Migraines/autoimmune

[Danimccrea]

Hi there I was just wondering if any one could share there experiences regarding severe migraine with autoimmune? Is this something that is connected? I've allways suffered with headaches from being a teen, but this passed 2 years I've had many episodes were they have been pretty unbearable often when my body is having a flare (fibro?) I'm under renal Care at hospital at the minute due too having membranoproliferative nephritus, but they are still investigating the cause of all my health problems at current. I also have high blood pressure but the doctor say this isn't related with migraine, but I'm having what I think is a flare at the moment my blood pressure goes high, I ache in my bones joints, have severe migraines on and off, and severe fatigue basically my body feels worn out like it's being attacked, the specialist said my immune system is attacking itself but I wonder does this cause migraine also? Sorry its long I get so stressed out about it all it does me no favours.Thank you 😊

[MusicalFurbaby]

Hi Danimccrea, I have no idea if migraines and AI stuff are connected but I’ve definitely had both. I used to get migraneous vertigo where the migraines would send me dizzy and make me fall over. It started happening a few years after my first lupus symptoms appeared (but it took 8 years to get a diagnosis, so it was not factored into the migraines investigation). Fortunately, my neurologist and I successfully treated the migraines with a super high dose of Vitamin B2 (not B or a multivitamin, it has to be B2 specifically). I’ve not had them since. Still have plenty of lupus though 🙄😄

[Spandau]

Hello, I have suffered for many years with severe migraine to the point where I was getting almost one a day. It took 30 years for me to get a diagnosis of SLE (I am now 53) so it wasn’t until then that anyone considered a link with autoimmune disease.

3 years ago I paid and saw a migraine specialist privately who suggested I try blood thinners because although I don’t have a diagnosis of APS, people with Lupus can have ‘stickier’ blood which can cause migraine. Since being on the blood thinner Clopidogrel, my migraines have improved dramatically from one a day to one every few months. Having suffered with severe migraines since my teens and feeling like they were never going to get better (I tried every medication, alternative therapy available) I am so relieved and it has made such a difference to my life.

I was put on Clopidogrel because I am allergic to Asprin, baby Asprin would normally be tried first.

I also find that when I am anemic I can get migraines so it may be worth having that checked if you haven’t already.

Good luck, I hope you find something that helps as I know how miserable it can be.

[Spanielmadlady]

Hi.i never used to suffer migraines but I do now albeit not on a regular basis. Photosensitivity appears to be my trigger and since covering up etc all year they have lessened.headaches are a part of life with lupus and stress will only make it worse so you need to keep that to an absolute minimum.High BP can be a symptom of renal issues .do you take medication for it ? I have high BP, have class 5 Lupus Nephritis and take moxonidine.

Kind regards SML x

[Danimccrea in reply to Spanielmadlady]

Thank you for your reply, I am on medication for BP alltough it's not working at present and has been doubled, as for my nephritis the renal specialist wanted to keep me off meds for 2 month as my kidney function tests were OK at present. I see him in a week so will mention to him. 😀 x

[Spanielmadlady in reply to Danimccrea]

Pleased you are on meds.my kidneys are also stable but I remain on meds.maybe you need a different one 🤔. Hope appointment goes well.im due a renal check next month xx

[dg70]

My high blood pressure meds were upped to 8mg and my headaches/migraines subsided a bit. I upped my water intake and that helped a bit Since being on hydroxychloroquine and pilocarpine I have very few headaches and no migraines for a year now. I still get dizzy as my eyesight goes blurry because of sjogrens but I don't go on to develop headaches with it now.

[Sher78]

As someone who suffers with several AI conditions, I can clarify that in my case, I get severe migraines that are linked to having systemic lupus and antiphospholipid Syndrome (in fact it was one of the first symptoms that appeared for me aged 12). It is common to suffer with migraines or headaches of some description with certain AI's but not everybody will get them. Luckily, I manage my migraines (get about 2 a week) with Maxalt. I also drink about 4 litres a day (I have Sjogren's so it's a very easy task) so that helps I believe. Have a little read of this link migraine.com/blog/triggers-...

[Maddymay65]

Hi Danimccrea

Sorry you are having such a hard time.

I can relate to migraine , in my personal experience, mine are worse when my lupus is active. They are exhausting and the after fatigue almost as bad as the migraine . I often complain I lose days to migraine. However I have been lucky in that my rheumatologist listened and spoke to a neurologist about them. I was started on Topirimate 25mcg three times a day ,quite a few years ago which have really helped. It is actually for epilepsy but it works . When I am well I drop down to two a day .

I also found rizitaprin 10mg melts brilliant for when i do get a migraine, bit of a head rush with them but wow they work.

Rest of course if you can is the best treatment , as much of it as possible. Sounds like with all those symptoms your body is saying no ! stop

Hope this helps and you feel better soon . 🤗 M x