my body was terribly unhappy with warfarin so that when I stopped the warfarin, within 2 months I was 80% better with the migraines. However after about 2 years they became gradually worse. I trialed on Ajovy (a CGRP inhibitor) and did miraculously well the first month, but failed the second month. I hope to trial on Aimovig soon.

I wish you luck in your search. Please don't give up, contact your doctor as often as you need to, and don't let him pass you off.

[gemgemz]

Thank you so so much for all your comments and advise. I have taken note of a lot of suggestions. Can I also ask if anyone has days where they feel like there is fog all around your brain. I have seen people talk about brain fog where they forget words but it feels foggy all day and sometimes clears later in the day. I am thinking they are linked to my migraines but just wondered if anyone has experienced this?? I am on claxaine for blood thinners and asprin. I have just been trailing a betta blocker for migraine prevention

Many many thanks

[Lure2 in reply to gemgemz]

I hope you have a Specialist of autoimmun illnesses who understands that we get a lot of different neurological symptoms (like dizziness, brainfog, visionproblems, memory problems etc etc).

Read "Sticky Blood Explained" by Kay Thackray who has APS herself and who explaines about these things. Also good for relatives to understand how we feel with our very thick blood that has to be thinned at the correct INR-level all the time to avoid all the bad symptoms.

[gemgemz in reply to Lure2]

Thank you. I will do that 👍

[maydy7300]

Read this : healthline.com/health/migraine